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:)