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:)
Allie
Monday, November 30, 2009
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
Monday, October 5, 2009
Gifts of October
Dear Family & Friends,
First off a giant Thank You to Lacrosse & Football Coach's Curtis and Morris for organizing the fundraiser at Redwood Pizza. I hear the turnout was great.
Maybe it was being too afraid to attend the pizza event, maybe it was the encouraging messages she's been receiving on this blog, and maybe the not so subtle pressure I've been applying but, out of the blue the other day Allie said she wanted to go out to dinner and that she wanted to go to Mama Mia's. Wow. Who would have thought I'd be so excited at the thought of going out to dinner. Allie was actually voluntering to go out in public. To make it even easier I had received some cash (from a very generous anonymous person -THANK YOU-) so we didn't even have to feel guilty for indulging. When we got into town we were happy to see Keenan getting off the bus so he joined Ron, Adam, Allie and I for dinner. I hope Allie noticed that as we made our way to the restaurant every driver we passed had a smile for us, every face in the restaurant had a smile. I saw no stares and heard no comments. We ran into a couple of friends, which was great, and Allie lit up with things to say to all (in her very slight whisper of course). My daughter's incredibly beautiful smile continues to be the best and brightest part of any day, when I am blessed enough to see it. Allie was nervous and tried to put off suctioning as long as possible but the couple times it was necessary, Ron hit the alarm button asap to minimize the noise (goes off when you remove the breathing tube from the trach) and with the suction machine in its case and on the floor, the noise is minimal. The act is unusual but really need not be anymore distracting (maybe less so) than a person coughing or sneezing. All in all the evening was a great success.
This coming weekend is the lobster fest at Henry Cowell and Kerry has generously offered to treat us, if Allie will agree to go (BTW Kerry can't let you treat all of us you already do more than enough!). Brianna is coming from Chico to join us. Wish us luck on this our next outing as Allie learns to find comfort and take control of her world with its new challenges.
This month will be a very busy one for Allie. Tuesday she gets her Gtube removed (stomach feeding tube). I would have liked to have seen it removed before we left the hospital but it is typical to leave it in for a while (often a very long while or sometimes forever) in the event a person is unable to eat for any reason. Its removal marks for me a positive leap of faith. Also, this month she will have a trach change, x-rays of her neck, and an appointment with the neck & spine surgery doc. Unfortunately, we have seen little improvement at this point, in any strength or mobility in her neck muscles. She still requires someone to hold her head during transfers from bed to chair and back. She can't move her head to get comfortable on her pillow and is dependent on us to help her get it where she wants it to be. Also, being up in her chair (in spite of a custom head rest) she still has the "bobble head" thing going which is painful and extremely annoying to her. In spite of all, I have seen a wonderfully positive change in Allie lately. She has found her sense of humor again and will occasionally tease her dad and me and sometimes even make jokes about some of the harsher realities of our situation.
For the first time since the accident, this weekend, I found myself asking "why did this happen to Allie, why my baby girl?" -- please do not misunderstand, I would never wish this on anybody's child --. I was upset seeing her disappointment at a situation that didn't work out as she had hoped/planned (although she did her best to put up a good front). Like all moms, it's always difficult to watch a child in pain over being let down about something. Now when it happens, it is almost unbearable. Regardless, I was immediately ashamed of myself. The question is pointless, having no answer. Energy spent on it a waste of time and emotion. Bad things happen to good people. This I have always known.
Right now, Allie may not be able to breathe on her own, or move her arms and legs but her heart remains generous, sensitive, appreciative, vulnerable, and her brain remarkable. I love my little girl with everything I have (slightly less vulnerable a heart and not nearly as generous, certainly a far less remarkable brain). I love her more than ever no matter her physical limitations. As I am sure, anyone that really knows her would. I remain in awe at her ability to cope. Still, I pray multiple times a day for her recovery. And I ask you all, to please do the same. The ability to move her body didn't make her any more as special a person than she now is, but it allowed her a freedom to participate in the world in the way she longs to.
In the meantime I acknowledge October gifts: Two of my children's birthdays (Anjel & Adam), Allie's new sense of humor and her more frequent smiles, the absence of her feeding tube, and all of you!
And to Sharon -- such a great idea about the porch for Allie and you are so very kind and thoughtful. When you were here, you missed seeing the front of the house where we have a large beautiful covered porch that Allie can enjoy all year long.
Thank you thank you thank you.
Love, Peace & Happiness,
Deborah
On an incredibly sad note we just heard that our friend, Maydene Petty, lost her battle with cancer this week. We mourn her loss and our hearts go out to her two daughters, son and husband. She will be terribly missed. We are so very sorry.
First off a giant Thank You to Lacrosse & Football Coach's Curtis and Morris for organizing the fundraiser at Redwood Pizza. I hear the turnout was great.
Maybe it was being too afraid to attend the pizza event, maybe it was the encouraging messages she's been receiving on this blog, and maybe the not so subtle pressure I've been applying but, out of the blue the other day Allie said she wanted to go out to dinner and that she wanted to go to Mama Mia's. Wow. Who would have thought I'd be so excited at the thought of going out to dinner. Allie was actually voluntering to go out in public. To make it even easier I had received some cash (from a very generous anonymous person -THANK YOU-) so we didn't even have to feel guilty for indulging. When we got into town we were happy to see Keenan getting off the bus so he joined Ron, Adam, Allie and I for dinner. I hope Allie noticed that as we made our way to the restaurant every driver we passed had a smile for us, every face in the restaurant had a smile. I saw no stares and heard no comments. We ran into a couple of friends, which was great, and Allie lit up with things to say to all (in her very slight whisper of course). My daughter's incredibly beautiful smile continues to be the best and brightest part of any day, when I am blessed enough to see it. Allie was nervous and tried to put off suctioning as long as possible but the couple times it was necessary, Ron hit the alarm button asap to minimize the noise (goes off when you remove the breathing tube from the trach) and with the suction machine in its case and on the floor, the noise is minimal. The act is unusual but really need not be anymore distracting (maybe less so) than a person coughing or sneezing. All in all the evening was a great success.
This coming weekend is the lobster fest at Henry Cowell and Kerry has generously offered to treat us, if Allie will agree to go (BTW Kerry can't let you treat all of us you already do more than enough!). Brianna is coming from Chico to join us. Wish us luck on this our next outing as Allie learns to find comfort and take control of her world with its new challenges.
This month will be a very busy one for Allie. Tuesday she gets her Gtube removed (stomach feeding tube). I would have liked to have seen it removed before we left the hospital but it is typical to leave it in for a while (often a very long while or sometimes forever) in the event a person is unable to eat for any reason. Its removal marks for me a positive leap of faith. Also, this month she will have a trach change, x-rays of her neck, and an appointment with the neck & spine surgery doc. Unfortunately, we have seen little improvement at this point, in any strength or mobility in her neck muscles. She still requires someone to hold her head during transfers from bed to chair and back. She can't move her head to get comfortable on her pillow and is dependent on us to help her get it where she wants it to be. Also, being up in her chair (in spite of a custom head rest) she still has the "bobble head" thing going which is painful and extremely annoying to her. In spite of all, I have seen a wonderfully positive change in Allie lately. She has found her sense of humor again and will occasionally tease her dad and me and sometimes even make jokes about some of the harsher realities of our situation.
For the first time since the accident, this weekend, I found myself asking "why did this happen to Allie, why my baby girl?" -- please do not misunderstand, I would never wish this on anybody's child --. I was upset seeing her disappointment at a situation that didn't work out as she had hoped/planned (although she did her best to put up a good front). Like all moms, it's always difficult to watch a child in pain over being let down about something. Now when it happens, it is almost unbearable. Regardless, I was immediately ashamed of myself. The question is pointless, having no answer. Energy spent on it a waste of time and emotion. Bad things happen to good people. This I have always known.
Right now, Allie may not be able to breathe on her own, or move her arms and legs but her heart remains generous, sensitive, appreciative, vulnerable, and her brain remarkable. I love my little girl with everything I have (slightly less vulnerable a heart and not nearly as generous, certainly a far less remarkable brain). I love her more than ever no matter her physical limitations. As I am sure, anyone that really knows her would. I remain in awe at her ability to cope. Still, I pray multiple times a day for her recovery. And I ask you all, to please do the same. The ability to move her body didn't make her any more as special a person than she now is, but it allowed her a freedom to participate in the world in the way she longs to.
In the meantime I acknowledge October gifts: Two of my children's birthdays (Anjel & Adam), Allie's new sense of humor and her more frequent smiles, the absence of her feeding tube, and all of you!
And to Sharon -- such a great idea about the porch for Allie and you are so very kind and thoughtful. When you were here, you missed seeing the front of the house where we have a large beautiful covered porch that Allie can enjoy all year long.
Thank you thank you thank you.
Love, Peace & Happiness,
Deborah
On an incredibly sad note we just heard that our friend, Maydene Petty, lost her battle with cancer this week. We mourn her loss and our hearts go out to her two daughters, son and husband. She will be terribly missed. We are so very sorry.
Friday, September 18, 2009
Are we ready?
Hi Everyone,
2008 was a difficult year for my family (well mostly for Ron and me). I broke my back. Ron lost Jim, a best friend, and his 18 year old cat, Katie. I lost my brother David, my business partnership fell apart when I found out that a person I trusted, was a creep. Still we were thankful for so many things. We lived in a wonderful place. I had a teriffic husband that loved me and four fantastic kids. We had an abundance of good friends and a big loving family. 2009 was around the corner and was going to be a better year...a much better year, I kept telling myself and was pretty confident about it. It started out pretty good. I got a great new job, Ron and I were doing fine, and our kids were all healthy and happy. I guess the reason I am bringing this all up is that I've been thinking a lot lately of how much your perspective, the things you hope for, are thankful for, make you angry, laugh, smile and cry, things you think you can't handle or are looking forward to, are forever changing.
Instead of being a great year, in 2009 Allie sustained through no fault of hers, a life altering injury. Please don't get me wrong, I give thanks everyday that her life was spared. But, the "life" she was spared does not offer a quality of life even close to what she deserves. At 19 most are experiencing their first taste of independence. They are away at college or if at home as was true in Allie's case, are going to a local college, working, making their own schedule, saving (hopefully) and spending their own money, meeting new friends, learning what responsiblity really means, and for the most part coming and going as they choose. At 19, Al is now as helpless as an infant and even more fragile. She is completely dependent on the mother (and Dad of course) she was slowly and successfully working to prove she could be independent of.
However, I do believe that things happen for a reason. I'm not yet sure if it will be that Allie is an inspiration because of the miraculous recovery she has or the successful recovery from a new stem cell treatment. Or maybe her role will be one of teacher or counselor with a knowledge, experience and understanding of life and people most never have. But, as I have believed from the day she was born, Allie is special and is destined to do remarkable things. Right now the challenge is to keep her healthy and safe physically and to offer her opportunities to begin getting out in the world, so she can begin again to be healthy mentally as well. The getting out part is proving to be a bit difficult. Her sadness and fear of people staring, and judging her is overwhelming right now. We did manage to get her out for sushi to celebrate Jordan's birthday (no easy feat). Jordan being the sensitive and awesome friend she is, planned a luncheon for both mothers and daughters (knowing my presence is a given). Although Allie was extremely apprehensive about going, she ended up having a good time and was glad she went. Her one biggest worry about being out in public is the dang vent. She worries that it makes too much noise. She worries about how the tube coming out of her neck looks. She worries that people will be uncomfortable, be bothered by the sound and stare when she needs suctioning. For those of you that don't know about the suctioning, I'll try my best to explain. Allie hasn't the ability to cough or do anything to bring up or clear secretions the way we do. So when secretions gather in her lungs and block her ability to accept or get enough of the air that is being pumped into her by her vent, she needs help removing them. We do this with a small portable pump machine that creates suction. A small thin suction tube/catheter is attached. We remove her breathing tube from her trach and insert the thin tube down into her trach and occlude to create suction pulling the tube out slowly and hopefully the secretions with it. This is uncomfortable for Allie in more ways than one. First off, whenever her breathing tube is removed there is always some anxiety. Then depending on the thickness of the secretions, it can feel pretty lousy. If you go too deep (past the end of her trach) which is necessary sometimes, it can hurt. Personally, I think there is a sense of emotional "invasion" that goes along with the process as well. And again, she is completely dependent on someone being there or coming very quickly when the need for suction arises. This procedure isn't something we see every day. Allie requires suctioning throughout the day and night but it is a sure thing that when she eats, she will need it at least once or twice. Hence her concern about eating out in public as if being in a wheelchair that never fits quite right under a table, having to have someone asssit you with moving, eating and drinking, and not having a voice isn't enough! Allie's current condition makes her a part of our diverse population that many of us have had little or no exposure to. What is unfamiliar to us is likely to be scary. The support we've received tells me that this town really cares and is ready to help her feel comfortable, welcome and accepted. I hope I'm right.
The good news continues to be that Al is doing so much better physically since she's been home. We have had a couple issues and her blood pressure still requires close monitoring as it has a tendency to get pretty low sometimes (50's and 60's). Her sat (oxygen saturation) tends to be at a nice high number though, and her temp has been mostly steady. She did spike a fever the other night but, fortunately it did not last long. She's eating well and sleeping. Sometimes too much sleep as it is a way to postpone the day and thus avoid the realities of her situation. The mornings continue to be heartwrenching.
Thursday our new van was delivered and it is beautiful! Yesterday, Rachel, Allie's roomate when she was at Sonoma State and her boyfriend came for a visit. We all (Allie, Rachel, Cal, Rosalie, Ron and me) loaded up and took a maiden voyage to the wharf to pick up crab sandwiches. Allie chose not to get out of the van but, we were pleased to get her out of the house and up on the new lift for the first time. She was really happy to see Rachel and I was happy to spend some time with Rosalie.
Last night we got a call that Adam was at the Fair goofing around with a friend twisted an ankle and fell. They were on the way to Dominican because he hurt pretty bad. Now Adam is no stranger to broken bones and when I heard the pain in his voice, I knew it was not going to be good news. Ron met them in the emergency and sure enough his leg is badly broken. They got home around 1:30 am. We really should have built a one-story house.
I was up most of the night with Allie suctioning, moving her head, re-positioning her, putting the comforter on and taking it off, helping her drink water, etc. She was cranky (understatement). I lost my patience. She deserves someone that has never-ending patience and compassion. Instead she has me. Maybe, there are lessons for both of us here that will make us better people. Allie will benefit from learning more tolerance of hers and others shortcomings. I need a lot more patience and pray for it everyday. We are both stubborn. Sometimes that can be a good thing sometimes it is a stumbling block.
Things and people I am especially grateful for today:
Kathi, and the time she gives every morning so that Allie has range of motion
The amazing meals you are all providing us with (I think there may be a rally for allie cookbook in the future)
The Daltons for delivering the meals to us
Kerry, her love and emotional support for Allie, new friendship to me, and awesome brownies
Ray and his friend Todd for the beautiful planter box and flowers outside of Allie's bedroom window and Linda for the gorgeous crystal
Sharon for the yummy lemon soap, rainbow maker and other gifts for Allie (not to mention the remarkable meals)
My brother Douglas and sisters visits
Mine and Allie's friends that don't find our situation too akward or sad to keep them from visiting
Allie's bravery going out to lunch at Rumblefish (and the amazing group of women that we shared the time with), her getting up the lift and going for a ride in the new van, and occasional smile from her (for friends not me or Dad of course :))
Your continued support in the way of donations, prayers, meals, visits and love sent via comments on this blog
People I can talk to that really understand like Teena, Cheri & Katie
My awesome husband
My kids
An occasional rest sitting out in the sun
Any time spent with my horse
A renewed faith in the overall good of people
Please pray for Allie's recovery. More than anything she just wants to be happy again. Thank you, we love you.
Love, Peace & Happiness,
Deborah
2008 was a difficult year for my family (well mostly for Ron and me). I broke my back. Ron lost Jim, a best friend, and his 18 year old cat, Katie. I lost my brother David, my business partnership fell apart when I found out that a person I trusted, was a creep. Still we were thankful for so many things. We lived in a wonderful place. I had a teriffic husband that loved me and four fantastic kids. We had an abundance of good friends and a big loving family. 2009 was around the corner and was going to be a better year...a much better year, I kept telling myself and was pretty confident about it. It started out pretty good. I got a great new job, Ron and I were doing fine, and our kids were all healthy and happy. I guess the reason I am bringing this all up is that I've been thinking a lot lately of how much your perspective, the things you hope for, are thankful for, make you angry, laugh, smile and cry, things you think you can't handle or are looking forward to, are forever changing.
Instead of being a great year, in 2009 Allie sustained through no fault of hers, a life altering injury. Please don't get me wrong, I give thanks everyday that her life was spared. But, the "life" she was spared does not offer a quality of life even close to what she deserves. At 19 most are experiencing their first taste of independence. They are away at college or if at home as was true in Allie's case, are going to a local college, working, making their own schedule, saving (hopefully) and spending their own money, meeting new friends, learning what responsiblity really means, and for the most part coming and going as they choose. At 19, Al is now as helpless as an infant and even more fragile. She is completely dependent on the mother (and Dad of course) she was slowly and successfully working to prove she could be independent of.
However, I do believe that things happen for a reason. I'm not yet sure if it will be that Allie is an inspiration because of the miraculous recovery she has or the successful recovery from a new stem cell treatment. Or maybe her role will be one of teacher or counselor with a knowledge, experience and understanding of life and people most never have. But, as I have believed from the day she was born, Allie is special and is destined to do remarkable things. Right now the challenge is to keep her healthy and safe physically and to offer her opportunities to begin getting out in the world, so she can begin again to be healthy mentally as well. The getting out part is proving to be a bit difficult. Her sadness and fear of people staring, and judging her is overwhelming right now. We did manage to get her out for sushi to celebrate Jordan's birthday (no easy feat). Jordan being the sensitive and awesome friend she is, planned a luncheon for both mothers and daughters (knowing my presence is a given). Although Allie was extremely apprehensive about going, she ended up having a good time and was glad she went. Her one biggest worry about being out in public is the dang vent. She worries that it makes too much noise. She worries about how the tube coming out of her neck looks. She worries that people will be uncomfortable, be bothered by the sound and stare when she needs suctioning. For those of you that don't know about the suctioning, I'll try my best to explain. Allie hasn't the ability to cough or do anything to bring up or clear secretions the way we do. So when secretions gather in her lungs and block her ability to accept or get enough of the air that is being pumped into her by her vent, she needs help removing them. We do this with a small portable pump machine that creates suction. A small thin suction tube/catheter is attached. We remove her breathing tube from her trach and insert the thin tube down into her trach and occlude to create suction pulling the tube out slowly and hopefully the secretions with it. This is uncomfortable for Allie in more ways than one. First off, whenever her breathing tube is removed there is always some anxiety. Then depending on the thickness of the secretions, it can feel pretty lousy. If you go too deep (past the end of her trach) which is necessary sometimes, it can hurt. Personally, I think there is a sense of emotional "invasion" that goes along with the process as well. And again, she is completely dependent on someone being there or coming very quickly when the need for suction arises. This procedure isn't something we see every day. Allie requires suctioning throughout the day and night but it is a sure thing that when she eats, she will need it at least once or twice. Hence her concern about eating out in public as if being in a wheelchair that never fits quite right under a table, having to have someone asssit you with moving, eating and drinking, and not having a voice isn't enough! Allie's current condition makes her a part of our diverse population that many of us have had little or no exposure to. What is unfamiliar to us is likely to be scary. The support we've received tells me that this town really cares and is ready to help her feel comfortable, welcome and accepted. I hope I'm right.
The good news continues to be that Al is doing so much better physically since she's been home. We have had a couple issues and her blood pressure still requires close monitoring as it has a tendency to get pretty low sometimes (50's and 60's). Her sat (oxygen saturation) tends to be at a nice high number though, and her temp has been mostly steady. She did spike a fever the other night but, fortunately it did not last long. She's eating well and sleeping. Sometimes too much sleep as it is a way to postpone the day and thus avoid the realities of her situation. The mornings continue to be heartwrenching.
Thursday our new van was delivered and it is beautiful! Yesterday, Rachel, Allie's roomate when she was at Sonoma State and her boyfriend came for a visit. We all (Allie, Rachel, Cal, Rosalie, Ron and me) loaded up and took a maiden voyage to the wharf to pick up crab sandwiches. Allie chose not to get out of the van but, we were pleased to get her out of the house and up on the new lift for the first time. She was really happy to see Rachel and I was happy to spend some time with Rosalie.
Last night we got a call that Adam was at the Fair goofing around with a friend twisted an ankle and fell. They were on the way to Dominican because he hurt pretty bad. Now Adam is no stranger to broken bones and when I heard the pain in his voice, I knew it was not going to be good news. Ron met them in the emergency and sure enough his leg is badly broken. They got home around 1:30 am. We really should have built a one-story house.
I was up most of the night with Allie suctioning, moving her head, re-positioning her, putting the comforter on and taking it off, helping her drink water, etc. She was cranky (understatement). I lost my patience. She deserves someone that has never-ending patience and compassion. Instead she has me. Maybe, there are lessons for both of us here that will make us better people. Allie will benefit from learning more tolerance of hers and others shortcomings. I need a lot more patience and pray for it everyday. We are both stubborn. Sometimes that can be a good thing sometimes it is a stumbling block.
Things and people I am especially grateful for today:
Kathi, and the time she gives every morning so that Allie has range of motion
The amazing meals you are all providing us with (I think there may be a rally for allie cookbook in the future)
The Daltons for delivering the meals to us
Kerry, her love and emotional support for Allie, new friendship to me, and awesome brownies
Ray and his friend Todd for the beautiful planter box and flowers outside of Allie's bedroom window and Linda for the gorgeous crystal
Sharon for the yummy lemon soap, rainbow maker and other gifts for Allie (not to mention the remarkable meals)
My brother Douglas and sisters visits
Mine and Allie's friends that don't find our situation too akward or sad to keep them from visiting
Allie's bravery going out to lunch at Rumblefish (and the amazing group of women that we shared the time with), her getting up the lift and going for a ride in the new van, and occasional smile from her (for friends not me or Dad of course :))
Your continued support in the way of donations, prayers, meals, visits and love sent via comments on this blog
People I can talk to that really understand like Teena, Cheri & Katie
My awesome husband
My kids
An occasional rest sitting out in the sun
Any time spent with my horse
A renewed faith in the overall good of people
Please pray for Allie's recovery. More than anything she just wants to be happy again. Thank you, we love you.
Love, Peace & Happiness,
Deborah
Thursday, August 27, 2009
Is there truly any subsitute for a hug?
Dear Family & Friends,
First I must apologize for taking so long to get caught up...our internet has been down. Thanks to my sister, Victoria who came to visit today, it is up and running again. Who knew she was so savvy at these things!!
So, should I start out by talking about how well Allie is doing medically (for the most part)? She looks great. She's eating two to three meals a day and with the exception of one very frightening episode a few days ago, has been relatively stable with regard to her blood pressure. During a transfer from bed to chair Ron, Adam and I watched her face go pale and for a very brief but scary time she took on that blank stare which I know all to well is her passing out. Thank God it was brief and after "bagging" her for some extra big breaths and getting her back to bed for a few minutes we were able to help her into her chair for an incident free afternoon.
Friends continue to come by and spend time with her which is all she lives for right now. How blessed we are to have such wonderful people surrounding us. Other than a couple doctor's appts. and one fun trip to the pre-school Allie has not left the house. Hopefully, we will venture out soon to have dinner or see a movie. We still have the rental van which is a terrible financial drain but Allie would feel even more isolated and unsafe without it. We've purchased a van and hope to have it here the first week of September.
Maybe I should only talk about the good stuff but that would be very dishonest and misleading. Maybe that is what people want to hear, I'm not sure but you've all been way to loving and supportive, I think for that.
The truth is that Allie's sadness, feelings of loss and grief is so deep that there are times I fear I will start crying and never stop. By the time we are my age, we've all experienced loss of someone we love. This is so very different. When you lose someone you love you never forget them or the pain you feel when they first go away. Time however does ease that pain. I worry that this pain will not ever go away. Every morning Allie wakes up to a body that will not move no matter how hard she tries to make it. She cries. We talk about the future. I try and assure her that it will get better. It will not always be like this. Her path is a different one she envisioned before the accident but doesn't necessarily have to be a bad one.
Yesterday, Allie cried for the burden she thinks she has created for the family. She worries we will lose our house. She worries her friends will forget her and stop coming around. She worries I will become too old to care for her. She worries she will not recover. She worries that her friends are upset by her loss and that she cannot even give them a hug to make them feel better. Today she had to say goodbye to Haley who is off to college in San Diego. This is a most difficult time as friends return to school.
She wants to be able to comfort, say goodbye and hello to her friends with a hug her body will not enable her to give. She knows the power of a hug. My daughter is worried she can't comfort others! I try and tell her that a hug can be given with words and the look in a persons eyes. I might be lying to her. I'm not sure there is a subsitute for a hug. I lay down with her, wrap my arms around her and get as close as I can. Cheek to cheek I promise her it will get better. It will. She will have miraculous recovery. We will settle for nothing less.
Thank you for your prayers, unbelievable financial donations, incredible meals and friendships.
Prayers to Jerry, Ian and Connor for continued recovery.
We love you all.
Love, Peace & Happiness,
Deborah
First I must apologize for taking so long to get caught up...our internet has been down. Thanks to my sister, Victoria who came to visit today, it is up and running again. Who knew she was so savvy at these things!!
So, should I start out by talking about how well Allie is doing medically (for the most part)? She looks great. She's eating two to three meals a day and with the exception of one very frightening episode a few days ago, has been relatively stable with regard to her blood pressure. During a transfer from bed to chair Ron, Adam and I watched her face go pale and for a very brief but scary time she took on that blank stare which I know all to well is her passing out. Thank God it was brief and after "bagging" her for some extra big breaths and getting her back to bed for a few minutes we were able to help her into her chair for an incident free afternoon.
Friends continue to come by and spend time with her which is all she lives for right now. How blessed we are to have such wonderful people surrounding us. Other than a couple doctor's appts. and one fun trip to the pre-school Allie has not left the house. Hopefully, we will venture out soon to have dinner or see a movie. We still have the rental van which is a terrible financial drain but Allie would feel even more isolated and unsafe without it. We've purchased a van and hope to have it here the first week of September.
Maybe I should only talk about the good stuff but that would be very dishonest and misleading. Maybe that is what people want to hear, I'm not sure but you've all been way to loving and supportive, I think for that.
The truth is that Allie's sadness, feelings of loss and grief is so deep that there are times I fear I will start crying and never stop. By the time we are my age, we've all experienced loss of someone we love. This is so very different. When you lose someone you love you never forget them or the pain you feel when they first go away. Time however does ease that pain. I worry that this pain will not ever go away. Every morning Allie wakes up to a body that will not move no matter how hard she tries to make it. She cries. We talk about the future. I try and assure her that it will get better. It will not always be like this. Her path is a different one she envisioned before the accident but doesn't necessarily have to be a bad one.
Yesterday, Allie cried for the burden she thinks she has created for the family. She worries we will lose our house. She worries her friends will forget her and stop coming around. She worries I will become too old to care for her. She worries she will not recover. She worries that her friends are upset by her loss and that she cannot even give them a hug to make them feel better. Today she had to say goodbye to Haley who is off to college in San Diego. This is a most difficult time as friends return to school.
She wants to be able to comfort, say goodbye and hello to her friends with a hug her body will not enable her to give. She knows the power of a hug. My daughter is worried she can't comfort others! I try and tell her that a hug can be given with words and the look in a persons eyes. I might be lying to her. I'm not sure there is a subsitute for a hug. I lay down with her, wrap my arms around her and get as close as I can. Cheek to cheek I promise her it will get better. It will. She will have miraculous recovery. We will settle for nothing less.
Thank you for your prayers, unbelievable financial donations, incredible meals and friendships.
Prayers to Jerry, Ian and Connor for continued recovery.
We love you all.
Love, Peace & Happiness,
Deborah
Monday, August 10, 2009
Home Sweet Home
Hi Everyone,
On August 6, one day shy of a four month stay at SC Valley Medical, Allie came home at last.
Friends and family came to help pack up the stuff we had gathered over the months. Ron, Jordan, Samantha, Allie and me loaded up in the rental van and headed for home. The girls helped keep Allie's head steady over the bumps and it was mostly a good ride for her.
As we came down our driveway, the scene was one that would bring tears to anyone's eyes. It certainly did ours. Friends of Allie lined the driveway and yard with welcoming signs and the yard was full of balloons. Nervous, and a bit overwhelmed she smiled as we drove her chair onto the van lift and lowered her onto the ground (leaving the hospital we had help so this was our first time alone and I'm sure Allie was pretty nervous). But she was thrilled to see her friends and was touched beyond words. The house was full of great food and the visit was short but very sweet.
Allie was thrilled with her room and was happy to sleep in her new bed. The first night the girls had a sleep over and although they were up late once to sleep Allie mostly slept through the night. Amazing! There truly is no place like home.
As for me, walking into my home was a somewhat surreal experience. Quickly starting to feel right again and am so very grateful to be here!
I have a lot more to talk about. The last few days have been mostly good. It will have to wait. Gotta go.
We love you all so much and I am thankful everyday for the support of our family, friends and community. This journey is not one I pretend to have a handle on. It is not one that any of us would choose. It is one of the last I would have chosen for my daughter. We will try our best to take it one day at a time. I know we could not have gotten this far without all of you. Thank you.
Love, Peace & Happiness,
Deborah
On August 6, one day shy of a four month stay at SC Valley Medical, Allie came home at last.
Friends and family came to help pack up the stuff we had gathered over the months. Ron, Jordan, Samantha, Allie and me loaded up in the rental van and headed for home. The girls helped keep Allie's head steady over the bumps and it was mostly a good ride for her.
As we came down our driveway, the scene was one that would bring tears to anyone's eyes. It certainly did ours. Friends of Allie lined the driveway and yard with welcoming signs and the yard was full of balloons. Nervous, and a bit overwhelmed she smiled as we drove her chair onto the van lift and lowered her onto the ground (leaving the hospital we had help so this was our first time alone and I'm sure Allie was pretty nervous). But she was thrilled to see her friends and was touched beyond words. The house was full of great food and the visit was short but very sweet.
Allie was thrilled with her room and was happy to sleep in her new bed. The first night the girls had a sleep over and although they were up late once to sleep Allie mostly slept through the night. Amazing! There truly is no place like home.
As for me, walking into my home was a somewhat surreal experience. Quickly starting to feel right again and am so very grateful to be here!
I have a lot more to talk about. The last few days have been mostly good. It will have to wait. Gotta go.
We love you all so much and I am thankful everyday for the support of our family, friends and community. This journey is not one I pretend to have a handle on. It is not one that any of us would choose. It is one of the last I would have chosen for my daughter. We will try our best to take it one day at a time. I know we could not have gotten this far without all of you. Thank you.
Love, Peace & Happiness,
Deborah
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