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