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.