Dear Family & Friends,
I told myself that I wasn't going to even acknowledge this day. As it approached, chances were that I wouldn't even know what day it was, as I usually pay little attention to the date these days anyway. Allie expressed to me her anxiety as it came close. I assured her that it was nothing more than a meaningless measure of time. If we have to think of that day then we will think of it as the day we could have lost you and didn't.
That day one year ago today is forever burned into my memory. From the first call. The disbelief again and again as people told me things that could not be possible. That I did not want to hear. The pain. The fear. Then the joy when I walked into a hospital room whispered my daughter's name and watched as she opened her eyes and looked at me. Sure she was scared beyond belief. She looked horrible. She was barely recognizable. But it was Allie that looked back at me and I knew at that moment that she was going to, against all odds, survive. And survive she did.
There is no way that any of us could have possibly anticipated or prepared for anything like this ever happening. Coming from a large family, we have always felt very fortunate that all our kids were as healthy, happy, smart and as beautiful as they all are. You prepare for your kids going away to college, you think about how you will feel when you find yourself with empty nest syndrome you even prepare for earthquakes. You do not prepare for paralysis.
This past year, the first 12 months of this journey, have been filled with a stronger mix of emotions that I could have ever imagined experiencing. Everything in our lives has indeed changed forever. It has been a constant roller coaster ride of frightful as well as uplifting turns and bumps. Because of all of you, we have made it. Allie has had the love and support of her family, friends and the whole community (close and extended). So, in spite of all the hell and torture she has had to endure both physically and emotionally, she has never given up. I honestly don't know how anyone less fortunate they we have been, gets through something like this. Thank you all so so much!
Since my last post Allie has been making great progress in getting out more and planning for her immediate future. We took a trip over to Morgan Hill to visit with Connor and his family. Jordan came along to help hold Al's head over bumps and turns. Connor, is not only in a wheelchair but like Allie, also dependent on a ventilator. His injury was a result of a diving/swimming accident at camp. He and Allie are very close in age and he has been a great source of comfort and inspiration and Allie is very fond of him. We first met Connor and his family when they visited us at Valley Med and since, they've visited here at our home a couple of times and met us in SV for sushi dinner. The more I get to know Connor and his mom and dad, the more I like them. I am very thankful for their friendship as we share day to day trials and fears that most parents could never understand. We also enjoyed a visit with Jerry and Katie last month. It's the first time that Allie and Jerry have seen each other since their accidents. Having gone to the same school but, having been in different grades and traveling in different crowds they never knew each other much. The visit went really great and we look forward to more get-togethers. Jerry brought his computer set-up for Al to see. She's also seen Connor at work on his, so she now has two to compare. She actually had an opportunity to use Jerry's and caught on very quickly. We are in the process of getting her a set-up now, thanks to a generous donation from Marquerite. I sent a letter to Apple in hopes of their donating a computer but never heard back. There is a possibility of having her old laptop fixed and so I am pursuing that today. She is now more than ever, very eager to get online. That same day, while Jerry was here we had a visit from Levi and his dad, Bill. Levi has spent the last ten years in a wheelchair as a result of a broken neck. He is a great source of information and keeps in great shape with the use of a specially equipped bike (unfortunately very expensive). One of the things that bothers Allie most of all is the loss of muscle as a result of no real exercise. We can give her range of motion to keep her joints from locking up but, we can do nothing to maintain or develop muscle. Allie's cousin Latasha visited for a day and night recently and joined Allie, Ashley, Tanner, Vince & Daniel for a picnic in the park. Al even made it to watch one of Adam's Lacrosse games. It was a bit frustrating for her though since she can't move her head side to side to watch the action.
As it seems is the case for Allie more often than not, with steps forward so come those backward. A couple of weeks ago Al went in for a check-up with her ENT. We were very excited to find out that he was able to acquire the smaller trach that we hoped would allow Allie to voice. The trach went in and at first Allie was able to have enough of a leak to have a bit more than a whisper. Going home we all hoped that over the next couple of days the leak would increase and she'd be talking. As the night went on things rapidly began going in the other direction. Her whisper became quieter and her peak pressures (the amount required to fill her lungs to the set capacity on the vent) began rising. By morning it was very difficult for her to breathe. We made some adjustments on her vent and called her doc. To make matters worse I had broken one of my own rules and allowed such a big change to take place on a Friday. It was Saturday morning and her doctor was out of town. We got one of his associates on the phone and since it was a Saturday our choices were to bring her to the ER or change the trach back to the larger size ourselves. Trach changes are done at home all the time and it is a relatively safe procedure. Allie opted for us to change her trach. We've seen it done several times and she would agree to almost anything to avoid going to the hospital. So, with the doc on the phone to walk me through it and for moral support, we got started. Ron was right there with me and we felt fairly confident. At some point during the procedure Kerry came so she was there with us also. I removed the trach and inserted the new one but, it would not go all the way in. I asked the doctor how much resistance should I expect. She said there would be some and that I should go ahead and push it in. It remained sticking out of her stoma about one centimeter even with the gentle pressure. I switched back and gave Allie a few breaths. We tried again. It would not go in and granted this was my first time doing this but, the resistance seemed to be too much and I was not willing to push any harder to get it seated. Allie said she was going to pass out. We told her that her sat was 98 not to worry. I am not positive of all the details. One second she was okay and the next she was passed out.
Her face immediately drained of color her face and her eyes rolled back and then fixed straight ahead in a blank stare. Okay, I know you have heard this story before but the times it happened we were in the hospital. Code blue could be called and within seconds the room would fill with trained people that could help bring her back. They had the tools and the training. Scary beyond belief but at least we knew she had the best chance possible. This time, we were at home alone. I pulled the new trach out and Ron inserted the smaller one. It went in easily. We began giving her breaths with the ambu bag. There was no change. I saw Kerry standing at the end of Al's bed. Her horrified expression and eyes full of tears. For a flash of a second, I thought I had killed my daughter. Ron told me no way we would get her back. At some point, during the trach change I'm not sure when, Kath had showed up to do ROM. She called 911. It was a good three or four minutes before we began seeing color come back into Allie's face. Once again our buddies at the Felton Fire showed up. Allie's heart rate was terribly slow but she was awake and talking. She refused to go in an ambulance and we headed over the hill to Kaiser ER. Kerry came along to help. The ENT doc promised to meet us there. After talking with the doctors what we think happened to cause her to pass out is something called vagaling. You may remember this happened to Allie before when she was at Valley Med. The vagus nerve is the nerve of the muscle in the throat and larynx. Many things can stimulate this nerve which causes the heart-rate to slow to a dangerous rate or even stop.
After a frustrating 1/2 hour or so in the ER where I managed to anger at least two doctors and one nurse that were convinced that Allie had a lung issue and were eager to administer steroids, we were able to see the doctor that had been on the phone with us so was familiar with what had happened. She tried to put the size 6 trach in and met with the same resistance. To make a long story short...Al was admitted into ICU. Her doctor was contacted and he asked that as long as Allie remained stable that nothing be done until his return. Monday she went into the OR. The granulation was back. In just the short time that the smaller size trach was in, her trachea/airway had almost closed. Allie did really well through the whole ordeal. She told me sadly that she thinks she's getting use to it. We came home Tuesday and she's doing great.
When I began writing this post Allie was fast asleep. She's awake and by the look on her face just now when I walked in the room to check on her, she knows what day it is. Her face was a mask of grief covered in tears. I don't want to get up today and I don't want to see anyone she told me.
I wanted to tell you more about the positive. The growing relationships Allie has with her Uncle Doug, Auntie Vicky, Auntie Sandi and Auntie Pam. The friends that are always here for us both and make the biggest differences in our days. How Scotty and Samantha loaded her up in the van for an outing the other day without my assistance. About our Easter. But, I don't have time. I need to go lay down with my daughter and promise her as many times as it takes, that things will get better. \\
Ahh there's Jordan's jeep just pulling in to the front. She's been with Allie every step of the way. We will get her through this day.
Thanks for listening. Thanks for the love and encouragement. Thanks for the prayers for my baby girl. Thank you. You make the difference.
Love, Peace & Happiness,
Deborah
ps: To Laureen & Sharon - the flowers are beautiful Al loves them and they brought big smiles
Allie
Wednesday, April 7, 2010
Monday, March 15, 2010
Pain, Despair, the Mall & Good Friends
Hi Everyone,
This morning I came out to the kitchen looked out the window at the beautiful sun shining and felt so good. The good feeling lasted about five seconds and then the sadness fell around me like fog. My girl is still unable to move, breathe on her own and is sad every day. So this is how Allie feels in the morning. See my nights are so interrupted with suctioning and all of Allie's other care that I don't think I've ever really had time to have that false sense of "all's well with the world this morning". I was up last night as much as ever. Still...I don't know if it was that I slept in later than usual, the incredible sun, the time change, the fact that we spent a lot of time outside yesterday or just that time is a healer even in the worst of situations. For those five seconds life was great. I do remember how it feels and am going to do my best to hold on to that and practice stretching out those five seconds!!
Allie's pain continues to haunt her more days than not. She has some stronger meds now and has chosen to take them a few times although she remains very conservative with their use as she worries about addiction. She has had some shortness of breath when she's up, which is a new problem, but if I temporarily increase the volume on her ventilator she seems to be fine.
The last couple of weeks Allie has shown some incredible progress in her desire to try new things. She has decided to try and do some painting. Auntie Vicky helped us as we shopped at Beverly's for some supplies. John F. has given Allie an easle and dad is working on a way to adapt it so that Allie can reach it. I can't wait to see her creations. She has always been artistic and she certainly has a lot to express.
Last week Allie surprised me again by saying she wanted to go to the mall to buy a gift for Brianna, who just had her 21st birthday. Now anyone that knows Allie, knows she is no stranger to the mall! But since her accident she has refused to go. She's very uncomfortable with the way she looks and hates it when people stare. So with Jordan along to help (thanks Jordan) we headed out. Jordan, by the way, has become quite competent at transfers and has even suctioned. So we went to the bank in town where Allie had business to take care of and did so with the help of Carmen (thanks Carmen). And then we drove to the Capitola Mall. It was wonderful to see Allie taking the time to not only shop for Brianna but a few things for herself too. We had dinner at Chili's and headed home. It was a great day. All three of us had a lot of fun. This trip was yet another milestone for Allie. Sure some people stare but not everyone. Most people are sensitive and do what they can to ease her discomfort. She still has just a whisper but is increasingly more comfortable with communicating with people and most seem to have no problem understanding her. I watch her take control more and more. Ordering food in a restaurant or talking with a banker a few months ago was so much harder for her than it is now.
Friday night Allie had a little surprise party for Brianna. Allie chose decorations and directed us as to where they should go. It was a small gathering of a few friends but a very good time was had by all. The thing about fun times is that with many ups there are the downs. That night Allie and I talked until about four in the am. Her despair so great. She asks me such difficult questions that I am grateful it is dark, so she can't see the tears streaming down my face. She wants the same things we all want. She's not asking for anything unreasonable. She doesn't want riches. She doesn't want to be famous. She doesn't want to be powerful. She wants to go be with her friends. She wants to work and go to school. She wants someone to love and love her. She wants to be a wife and mom someday. She wants to walk and breathe on her own. When mom do you think they will come up with a treatment for me? How will we be able to pay for it? Do you really believe it is going to happen? I don't want to live like this for too much longer mom. It won't be worth it if it goes on too long. Allie's determination and then feelings of hopelessness are so strong. Her arguments so compelling. Her insights so profound. The things she talks about, her outlook, frustration and emotional pain and logic astounds me. I am challenged by her in one way or another every day. We are not a family that gives up. We will not give up and even on the most difficult of days we must find faith and if she can't, it is our job to help her. Lucky for us we have all of you to help.
The last few days we've been getting out and soaking up a bit of the afternoon sun. It sure helps to get outside. We continue to have visits, good wishes, great meals, letters and support from friends and family. We are so incredibly blessed to have such a strong support group. Allie and I use to argue about which of us had a bigger and better group of friends. It seems that now the groups have merged and we can now together enjoy these amazing people.
I am so excited about spring and summer. I am hoping that Al's neck will be strong enough soon so that we can get out for some more adventures. It is still unclear when and where Allie will be going for her rehab but we should be hearing something soon.
Time is so much more powerful than I ever realized. A year to someone fifty so much shorter than to someone twenty. A day so much more precious to someone that is having their last day, than to someone that is suffering and tolerating their way through the day.
Thank you for all your prayers, love & support. We could not do this without you, please know that.
Love, Peace & Happiness,
Deborah
This morning I came out to the kitchen looked out the window at the beautiful sun shining and felt so good. The good feeling lasted about five seconds and then the sadness fell around me like fog. My girl is still unable to move, breathe on her own and is sad every day. So this is how Allie feels in the morning. See my nights are so interrupted with suctioning and all of Allie's other care that I don't think I've ever really had time to have that false sense of "all's well with the world this morning". I was up last night as much as ever. Still...I don't know if it was that I slept in later than usual, the incredible sun, the time change, the fact that we spent a lot of time outside yesterday or just that time is a healer even in the worst of situations. For those five seconds life was great. I do remember how it feels and am going to do my best to hold on to that and practice stretching out those five seconds!!
Allie's pain continues to haunt her more days than not. She has some stronger meds now and has chosen to take them a few times although she remains very conservative with their use as she worries about addiction. She has had some shortness of breath when she's up, which is a new problem, but if I temporarily increase the volume on her ventilator she seems to be fine.
The last couple of weeks Allie has shown some incredible progress in her desire to try new things. She has decided to try and do some painting. Auntie Vicky helped us as we shopped at Beverly's for some supplies. John F. has given Allie an easle and dad is working on a way to adapt it so that Allie can reach it. I can't wait to see her creations. She has always been artistic and she certainly has a lot to express.
Last week Allie surprised me again by saying she wanted to go to the mall to buy a gift for Brianna, who just had her 21st birthday. Now anyone that knows Allie, knows she is no stranger to the mall! But since her accident she has refused to go. She's very uncomfortable with the way she looks and hates it when people stare. So with Jordan along to help (thanks Jordan) we headed out. Jordan, by the way, has become quite competent at transfers and has even suctioned. So we went to the bank in town where Allie had business to take care of and did so with the help of Carmen (thanks Carmen). And then we drove to the Capitola Mall. It was wonderful to see Allie taking the time to not only shop for Brianna but a few things for herself too. We had dinner at Chili's and headed home. It was a great day. All three of us had a lot of fun. This trip was yet another milestone for Allie. Sure some people stare but not everyone. Most people are sensitive and do what they can to ease her discomfort. She still has just a whisper but is increasingly more comfortable with communicating with people and most seem to have no problem understanding her. I watch her take control more and more. Ordering food in a restaurant or talking with a banker a few months ago was so much harder for her than it is now.
Friday night Allie had a little surprise party for Brianna. Allie chose decorations and directed us as to where they should go. It was a small gathering of a few friends but a very good time was had by all. The thing about fun times is that with many ups there are the downs. That night Allie and I talked until about four in the am. Her despair so great. She asks me such difficult questions that I am grateful it is dark, so she can't see the tears streaming down my face. She wants the same things we all want. She's not asking for anything unreasonable. She doesn't want riches. She doesn't want to be famous. She doesn't want to be powerful. She wants to go be with her friends. She wants to work and go to school. She wants someone to love and love her. She wants to be a wife and mom someday. She wants to walk and breathe on her own. When mom do you think they will come up with a treatment for me? How will we be able to pay for it? Do you really believe it is going to happen? I don't want to live like this for too much longer mom. It won't be worth it if it goes on too long. Allie's determination and then feelings of hopelessness are so strong. Her arguments so compelling. Her insights so profound. The things she talks about, her outlook, frustration and emotional pain and logic astounds me. I am challenged by her in one way or another every day. We are not a family that gives up. We will not give up and even on the most difficult of days we must find faith and if she can't, it is our job to help her. Lucky for us we have all of you to help.
The last few days we've been getting out and soaking up a bit of the afternoon sun. It sure helps to get outside. We continue to have visits, good wishes, great meals, letters and support from friends and family. We are so incredibly blessed to have such a strong support group. Allie and I use to argue about which of us had a bigger and better group of friends. It seems that now the groups have merged and we can now together enjoy these amazing people.
I am so excited about spring and summer. I am hoping that Al's neck will be strong enough soon so that we can get out for some more adventures. It is still unclear when and where Allie will be going for her rehab but we should be hearing something soon.
Time is so much more powerful than I ever realized. A year to someone fifty so much shorter than to someone twenty. A day so much more precious to someone that is having their last day, than to someone that is suffering and tolerating their way through the day.
Thank you for all your prayers, love & support. We could not do this without you, please know that.
Love, Peace & Happiness,
Deborah
Sunday, January 31, 2010
Happy New Year?
Hi Everyone,
I know some of you look for updates and we appreciate you so much. I apologize that it's been so long.
I hope the holidays were wonderful, fun and relaxing for you all. December was a great month for visitors. Many of Allie's friends were home from college and it was great for her to see people she hadn't seen in a while. Christmas for us was a lot more low key than in years past, but we were thankful to be together and our tree was beautiful. This year we tried something different. Instead of "santa" going crazy and "delivering" a bunch of gifts we took Allie's suggestion and did secret santa. We each bought for only one other person in the family. We wrote short lists and set a small dollar limit. I ventured out to the mall once, but other than that Allie and I did our shopping online. The following day our extended family came..aunts, uncles and cousins and we played our annual white elephant gift exchange. Allie was the first to begin the "stealing". She was much more comfortable with the crowd than on Thanksgiving and everyone had a great time.
I'd love to say that we toasted with champagne and banged pots to bring in the new year but things for us didn't quite go that way. To be honest, I really didn't even realize it was new years eve until later that afternoon. I got a call that morning from my brother that mom wasn't doing well and that maybe I should head over to see her. She'd been kind of up and down for a while and in and out of the hospital but the drive to Walnut Creek or Concord took longer than I was comfortable leaving Allie, so I hadn't been able to see her much. So anyway, on the drive over listening to the radio I learned that it was new years eve. I spent a couple hours visiting with my mom. I brought Dixie my dog. She had a way of cheering up grandma more than any of us did! I headed home only to find that Allie was having some difficulty with her breathing. We transferred her to her chair hoping that sitting upright would help but the high pressures continued. We feared that her trachea had begun closing again. At one point, she briefly passed out and we called 911. Then she seemed okay so we cancelled and began the discussion about what to do next. After our last experience we were all a bit apprehensive about going to Dominican and Allie was pretty set on not going there! It was clear we could not vent her and we needed to do something, but we wanted to do the right thing. We talked about driving her to Kaiser. We weren't sure which scenario scared us the most. The trip over the hill (on a holiday) bagging her all the way. What if she were to go into cardiac arrest? What if we brought her to Dominican and we had to sit for hours again and wait for transfer to Kaiser? What if we were to have a repeat of her last visit there? Even though we had cancelled the 911 call, our friends from Felton Fire showed up anyway thinking we may need some help. We did!! They were, to say the least, concerned about our idea of driving over the hill but supportive and understood our concerns. Attempts were made to secure an ambulance over the hill but none were available. Allie really didn't want to get in an ambulance anyway and since she was in her chair wanted us to drive her where ever we decided to go. They made more calls and a paramedic supervisor (sorry I don't remember his name) showed up. He made a call to Dominican's ER and assured us that they would be ready for us and that it was the safest decision. We put it to a vote and Allie, Ron, Adam and I all voted that a trip over the hill was maybe not the brightest decision. We drove to Dominican in our van and the supervisor drove along side to make sure we got there safely. I am very pleased to report that our experience there this time was awesome. There was a vent and an RT ready to assist Allie with her breathing. Plans begun immediately to transfer Allie to Kaiser. Kaiser sent an air ambulance/helicopter and this time I was able to sit right next to Allie (actually she refused to go otherwise). She was scared but calm during the short ride.
When we arrived at Kaiser the same doc that was in ICU last time had heard she was coming and stayed late to be there when we arrived. Staff was on hand and all emergency equipment ready. I am extremely pleased to say that the ride and arrival went without incident. The air nurses were great and Allie was comfortably transferred from their hands to her hospital bed. What a dramatic change from last time!
After things quieted down and people began to leave and it was just a nurse, Allie and me in the room, she said mom look at the clock, I turned and looked, it was two minutes to 12. Happy New Year? We weren't so sure.
It was a long and quiet weekend. Friends and family visited and we watched movies to pass the time. Monday, Allie went into surgery. Her docs found that the temporary tube that had been placed to maintain her airway after her last surgery, had shifted and was laying against her tissue wall and preventing her from getting sufficient air. They replaced the tube with her regular style trach and removed just a small amount of granulation this time. Al sailed through the surgery.
We prayed and crossed our fingers...maybe she'd get her voice back now. Over the next couple of days it became clear that wasn't going to happen. We were relieved that she was doing well, but we were crushed that she still couldn't speak.
As always it was wonderful to get back home. Since then Allie's been back for a check up and her trachea looks really good. Things seemed to have calmed down in there and her doctor has promised to look into the possibility of a smaller trach tube that might allow Al to talk.
On January 17 my mom decided that the battle she had been fighting was a losing one and that she was too tired to do it anymore. I joined my sister's and brother as we spent the afternoon saying goodbye and doing our best to see that my mother's passing was as pain-free and gentle as it could be. Our hearts broke and the grief almost unbearable, as she peacefully went to sleep. It was the longest amount of time I'd been away from Allie since her accident. When I got home she told me that while she was sorry for our loss it made her happy to know that she now had another guardian angel to watch over her.
The last few weeks Allie has been suffering from an increasing amount of back and now arm pain. Pain in a paralyzed person is, quite possibly the cruelest part of the injury, I sometimes think. Her dad and I like to think that the spreading of the pain is her nerves waking up and awake nerves give us hope. I know there are many people out there working on a cure/treatment for spinal cord injuries...thank you and please hurry!
Allie was able to attend her Grandma's funeral. We gave her the option to hang out in the back of the church with dad in case she needed suctioning or became anxious, and I was very proud when she elected to sit up front with the rest of the family. After the service we went to Auntie Vicky's and were able to get Al into the house with the help of a portable ramp that Kerry got for her (thank you Kerry), from Jennifer who generously contacted us via this blog (thank you Jennifer). Michael from Mac Cal has also offered to manufacture or purchase and modify ramps for Allie, so we expect she should have access to many of the places she wants to go, before too long. It was a long day for Allie (as was for all of us) and she did fantastic. She's abandoned her neck collar completely now, which is awesome and shows that she has gained a bit more strength in her neck. Driving still does take its toll though, and her brother and sister took turns holding her head during turns and over bumps in the road. When we got home from the service and Allie was tucked back into bed, I told her how beautiful she'd looked and how proud I was of her. She looked at me with tears in her eyes and said "mom I hate being like this". "I know you do baby, I hate it too" was all I could say in response.
So far 2010 has brought Allie another trip to the hospital, the loss of her grandma, more pain, no visible improvement in her state of paralysis and still nothing more than a slight whisper. On the other hand, we have had visits from family and friends that previously had been reluctant/afraid/resistant to visit (my daughter's ability to put people at ease never ceases to astound me). Fewer mornings are filled with overwhelming sadness and we continue to get out a little more.
Auntie Sandi bought Allie a clock and it hangs in her bedroom where she can see it everyday. I will leave you with the words written on the clock --
Every Moment Holds The Possibility Of A Miracle
Here's to us all. Happy New Year. We love you and we thank you for your continued and amazing support.
Love, Peace & Happiness,
Deborah
I know some of you look for updates and we appreciate you so much. I apologize that it's been so long.
I hope the holidays were wonderful, fun and relaxing for you all. December was a great month for visitors. Many of Allie's friends were home from college and it was great for her to see people she hadn't seen in a while. Christmas for us was a lot more low key than in years past, but we were thankful to be together and our tree was beautiful. This year we tried something different. Instead of "santa" going crazy and "delivering" a bunch of gifts we took Allie's suggestion and did secret santa. We each bought for only one other person in the family. We wrote short lists and set a small dollar limit. I ventured out to the mall once, but other than that Allie and I did our shopping online. The following day our extended family came..aunts, uncles and cousins and we played our annual white elephant gift exchange. Allie was the first to begin the "stealing". She was much more comfortable with the crowd than on Thanksgiving and everyone had a great time.
I'd love to say that we toasted with champagne and banged pots to bring in the new year but things for us didn't quite go that way. To be honest, I really didn't even realize it was new years eve until later that afternoon. I got a call that morning from my brother that mom wasn't doing well and that maybe I should head over to see her. She'd been kind of up and down for a while and in and out of the hospital but the drive to Walnut Creek or Concord took longer than I was comfortable leaving Allie, so I hadn't been able to see her much. So anyway, on the drive over listening to the radio I learned that it was new years eve. I spent a couple hours visiting with my mom. I brought Dixie my dog. She had a way of cheering up grandma more than any of us did! I headed home only to find that Allie was having some difficulty with her breathing. We transferred her to her chair hoping that sitting upright would help but the high pressures continued. We feared that her trachea had begun closing again. At one point, she briefly passed out and we called 911. Then she seemed okay so we cancelled and began the discussion about what to do next. After our last experience we were all a bit apprehensive about going to Dominican and Allie was pretty set on not going there! It was clear we could not vent her and we needed to do something, but we wanted to do the right thing. We talked about driving her to Kaiser. We weren't sure which scenario scared us the most. The trip over the hill (on a holiday) bagging her all the way. What if she were to go into cardiac arrest? What if we brought her to Dominican and we had to sit for hours again and wait for transfer to Kaiser? What if we were to have a repeat of her last visit there? Even though we had cancelled the 911 call, our friends from Felton Fire showed up anyway thinking we may need some help. We did!! They were, to say the least, concerned about our idea of driving over the hill but supportive and understood our concerns. Attempts were made to secure an ambulance over the hill but none were available. Allie really didn't want to get in an ambulance anyway and since she was in her chair wanted us to drive her where ever we decided to go. They made more calls and a paramedic supervisor (sorry I don't remember his name) showed up. He made a call to Dominican's ER and assured us that they would be ready for us and that it was the safest decision. We put it to a vote and Allie, Ron, Adam and I all voted that a trip over the hill was maybe not the brightest decision. We drove to Dominican in our van and the supervisor drove along side to make sure we got there safely. I am very pleased to report that our experience there this time was awesome. There was a vent and an RT ready to assist Allie with her breathing. Plans begun immediately to transfer Allie to Kaiser. Kaiser sent an air ambulance/helicopter and this time I was able to sit right next to Allie (actually she refused to go otherwise). She was scared but calm during the short ride.
When we arrived at Kaiser the same doc that was in ICU last time had heard she was coming and stayed late to be there when we arrived. Staff was on hand and all emergency equipment ready. I am extremely pleased to say that the ride and arrival went without incident. The air nurses were great and Allie was comfortably transferred from their hands to her hospital bed. What a dramatic change from last time!
After things quieted down and people began to leave and it was just a nurse, Allie and me in the room, she said mom look at the clock, I turned and looked, it was two minutes to 12. Happy New Year? We weren't so sure.
It was a long and quiet weekend. Friends and family visited and we watched movies to pass the time. Monday, Allie went into surgery. Her docs found that the temporary tube that had been placed to maintain her airway after her last surgery, had shifted and was laying against her tissue wall and preventing her from getting sufficient air. They replaced the tube with her regular style trach and removed just a small amount of granulation this time. Al sailed through the surgery.
We prayed and crossed our fingers...maybe she'd get her voice back now. Over the next couple of days it became clear that wasn't going to happen. We were relieved that she was doing well, but we were crushed that she still couldn't speak.
As always it was wonderful to get back home. Since then Allie's been back for a check up and her trachea looks really good. Things seemed to have calmed down in there and her doctor has promised to look into the possibility of a smaller trach tube that might allow Al to talk.
On January 17 my mom decided that the battle she had been fighting was a losing one and that she was too tired to do it anymore. I joined my sister's and brother as we spent the afternoon saying goodbye and doing our best to see that my mother's passing was as pain-free and gentle as it could be. Our hearts broke and the grief almost unbearable, as she peacefully went to sleep. It was the longest amount of time I'd been away from Allie since her accident. When I got home she told me that while she was sorry for our loss it made her happy to know that she now had another guardian angel to watch over her.
The last few weeks Allie has been suffering from an increasing amount of back and now arm pain. Pain in a paralyzed person is, quite possibly the cruelest part of the injury, I sometimes think. Her dad and I like to think that the spreading of the pain is her nerves waking up and awake nerves give us hope. I know there are many people out there working on a cure/treatment for spinal cord injuries...thank you and please hurry!
Allie was able to attend her Grandma's funeral. We gave her the option to hang out in the back of the church with dad in case she needed suctioning or became anxious, and I was very proud when she elected to sit up front with the rest of the family. After the service we went to Auntie Vicky's and were able to get Al into the house with the help of a portable ramp that Kerry got for her (thank you Kerry), from Jennifer who generously contacted us via this blog (thank you Jennifer). Michael from Mac Cal has also offered to manufacture or purchase and modify ramps for Allie, so we expect she should have access to many of the places she wants to go, before too long. It was a long day for Allie (as was for all of us) and she did fantastic. She's abandoned her neck collar completely now, which is awesome and shows that she has gained a bit more strength in her neck. Driving still does take its toll though, and her brother and sister took turns holding her head during turns and over bumps in the road. When we got home from the service and Allie was tucked back into bed, I told her how beautiful she'd looked and how proud I was of her. She looked at me with tears in her eyes and said "mom I hate being like this". "I know you do baby, I hate it too" was all I could say in response.
So far 2010 has brought Allie another trip to the hospital, the loss of her grandma, more pain, no visible improvement in her state of paralysis and still nothing more than a slight whisper. On the other hand, we have had visits from family and friends that previously had been reluctant/afraid/resistant to visit (my daughter's ability to put people at ease never ceases to astound me). Fewer mornings are filled with overwhelming sadness and we continue to get out a little more.
Auntie Sandi bought Allie a clock and it hangs in her bedroom where she can see it everyday. I will leave you with the words written on the clock --
Every Moment Holds The Possibility Of A Miracle
Here's to us all. Happy New Year. We love you and we thank you for your continued and amazing support.
Love, Peace & Happiness,
Deborah
Friday, December 11, 2009
An Ambulance, a Helicopter and a Movie
Dear Family & Friends,
As many of you know, the day of Allie's accident she was flown via helicopter from Felton to Valley Medical. When I got the call I told myself all the way to the hospital that it had to be a mistake. It wasn't Allie's car and it was not her that had been flown. When we arrived, the helicopter was still on the roof. Still, I told myself it was not my baby girl that had arrived in it. When we walked in the ER the place was packed. I went up to someone and said that we heard our daughter was there. I told them her name. They quickly brought us in. My heart sank. I felt sick.
Since that day the sound of a helicopter brings tears to my eyes. While we were at Valley Med. we heard them on a regular basis, but never did I get use to it. I tried to tell myself that it was a good thing. Without the speed and care of the air ambulance, Allie likely would not have made it. Still, the thought of her without me or her dad. She must have been so afraid. Fortunately, she remembers nothing of the experience but that gives me little comfort.
Monday before last, Allie started experiencing high pressure alarms and was having much more difficulty breathing than usual. It didn't appear that she had much in the way of secretions though. We moved her back from her chair vent to the bedside hoping that the moist air might help. She did okay through the night, but woke up in the morning unable to get a breath from her vent. I bagged her on and off, but every attempt to put her back on the vent failed. Adam was home and I called for him to help. We took turns giving her breaths from the ambu bag, while I called an ambulance and got things ready to go. Adam called Samantha so they could follow behind to the hospital.
The Paramedics and Felton Fire arrived. They were great. I got to ride in the back with Allie to give her breaths and she was calm and appeared very brave. We arrived at Dominican ER. Her friends arrived and took turns keeping her company and trying to keep her spirits up.
Attempts were made to suction and put her back on her vent to no avail. I requested she be transferred to Kaiser Santa Clara thinking they were better equipped to handle Allie's special needs. While I was out of the room (talking with Kaiser) she was being given breaths by someone else. When I came back in the room she said she couldn't breathe and was going to faint. I saw that the bag was not completely attached to her breathing tube. I don't know how long it had been like that. We got it attached and gave her a breath. Too late. She went out. Michelle, Jordan and I watched in fear, as it seemed certain that this time, she would be taken away from us.
In an all too familiar scene the room filled with people. I remember yelling this time. I was not only scared but very angry. I heard someone say she had no pulse. She was given CPR. I heard someone say he felt a pulse but it was thready. The next thing I knew she was gritting her teeth and I asked for a bite stick. By the time I got one, she had bitten her tongue very badly. I don't know how long she was gone this time.
She was moved to ICU. She wouldn't be going anywhere right away. It was a long night. Some how, I felt we were losing time. She was put on a vent with altered settings and given much needed potassium (turns out her BP Meds. deplete her of potassium).
The next day the decision was made to transfer her to Kaiser, via helicopter. She was adamant that she would not go. She was sure she would either die from lack of breath on the way or that they would crash. We tried to assure her that it was the safest way. But, inside the thought of the necessity of another helicopter ride made me want to crawl in a hole. Allie wanted to go home. She was done. No more she begged me. "I can't do this anymore mom just please take me home" she cried and it broke my heart in more pieces than it is already. Finally, she agreed but only if I could go with her. I told her I'd do my best to make that happen. Ron, went ahead over the hill to be there in case they wouldn't let me ride with Allie. Auntie Sandi and Jordan went as well. My sisters Vicky and Pam stayed behind to see us off in hopes that they would allow me to go, and to give me a ride over the hill just in case they wouldn't. I was able to convince them to let me go. Allie was calmer and did pretty good until we got in and she saw that I had to ride in the front and we couldn't see each other. She began to panic. It seemed a very long ride. I could hear what the nurses in the back were saying, but I couldn't talk to Allie. I could tell by the nurses conversation that she was in serious respiratory distress.
When we arrived things happened quickly. Nurses appeared on the roof to greet us. I was told that she passed out in the helicopter, but briefly. We wheeled her into ICU and picked up Ron who was waiting, along the way. She was moved from the gurney onto her bed. Dad and I were there. She had the help she needed. She was going to be okay. Accept that she kept saying she couldn't breathe. I looked into her face and tried to tell her to relax and that she would be okay. Then we saw her eyes go into that fixed stare. She was going away again. Code Blue was called. The room once again filled with people. She was given something to jump start her heart and CPR. All that her dad and I could do was stay close to her, rubbing her head and begging her not to give up and leave us.
It is impossible to know how long it would have been before Allie came to, because of the drugs she had been given. Her ENT and Pulmonary Dr.'s were called in. While she was out, they took a look in her airway. The stenosis (granulation tissue, scar tissue or whatever you want to call it) that was present in her trachea just below where her trach tube ended, had gotten so bad her airway was nearly closed. This is the area that has been preventing Allie from having enough air to pass up over her vocal chords so that she can speak. It was really amazing that she was getting any air at all. Also, from the amount of bagging she had been receiving over the last 24 hours, her tissue was very dry. They performed an emergency procedure at bedside removing dried mucus and enough tissue so that she could breath while they planned the next step. Ron and I watched as they removed her trach and she was left without air over and over again for what seemed to us long periods of time while they went down her trachea with their instruments. Then as they tried different sizes of tubes to see what would fit in her small airway. With each attempt our hearts sank. Our fear was the type that makes you feel as if you are coming out of your skin. I could feel Ron's terror and his overwhelming desire to do something to help. We were so very helpless to do anything to change our baby's situation. All of our hopes and trust in God and three doctors that we barely know. Then one of her doctor's looked over at me and gave me the thumb's up. They had a tube in her that would fit and allow air to reach her lungs. For now she was safe.
The next day the decision was made to perform laser surgery to hopefully open up Allie's airway permanently. That evening Ron and I waited almost two hours for what was suppose to be a 45 minute procedure. Friends and family came by or called for updates. As time went by, the process of watching the door waiting for the Doctors to come and talk to us, was something I was getting to know well. I knew that as soon as I saw their faces, I would know my girl pulled through again.
The procedure was a success. The tissue was lasered, cut and injected with steroids. There is no guarantee of course that the tissue will not "grow" and close up her airway again. Allie's body has an amazing ability to heal and that is pretty much what her tissue is trying to do -- fighting that artificial piece of plastic in her body where it doesn't belong, but is necessary to keep her alive. The docs explained to us that another temporary tube had been placed instead of her regular trach to try and maintain as much of the "space" that had been made.
Now most people after an ordeal and surgery such as Allie's would sleep for a while. But, not our Al. By the time we had finished talking to the doctors and got to her room she was wide awake and giving the nurses a hard time. She hates to wake up and see that her mom isn't there! We knew then that our Allie was really back.
We got to bring Allie home the next day. Uncle Doug and Auntie Sandi came to the hospital to spend the day and see her safely in her van for the trip home to the redwoods.
Since home Allie's been doing pretty good. Her breathing via her vent is fine. She only wears her collar when she's up in her chair. Trips in the van are less uncomfortable for her. She's getting more use to the lift. She's trying very hard to relax during transfers but still hates them.
Wednesday Allie asked if we could go to the movies (Blind Side great flick by the way). Adam, Keenan and I loaded up and off we went. Ron met us there and after we went out for Chinese. Her resilence is mind boggling.
Torture is the word that comes to mind, when I think of all Allie has gone through. I wonder when the steps back will be smaller steps and those forward bigger. I wonder when her smiles will be more frequent than her looks and cries of fear, loss, sadness and pain.
She continues to grieve for her former life. She watches friends carry on with their lives, busy with school, jobs and their social scene. She has a great feeling of loss for those friends too uncomfortable to continue a friendship with her. She's grateful for those that can. I know in time she will form new friendships like the one with Connor who understands much more about what she's going through than any of us can.
Allie's talking about taking some online classes. Her laptop broke in the accident so we are looking into getting her a new one and finding some hardware and software that will be appropriate for her. Continuing her education will be a great boost for her.
As a mother, I continue to pressure her. I tell her to eat more, drink more water, be more positive, and to try and tough it through things. The real truth is that everyday I ask myself how does she do it? She amazes me beyond belief and I could not be prouder.
I want to give a very special thanks to just a few of the people that have helped bring light to this most difficult journey:
Kathy who continues to come every morning to give Allie range of motion
Uncle Doug, Auntie Vicky & Auntie Sandi for their regular visits, love, patience and the comfort they give their niece and relief to Ron and I
Kelly, Wendy & Kathy for arranging meals for us and to all of you who provided them
Kerry for your regular visits, mochas for me and love and crossiants for Allie
Sharon for your thoughtful and fun gifts for Allie
All of you that have and continue to contribute to Allie's SNT
Bob for the moral support and all the help getting us through the system
All of Allie's friends that love her and continue to visit, include her in things and help out
Stacey for her continued support and help
June for your words of faith and prayers for Allie
The Dalton's for being the meals go-between
Phyllis for your special love for Allie
Susan for the treats and morning visits
My Anjel Banjel for running errands and being such a good big sis
Adam for help with transfers that make your sister feel safe
My husband who puts up with me and Allie even when we are our most difficult
All of you that have said prayers, wished Allie well, and have kept us in your thoughts
Thank you. We are so lucky and blessed to have you.
Please continue with us to believe in Allie's recovery.
Peace, Love & Happiness,
Deborah
As many of you know, the day of Allie's accident she was flown via helicopter from Felton to Valley Medical. When I got the call I told myself all the way to the hospital that it had to be a mistake. It wasn't Allie's car and it was not her that had been flown. When we arrived, the helicopter was still on the roof. Still, I told myself it was not my baby girl that had arrived in it. When we walked in the ER the place was packed. I went up to someone and said that we heard our daughter was there. I told them her name. They quickly brought us in. My heart sank. I felt sick.
Since that day the sound of a helicopter brings tears to my eyes. While we were at Valley Med. we heard them on a regular basis, but never did I get use to it. I tried to tell myself that it was a good thing. Without the speed and care of the air ambulance, Allie likely would not have made it. Still, the thought of her without me or her dad. She must have been so afraid. Fortunately, she remembers nothing of the experience but that gives me little comfort.
Monday before last, Allie started experiencing high pressure alarms and was having much more difficulty breathing than usual. It didn't appear that she had much in the way of secretions though. We moved her back from her chair vent to the bedside hoping that the moist air might help. She did okay through the night, but woke up in the morning unable to get a breath from her vent. I bagged her on and off, but every attempt to put her back on the vent failed. Adam was home and I called for him to help. We took turns giving her breaths from the ambu bag, while I called an ambulance and got things ready to go. Adam called Samantha so they could follow behind to the hospital.
The Paramedics and Felton Fire arrived. They were great. I got to ride in the back with Allie to give her breaths and she was calm and appeared very brave. We arrived at Dominican ER. Her friends arrived and took turns keeping her company and trying to keep her spirits up.
Attempts were made to suction and put her back on her vent to no avail. I requested she be transferred to Kaiser Santa Clara thinking they were better equipped to handle Allie's special needs. While I was out of the room (talking with Kaiser) she was being given breaths by someone else. When I came back in the room she said she couldn't breathe and was going to faint. I saw that the bag was not completely attached to her breathing tube. I don't know how long it had been like that. We got it attached and gave her a breath. Too late. She went out. Michelle, Jordan and I watched in fear, as it seemed certain that this time, she would be taken away from us.
In an all too familiar scene the room filled with people. I remember yelling this time. I was not only scared but very angry. I heard someone say she had no pulse. She was given CPR. I heard someone say he felt a pulse but it was thready. The next thing I knew she was gritting her teeth and I asked for a bite stick. By the time I got one, she had bitten her tongue very badly. I don't know how long she was gone this time.
She was moved to ICU. She wouldn't be going anywhere right away. It was a long night. Some how, I felt we were losing time. She was put on a vent with altered settings and given much needed potassium (turns out her BP Meds. deplete her of potassium).
The next day the decision was made to transfer her to Kaiser, via helicopter. She was adamant that she would not go. She was sure she would either die from lack of breath on the way or that they would crash. We tried to assure her that it was the safest way. But, inside the thought of the necessity of another helicopter ride made me want to crawl in a hole. Allie wanted to go home. She was done. No more she begged me. "I can't do this anymore mom just please take me home" she cried and it broke my heart in more pieces than it is already. Finally, she agreed but only if I could go with her. I told her I'd do my best to make that happen. Ron, went ahead over the hill to be there in case they wouldn't let me ride with Allie. Auntie Sandi and Jordan went as well. My sisters Vicky and Pam stayed behind to see us off in hopes that they would allow me to go, and to give me a ride over the hill just in case they wouldn't. I was able to convince them to let me go. Allie was calmer and did pretty good until we got in and she saw that I had to ride in the front and we couldn't see each other. She began to panic. It seemed a very long ride. I could hear what the nurses in the back were saying, but I couldn't talk to Allie. I could tell by the nurses conversation that she was in serious respiratory distress.
When we arrived things happened quickly. Nurses appeared on the roof to greet us. I was told that she passed out in the helicopter, but briefly. We wheeled her into ICU and picked up Ron who was waiting, along the way. She was moved from the gurney onto her bed. Dad and I were there. She had the help she needed. She was going to be okay. Accept that she kept saying she couldn't breathe. I looked into her face and tried to tell her to relax and that she would be okay. Then we saw her eyes go into that fixed stare. She was going away again. Code Blue was called. The room once again filled with people. She was given something to jump start her heart and CPR. All that her dad and I could do was stay close to her, rubbing her head and begging her not to give up and leave us.
It is impossible to know how long it would have been before Allie came to, because of the drugs she had been given. Her ENT and Pulmonary Dr.'s were called in. While she was out, they took a look in her airway. The stenosis (granulation tissue, scar tissue or whatever you want to call it) that was present in her trachea just below where her trach tube ended, had gotten so bad her airway was nearly closed. This is the area that has been preventing Allie from having enough air to pass up over her vocal chords so that she can speak. It was really amazing that she was getting any air at all. Also, from the amount of bagging she had been receiving over the last 24 hours, her tissue was very dry. They performed an emergency procedure at bedside removing dried mucus and enough tissue so that she could breath while they planned the next step. Ron and I watched as they removed her trach and she was left without air over and over again for what seemed to us long periods of time while they went down her trachea with their instruments. Then as they tried different sizes of tubes to see what would fit in her small airway. With each attempt our hearts sank. Our fear was the type that makes you feel as if you are coming out of your skin. I could feel Ron's terror and his overwhelming desire to do something to help. We were so very helpless to do anything to change our baby's situation. All of our hopes and trust in God and three doctors that we barely know. Then one of her doctor's looked over at me and gave me the thumb's up. They had a tube in her that would fit and allow air to reach her lungs. For now she was safe.
The next day the decision was made to perform laser surgery to hopefully open up Allie's airway permanently. That evening Ron and I waited almost two hours for what was suppose to be a 45 minute procedure. Friends and family came by or called for updates. As time went by, the process of watching the door waiting for the Doctors to come and talk to us, was something I was getting to know well. I knew that as soon as I saw their faces, I would know my girl pulled through again.
The procedure was a success. The tissue was lasered, cut and injected with steroids. There is no guarantee of course that the tissue will not "grow" and close up her airway again. Allie's body has an amazing ability to heal and that is pretty much what her tissue is trying to do -- fighting that artificial piece of plastic in her body where it doesn't belong, but is necessary to keep her alive. The docs explained to us that another temporary tube had been placed instead of her regular trach to try and maintain as much of the "space" that had been made.
Now most people after an ordeal and surgery such as Allie's would sleep for a while. But, not our Al. By the time we had finished talking to the doctors and got to her room she was wide awake and giving the nurses a hard time. She hates to wake up and see that her mom isn't there! We knew then that our Allie was really back.
We got to bring Allie home the next day. Uncle Doug and Auntie Sandi came to the hospital to spend the day and see her safely in her van for the trip home to the redwoods.
Since home Allie's been doing pretty good. Her breathing via her vent is fine. She only wears her collar when she's up in her chair. Trips in the van are less uncomfortable for her. She's getting more use to the lift. She's trying very hard to relax during transfers but still hates them.
Wednesday Allie asked if we could go to the movies (Blind Side great flick by the way). Adam, Keenan and I loaded up and off we went. Ron met us there and after we went out for Chinese. Her resilence is mind boggling.
Torture is the word that comes to mind, when I think of all Allie has gone through. I wonder when the steps back will be smaller steps and those forward bigger. I wonder when her smiles will be more frequent than her looks and cries of fear, loss, sadness and pain.
She continues to grieve for her former life. She watches friends carry on with their lives, busy with school, jobs and their social scene. She has a great feeling of loss for those friends too uncomfortable to continue a friendship with her. She's grateful for those that can. I know in time she will form new friendships like the one with Connor who understands much more about what she's going through than any of us can.
Allie's talking about taking some online classes. Her laptop broke in the accident so we are looking into getting her a new one and finding some hardware and software that will be appropriate for her. Continuing her education will be a great boost for her.
As a mother, I continue to pressure her. I tell her to eat more, drink more water, be more positive, and to try and tough it through things. The real truth is that everyday I ask myself how does she do it? She amazes me beyond belief and I could not be prouder.
I want to give a very special thanks to just a few of the people that have helped bring light to this most difficult journey:
Kathy who continues to come every morning to give Allie range of motion
Uncle Doug, Auntie Vicky & Auntie Sandi for their regular visits, love, patience and the comfort they give their niece and relief to Ron and I
Kelly, Wendy & Kathy for arranging meals for us and to all of you who provided them
Kerry for your regular visits, mochas for me and love and crossiants for Allie
Sharon for your thoughtful and fun gifts for Allie
All of you that have and continue to contribute to Allie's SNT
Bob for the moral support and all the help getting us through the system
All of Allie's friends that love her and continue to visit, include her in things and help out
Stacey for her continued support and help
June for your words of faith and prayers for Allie
The Dalton's for being the meals go-between
Phyllis for your special love for Allie
Susan for the treats and morning visits
My Anjel Banjel for running errands and being such a good big sis
Adam for help with transfers that make your sister feel safe
My husband who puts up with me and Allie even when we are our most difficult
All of you that have said prayers, wished Allie well, and have kept us in your thoughts
Thank you. We are so lucky and blessed to have you.
Please continue with us to believe in Allie's recovery.
Peace, Love & Happiness,
Deborah
Monday, November 30, 2009
Giving Thanks
Dear Family & Friends,
I hope you all had an awesome holiday. Like most families, Thursday we spent Thanksgiving day eating, drinking, cooking, cleaning, (well actually my sisters and brother did most of the cooking and cleaning!) talking of current events, sharing good memories and hopes for the future. Traditionally, we go to my sister Pam's in Shingle Springs for a couple of days but that would have been impossible for Allie. For instance -- too long of a drive, no access to the house, too many levels in the house for her chair to get around once in there, no proper bed, etc. etc. So this year we invited everyone here and they all happily agreed. Allie had stomach issues for at least a week before the day and I'm pretty sure it was due to stress. Although everyone was fine with the location change she felt bad to be the "cause". She worried about seeing people she hadn't spent much time around and just plain grieved for her inability to participate in a holiday with friends and family as she always had in the past. Her life has changed so much. Nothing for her is as it was. She wants so badly to go be with her friends. To go to work. To go to school.
It was wonderful to have everyone here. The house was full. Part of our extended family, the Dalton's, (less Tricia who just lost her dad and had flown out to be with her mother) came too. For Allie her time with the "crowd" was short as she was up for only a couple of hours before she asked to go back to bed. The noise was too much and she was having some difficulty breathing due to some high pressure and didn't want to scare or make anyone uncomfortable. Bottom line is she hates being trapped in that chair with no voice and no way to take control or modify her place in her immediate environment. People that are not around her much have difficulty understanding her and believe me she knows it, if you try and fake it. It took her a while to settle down but once she did her cousins joined her in her room for a movie which was great.
Allie has been experiencing some severe back pain lately. I've suggested increasing her nerve pain medication but she is resistant. After the time it took to wean her off all the meds she was on at the hospital she is determined not to go back down that road. I am proud of her for that and as always impressed by her determination and strength. However, her level of pain is unacceptable. Paralyzed and in pain? Dang. The good news is she is open to other alternatives so we are checking into options.
Her night time and early morning anxiety attacks reached an all time high over the last couple of weeks. It is agonizing watching her so distraught and feeling so helpless, so unable to help her. There are so many possible reasons for her discomfort or fear and it can be a long process as she tries to narrow it down so that we can help. Try and imagine not even being able to turn your head to assure yourself that the noise you heard was just the wind blowing a tree outside your window. Or maybe you were dreaming of your former life when you could breathe on your own, only to wake up and find that when you tried to take a breath you couldn't. Some discomforts are more obvious and quickly identified, but just as frustrating. Maybe you have hair in your face or the covers are too high, maybe you've gotten too hot or cold and your hands won't move so that you can make the necessary adjustment for comfort. This is Allie's minute by minute hellish reality. On the upside she had a kind of a breakthrough a couple of days ago and we came up with a plan to better deal with the stress brought on by some of these incidents. Wish us luck!
When I gave thought to all I have to give thanks for this year, so many things were obvious. I am thankful for my husband's unconditional love for me, my four beautiful children, that against odds my daughter's life was spared, the incredible support from our loving family, friends, and this wonderfully compassionate and generous community. But, in spite of knowing better, I continue to ask questions that have no immediate answers. I want to be thankful for my daughter's recovery as well as her life. Call me selfish, that's okay. Maybe I am. As I watch Allie struggle with her faith I feel mine, maybe out of necessity, grow stronger. We are in this together, but she is doing by far the hardest work. I know the time will come when she can see how much she has taught us all. I hope I am her best student. I have so much to learn. I wish her job was easier.
Gotta go. It's time to make my daughter's breakfast. Thanks for listening. We love you. Please continue to pray for my daughter's recovery and if you could throw in a bit about her having some relief from her pain, we'd sure appreciate it. Your friendship, support and love is what helps us keep some balance. Maybe today my daughter will find something to smile about.
Thank you Thank you Thank you!
Love, Peace & Happiness
Deborah
ps: a special thank you to Phil for helping Ron get the sink installed in Al's shower
and to Sharon -- the tree is adorable in Allie's room and when I put the decorations on, it put a smile on her face:)
I hope you all had an awesome holiday. Like most families, Thursday we spent Thanksgiving day eating, drinking, cooking, cleaning, (well actually my sisters and brother did most of the cooking and cleaning!) talking of current events, sharing good memories and hopes for the future. Traditionally, we go to my sister Pam's in Shingle Springs for a couple of days but that would have been impossible for Allie. For instance -- too long of a drive, no access to the house, too many levels in the house for her chair to get around once in there, no proper bed, etc. etc. So this year we invited everyone here and they all happily agreed. Allie had stomach issues for at least a week before the day and I'm pretty sure it was due to stress. Although everyone was fine with the location change she felt bad to be the "cause". She worried about seeing people she hadn't spent much time around and just plain grieved for her inability to participate in a holiday with friends and family as she always had in the past. Her life has changed so much. Nothing for her is as it was. She wants so badly to go be with her friends. To go to work. To go to school.
It was wonderful to have everyone here. The house was full. Part of our extended family, the Dalton's, (less Tricia who just lost her dad and had flown out to be with her mother) came too. For Allie her time with the "crowd" was short as she was up for only a couple of hours before she asked to go back to bed. The noise was too much and she was having some difficulty breathing due to some high pressure and didn't want to scare or make anyone uncomfortable. Bottom line is she hates being trapped in that chair with no voice and no way to take control or modify her place in her immediate environment. People that are not around her much have difficulty understanding her and believe me she knows it, if you try and fake it. It took her a while to settle down but once she did her cousins joined her in her room for a movie which was great.
Allie has been experiencing some severe back pain lately. I've suggested increasing her nerve pain medication but she is resistant. After the time it took to wean her off all the meds she was on at the hospital she is determined not to go back down that road. I am proud of her for that and as always impressed by her determination and strength. However, her level of pain is unacceptable. Paralyzed and in pain? Dang. The good news is she is open to other alternatives so we are checking into options.
Her night time and early morning anxiety attacks reached an all time high over the last couple of weeks. It is agonizing watching her so distraught and feeling so helpless, so unable to help her. There are so many possible reasons for her discomfort or fear and it can be a long process as she tries to narrow it down so that we can help. Try and imagine not even being able to turn your head to assure yourself that the noise you heard was just the wind blowing a tree outside your window. Or maybe you were dreaming of your former life when you could breathe on your own, only to wake up and find that when you tried to take a breath you couldn't. Some discomforts are more obvious and quickly identified, but just as frustrating. Maybe you have hair in your face or the covers are too high, maybe you've gotten too hot or cold and your hands won't move so that you can make the necessary adjustment for comfort. This is Allie's minute by minute hellish reality. On the upside she had a kind of a breakthrough a couple of days ago and we came up with a plan to better deal with the stress brought on by some of these incidents. Wish us luck!
When I gave thought to all I have to give thanks for this year, so many things were obvious. I am thankful for my husband's unconditional love for me, my four beautiful children, that against odds my daughter's life was spared, the incredible support from our loving family, friends, and this wonderfully compassionate and generous community. But, in spite of knowing better, I continue to ask questions that have no immediate answers. I want to be thankful for my daughter's recovery as well as her life. Call me selfish, that's okay. Maybe I am. As I watch Allie struggle with her faith I feel mine, maybe out of necessity, grow stronger. We are in this together, but she is doing by far the hardest work. I know the time will come when she can see how much she has taught us all. I hope I am her best student. I have so much to learn. I wish her job was easier.
Gotta go. It's time to make my daughter's breakfast. Thanks for listening. We love you. Please continue to pray for my daughter's recovery and if you could throw in a bit about her having some relief from her pain, we'd sure appreciate it. Your friendship, support and love is what helps us keep some balance. Maybe today my daughter will find something to smile about.
Thank you Thank you Thank you!
Love, Peace & Happiness
Deborah
ps: a special thank you to Phil for helping Ron get the sink installed in Al's shower
and to Sharon -- the tree is adorable in Allie's room and when I put the decorations on, it put a smile on her face:)
Wednesday, November 11, 2009
First Party
Dear Family & Friends,
Life goes on and continues to be full of milestones, tears, bravery, pain, feelings of hopelessness, talk of giving up, smiles and determination. Sometimes all in one day!
Still most days pass much the same as they do for most of us -- quickly and without a lot to remark on. Allie still hates and fears the daily process of transferring her from her bed to her chair and back. We use a sling that we slip under her while we roll her from side to side, and then hoist her up with a hydraulic lift and hopefully place her neatly in her chair so that we don't have to adjust her much once she's in it. Transfers almost always go smoothly and when I ask her why she still worries so much, she reminds me that she broke her neck and is paralyzed. I suppose that says it all.
The transfer still takes two of us mostly because she needs her head and tubes held. Once her muscles in her neck are strong, I'm confident I will be able to move her around by myself. Several of her friends are quite proficient at helping me, Uncle Doug comes on Tuesdays, Auntie Vicky every other Thursday, so even if Ron and Adam are both out, it's a rare day someone is not here to help.
Sadness still greets Allie most mornings when I wake her. The worst though is a night or very early morning when she experiences an anxiety attack which is usually brought on when she feels she cannot breathe. Sometimes it's related to vent or secretion issues, but often it is something I suspect only someone in her situation would understand. Lately, she has had severe drops in her blood pressure when she sits up in bed to eat, which makes for an even tougher way to begin the day as she needs to be lowered and raised several times to get through her meal.
Seven months has passed since Allie's injury. She is very discouraged that she sees/feels no improvement in her condition. Those of us that saw her those first few months beg to differ. Of course she remembers little of that time and only knows that she still can't breathe, still can't move or feel anything other than pain.
Although, I remind her constantly of the improved health and amazing healing that I see, it is not what she is looking for. I remind her and myself how well she is eating, how well surgery scars are vanishing, how bright and clear her eyes are. Those are the signs that give me hope of her amazing potential for recovery.
Still, I am happy to say though, that Allie is getting out more (and me too). We all celebrated the boys (Keenan & Adam's) 18th birthday over sushi and had a great time. We've been out to Don Q's for mexican with Uncle Doug and to Mama Mia's again with Samantha and friends to celebrate her b-day. We've had friends over for bar-b-que and last night Mary and John came over and joined us for Mary's homemade pizza (incredibly yummy). But, recently we had one night that was especialy remarkable. Since Samantha turned 21 a big party was planned to celebrate. The party was at the girls house in Santa Cruz (Michelle, Arezu (sorry sweetie I know I am mispelling your name) & Sam's) and Allie asked me if I thought there was any way she could attend. Samantha is a very special friend and Allie wanted to show her how much she loves her by showing up at her party as a surprise. She knew that Samantha would understand what a big deal this was for Allie.
Ron went to the house to scope it out for ramps, built her two ramps and placed them at the house the day of the party. Thanks Dad! Luckily, for me Kerry dropped by (thanks Kerry) about an hour before Al and I left for the party and we roped her into going with us. When we drove up friends came out and offered their help. Everybody was so happy to see her. This is a pretty big deal since it is the first house, since the accident, that Allie has been in other than ours. Visiting friends is one of the things that Allie misses most. As you might imagine, being in a chair really limits your access to places.
Kerry and I hid out in one of the bedrooms with our glasses of wine while Allie "partied" with her friends. Friends came in to give me hugs and tell me how happy they were when they drove up and saw the ramps, realizing that Allie was either already there or on her way. She had a great time. Someone came in every now and then to let me know she was doing fine and I must confess, I peeked out a few times. It was awesome and I was so relieved to see her smiling and visiting with a house full of friends, some of which she hadn't seen in a long while. I must say it again -- we are blessed with an exceptional group of young people.
Expecting to be there only a couple of hours time flew by and we were shocked to see it was quite late by the time we left. Needless to say Allie and I (out of practice on the late night social scene) were both pretty happy to lay low the next day.
Trips over the hill for Dr's appt.'s are very draining emotionally and physically uncomfortable for Allie. The day after an appointment is one where she experiences an extra amount of neck and back pain. I'm hoping to be able to hook her up with some therapy soon to help strengthen her neck as it does not seem to be improving. Monday she went for a CT scan. Maybe we will hear something new when it has been reviewed.
In the meantime I am thankful for the days that Allie doesn't say "mom I can't do this". I know what my girl is made of. I saw the smile on her face as she did her best to talk with her friends at the party and show them she's still the same Allie inside. I hear her say thank you and smile when someone shows her special consideration when we are dining out. I watch her tough it out through some difficult procedure. I hear her tell me that she's pleased to see that her injury has brought our extended family together.
Allie will turn twenty next month. She will be leaving her teens more dependent than she entered them, with even bigger more profound questions, along with some answers and a view of and understanding of life few 20 year olds ever have. I pray as she learns and conquers, the recovery will come. Until then we cherish visits from friends and family, venturing out, your fantastic meals (and too many great desserts :)).
We love and appreciate you all more than you will ever know. They say it takes a village to raise a child, I say it takes a valley to raise amazing ones.
Love, Peace & Happiness,
Deborah
Life goes on and continues to be full of milestones, tears, bravery, pain, feelings of hopelessness, talk of giving up, smiles and determination. Sometimes all in one day!
Still most days pass much the same as they do for most of us -- quickly and without a lot to remark on. Allie still hates and fears the daily process of transferring her from her bed to her chair and back. We use a sling that we slip under her while we roll her from side to side, and then hoist her up with a hydraulic lift and hopefully place her neatly in her chair so that we don't have to adjust her much once she's in it. Transfers almost always go smoothly and when I ask her why she still worries so much, she reminds me that she broke her neck and is paralyzed. I suppose that says it all.
The transfer still takes two of us mostly because she needs her head and tubes held. Once her muscles in her neck are strong, I'm confident I will be able to move her around by myself. Several of her friends are quite proficient at helping me, Uncle Doug comes on Tuesdays, Auntie Vicky every other Thursday, so even if Ron and Adam are both out, it's a rare day someone is not here to help.
Sadness still greets Allie most mornings when I wake her. The worst though is a night or very early morning when she experiences an anxiety attack which is usually brought on when she feels she cannot breathe. Sometimes it's related to vent or secretion issues, but often it is something I suspect only someone in her situation would understand. Lately, she has had severe drops in her blood pressure when she sits up in bed to eat, which makes for an even tougher way to begin the day as she needs to be lowered and raised several times to get through her meal.
Seven months has passed since Allie's injury. She is very discouraged that she sees/feels no improvement in her condition. Those of us that saw her those first few months beg to differ. Of course she remembers little of that time and only knows that she still can't breathe, still can't move or feel anything other than pain.
Although, I remind her constantly of the improved health and amazing healing that I see, it is not what she is looking for. I remind her and myself how well she is eating, how well surgery scars are vanishing, how bright and clear her eyes are. Those are the signs that give me hope of her amazing potential for recovery.
Still, I am happy to say though, that Allie is getting out more (and me too). We all celebrated the boys (Keenan & Adam's) 18th birthday over sushi and had a great time. We've been out to Don Q's for mexican with Uncle Doug and to Mama Mia's again with Samantha and friends to celebrate her b-day. We've had friends over for bar-b-que and last night Mary and John came over and joined us for Mary's homemade pizza (incredibly yummy). But, recently we had one night that was especialy remarkable. Since Samantha turned 21 a big party was planned to celebrate. The party was at the girls house in Santa Cruz (Michelle, Arezu (sorry sweetie I know I am mispelling your name) & Sam's) and Allie asked me if I thought there was any way she could attend. Samantha is a very special friend and Allie wanted to show her how much she loves her by showing up at her party as a surprise. She knew that Samantha would understand what a big deal this was for Allie.
Ron went to the house to scope it out for ramps, built her two ramps and placed them at the house the day of the party. Thanks Dad! Luckily, for me Kerry dropped by (thanks Kerry) about an hour before Al and I left for the party and we roped her into going with us. When we drove up friends came out and offered their help. Everybody was so happy to see her. This is a pretty big deal since it is the first house, since the accident, that Allie has been in other than ours. Visiting friends is one of the things that Allie misses most. As you might imagine, being in a chair really limits your access to places.
Kerry and I hid out in one of the bedrooms with our glasses of wine while Allie "partied" with her friends. Friends came in to give me hugs and tell me how happy they were when they drove up and saw the ramps, realizing that Allie was either already there or on her way. She had a great time. Someone came in every now and then to let me know she was doing fine and I must confess, I peeked out a few times. It was awesome and I was so relieved to see her smiling and visiting with a house full of friends, some of which she hadn't seen in a long while. I must say it again -- we are blessed with an exceptional group of young people.
Expecting to be there only a couple of hours time flew by and we were shocked to see it was quite late by the time we left. Needless to say Allie and I (out of practice on the late night social scene) were both pretty happy to lay low the next day.
Trips over the hill for Dr's appt.'s are very draining emotionally and physically uncomfortable for Allie. The day after an appointment is one where she experiences an extra amount of neck and back pain. I'm hoping to be able to hook her up with some therapy soon to help strengthen her neck as it does not seem to be improving. Monday she went for a CT scan. Maybe we will hear something new when it has been reviewed.
In the meantime I am thankful for the days that Allie doesn't say "mom I can't do this". I know what my girl is made of. I saw the smile on her face as she did her best to talk with her friends at the party and show them she's still the same Allie inside. I hear her say thank you and smile when someone shows her special consideration when we are dining out. I watch her tough it out through some difficult procedure. I hear her tell me that she's pleased to see that her injury has brought our extended family together.
Allie will turn twenty next month. She will be leaving her teens more dependent than she entered them, with even bigger more profound questions, along with some answers and a view of and understanding of life few 20 year olds ever have. I pray as she learns and conquers, the recovery will come. Until then we cherish visits from friends and family, venturing out, your fantastic meals (and too many great desserts :)).
We love and appreciate you all more than you will ever know. They say it takes a village to raise a child, I say it takes a valley to raise amazing ones.
Love, Peace & Happiness,
Deborah
Monday, October 19, 2009
Lobster, A Storm & Saying Goodbye To A Friend
Dear Family & Friends Far and Near,
The last couple of weeks have been full of new challenges and experiences for Allie. I'll begin with the Lobster Feed which was incredibly fun. It started out a bit rocky when I drove Allie's chair over a makeshift plywood ramp that had been put over the curb into the park area where the event was taking place. Big mistake! I don't know much about ramps (but am learning quickly) but my guess is it was too short which made it too steep and then at the "top" of the curb onto the dirt there was no transition. It just kind of dropped off. Anyway scared the heck out of us both as her chair seemed to be tipping back much too far and to correct I kind of veered to the left which whipped her head a bit and hurt her neck. I made the best show I could of it not being a big deal and that she was never in any danger but my heart was pumping out of my chest. Yet another important lesson was learned. Allie took a quick couple of minutes to calm down and get past the pain and then let it go which was great. Needless to say, we found another way out when it was time to leave.
The food was wonderful and the company was even better...thank you again Kerry & Brianna. This is a very friendly and well run event and we hope we are fortunate enough to go again next year. For Allie it was a bit difficult as it got dark because it becomes impossible for people to read her lips. Since her chair can't get under a table she never gets very close and since she can't move her head, it's difficult for her to feel really part of what is going on even with a small group. For Al this is frustrating and makes her very sad. As many of you know, before the accident, Al was a very outgoing, talkative and physically active girl. Still she enjoyed herself and was really glad she went.
Tuesday of last week was the day Allie was scheduled for a trach change. That morning we woke to the first big storm. Allie woke up afraid to drive over the hill to Kaiser, sad about rain because it reminds her of her accident, (even though she still cannot remember even getting in the car that day) and really worried and nervous of what a power outage would mean to her ventilator working properly. It became clear pretty early that a trip over the hill was too risky. Fortunately, with $$ from the fundraiser (thank you all) we were able to purchase a very good generator. I ran through it again with Allie that when the power went out the internal battery in her ventilator would kick on (it has a short life but it goes on immediately)and in less than a minute the generator would kick on and run the whole house. Worse case scenario we have a back-up ventilator on her chair and two external batteries that are good for several hours. God fobid all else fails...we have the ambu bag. When the power went out the first time Allie opened her eyes with a look of terror. The generator was on in seconds. She slowly relaxed. The second time the power went out the generator went on and Allie smiled at me. Ahhh another hurdle overcome. I'm not dreading winter as much as I thought I would..
This month we said a heartbreaking goodbye to Tyra, one of my oldest and dearest friends. Tyra and I met when we were both very young new parents, raising our first babies, Sirena and Alonzo, born only two weeks apart. Since then we have seen each other through many major life changes -- divorce, births, deaths of parents, new husbands, etc. Actually, Tyra is responsible for my meeting Ron. When she married for the second time to Ron's best childhood friend, Bernie. I was Tyra's maid of honor and Ron Bernie's best man. A few years later, Tyra stood by me as my maid of honor and Bernie next to Ron at our wedding.
Tyra's passing came quickly and at the age of 52 way too soon. As much as I wanted to go see her in those last couple of weeks (they live in Manteca), I didn't feel okay about leaving Allie for that long. And I guess, a part of me was in denial that my friend's end could possibly be so near. We spoke on the phone and I was able to tell her how much I loved her. It's not the same as holding a loved one's hand and telling her in person though.
Allie watched me through these days and apologized again and again that "because of her" I couldn't go see Tyra. Not her fault I told her. Tyra understood. Still it was difficult for me and Allie knew it. It was a teary and tough time for both of us. When Allie heard Ron and I talk about when and where Tyra's service was to be and which of us would go Allie got my attention and said she wanted us both to go and she would go with us. Ron was skeptical. So was I. The service was at 10:30 which meant getting Allie up way earlier than usual and then spending well over two hours in rush traffic. At least an hour or two there and two hours back. Allie said she would make it and was determined to give me an opportunity to say goodbye to my special friend.
Adam came along so we could take turns holding Allie's head over the bumps. The service was held in what Allie said was the most beautiful church she had ever seen. Luckily the reception was held in a room near the church and was wheelchair accessible so we were able to stay and talk with members of the family we hadn't seen in a while, as well as several old friends. Allie looked fabulous and her mood was uplifting. She appeared comfortable and most appeared comfortable with her. She was surprised and touched to find out that Richard, an old friend of Ron's, we hadn't seen in a long while, follows this blog. She was also touched and impressed when Tyra's young grandaughter, Olivia, who had stayed with us a few days this past new years, talked with Allie as if nothing had changed since she had last seen her.
To say though that the day went without a hitch would be a bit of a stretch. Before getting back on the road in the process of helping Allie with some of her care, we reclined her chair back. Unfortunately, when we attempted to put it back up it wouldn't. With no way to fix it, she rode back home in that position. Once home (she's been up for about 9 hours by this time which is a veryyy long time for her)we were concerned about getting her out of the van via the lift since she was fully stretched out. To add to the mess her batteries had run their course and her vent was constantly beeping. Ron did what he could to try and fix the chair, but it was a no-go. We considered carrying her out, but finally gave the lift a go. She fit okay and was soon safely out of the van, rolling and beeping back to her room. The next challenge was getting the sling under her while she was in the chair in this position. Through it all Allie never complained. She had decided that this day was important to me and that no matter what happened, she was going to weather it. Thank you Allie. Once again you demonstrate to me what an amazing young woman you are. We love you so much and promise (me and dad) that we'll get better at this.
Of course the day did take its toll. That night was pretty difficult for Allie. Terrible neck pain and strange dreams made for a restless night.
Some days are full of accomplishments, but on many I still find myself asking how can anyone live this way? Days pass full of sadness, limitations and constant fear that the worst could still happen. And then I answer that we can and will. Until the day that Allie's recovery is such that we no longer have to.
Thanks for listening. Thanks for being there. Thanks for caring. Thanks for your prayers, love, and support in all ways.
Love, Peace & Happiness,
Deborah
The last couple of weeks have been full of new challenges and experiences for Allie. I'll begin with the Lobster Feed which was incredibly fun. It started out a bit rocky when I drove Allie's chair over a makeshift plywood ramp that had been put over the curb into the park area where the event was taking place. Big mistake! I don't know much about ramps (but am learning quickly) but my guess is it was too short which made it too steep and then at the "top" of the curb onto the dirt there was no transition. It just kind of dropped off. Anyway scared the heck out of us both as her chair seemed to be tipping back much too far and to correct I kind of veered to the left which whipped her head a bit and hurt her neck. I made the best show I could of it not being a big deal and that she was never in any danger but my heart was pumping out of my chest. Yet another important lesson was learned. Allie took a quick couple of minutes to calm down and get past the pain and then let it go which was great. Needless to say, we found another way out when it was time to leave.
The food was wonderful and the company was even better...thank you again Kerry & Brianna. This is a very friendly and well run event and we hope we are fortunate enough to go again next year. For Allie it was a bit difficult as it got dark because it becomes impossible for people to read her lips. Since her chair can't get under a table she never gets very close and since she can't move her head, it's difficult for her to feel really part of what is going on even with a small group. For Al this is frustrating and makes her very sad. As many of you know, before the accident, Al was a very outgoing, talkative and physically active girl. Still she enjoyed herself and was really glad she went.
Tuesday of last week was the day Allie was scheduled for a trach change. That morning we woke to the first big storm. Allie woke up afraid to drive over the hill to Kaiser, sad about rain because it reminds her of her accident, (even though she still cannot remember even getting in the car that day) and really worried and nervous of what a power outage would mean to her ventilator working properly. It became clear pretty early that a trip over the hill was too risky. Fortunately, with $$ from the fundraiser (thank you all) we were able to purchase a very good generator. I ran through it again with Allie that when the power went out the internal battery in her ventilator would kick on (it has a short life but it goes on immediately)and in less than a minute the generator would kick on and run the whole house. Worse case scenario we have a back-up ventilator on her chair and two external batteries that are good for several hours. God fobid all else fails...we have the ambu bag. When the power went out the first time Allie opened her eyes with a look of terror. The generator was on in seconds. She slowly relaxed. The second time the power went out the generator went on and Allie smiled at me. Ahhh another hurdle overcome. I'm not dreading winter as much as I thought I would..
This month we said a heartbreaking goodbye to Tyra, one of my oldest and dearest friends. Tyra and I met when we were both very young new parents, raising our first babies, Sirena and Alonzo, born only two weeks apart. Since then we have seen each other through many major life changes -- divorce, births, deaths of parents, new husbands, etc. Actually, Tyra is responsible for my meeting Ron. When she married for the second time to Ron's best childhood friend, Bernie. I was Tyra's maid of honor and Ron Bernie's best man. A few years later, Tyra stood by me as my maid of honor and Bernie next to Ron at our wedding.
Tyra's passing came quickly and at the age of 52 way too soon. As much as I wanted to go see her in those last couple of weeks (they live in Manteca), I didn't feel okay about leaving Allie for that long. And I guess, a part of me was in denial that my friend's end could possibly be so near. We spoke on the phone and I was able to tell her how much I loved her. It's not the same as holding a loved one's hand and telling her in person though.
Allie watched me through these days and apologized again and again that "because of her" I couldn't go see Tyra. Not her fault I told her. Tyra understood. Still it was difficult for me and Allie knew it. It was a teary and tough time for both of us. When Allie heard Ron and I talk about when and where Tyra's service was to be and which of us would go Allie got my attention and said she wanted us both to go and she would go with us. Ron was skeptical. So was I. The service was at 10:30 which meant getting Allie up way earlier than usual and then spending well over two hours in rush traffic. At least an hour or two there and two hours back. Allie said she would make it and was determined to give me an opportunity to say goodbye to my special friend.
Adam came along so we could take turns holding Allie's head over the bumps. The service was held in what Allie said was the most beautiful church she had ever seen. Luckily the reception was held in a room near the church and was wheelchair accessible so we were able to stay and talk with members of the family we hadn't seen in a while, as well as several old friends. Allie looked fabulous and her mood was uplifting. She appeared comfortable and most appeared comfortable with her. She was surprised and touched to find out that Richard, an old friend of Ron's, we hadn't seen in a long while, follows this blog. She was also touched and impressed when Tyra's young grandaughter, Olivia, who had stayed with us a few days this past new years, talked with Allie as if nothing had changed since she had last seen her.
To say though that the day went without a hitch would be a bit of a stretch. Before getting back on the road in the process of helping Allie with some of her care, we reclined her chair back. Unfortunately, when we attempted to put it back up it wouldn't. With no way to fix it, she rode back home in that position. Once home (she's been up for about 9 hours by this time which is a veryyy long time for her)we were concerned about getting her out of the van via the lift since she was fully stretched out. To add to the mess her batteries had run their course and her vent was constantly beeping. Ron did what he could to try and fix the chair, but it was a no-go. We considered carrying her out, but finally gave the lift a go. She fit okay and was soon safely out of the van, rolling and beeping back to her room. The next challenge was getting the sling under her while she was in the chair in this position. Through it all Allie never complained. She had decided that this day was important to me and that no matter what happened, she was going to weather it. Thank you Allie. Once again you demonstrate to me what an amazing young woman you are. We love you so much and promise (me and dad) that we'll get better at this.
Of course the day did take its toll. That night was pretty difficult for Allie. Terrible neck pain and strange dreams made for a restless night.
Some days are full of accomplishments, but on many I still find myself asking how can anyone live this way? Days pass full of sadness, limitations and constant fear that the worst could still happen. And then I answer that we can and will. Until the day that Allie's recovery is such that we no longer have to.
Thanks for listening. Thanks for being there. Thanks for caring. Thanks for your prayers, love, and support in all ways.
Love, Peace & Happiness,
Deborah
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