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