Pain, Despair, the Mall & Good Friends

Hi Everyone,

This morning I came out to the kitchen looked out the window at the beautiful sun shining and felt so good. The good feeling lasted about five seconds and then the sadness fell around me like fog. My girl is still unable to move, breathe on her own and is sad every day. So this is how Allie feels in the morning. See my nights are so interrupted with suctioning and all of Allie's other care that I don't think I've ever really had time to have that false sense of "all's well with the world this morning". I was up last night as much as ever. Still...I don't know if it was that I slept in later than usual, the incredible sun, the time change, the fact that we spent a lot of time outside yesterday or just that time is a healer even in the worst of situations. For those five seconds life was great. I do remember how it feels and am going to do my best to hold on to that and practice stretching out those five seconds!!

Allie's pain continues to haunt her more days than not. She has some stronger meds now and has chosen to take them a few times although she remains very conservative with their use as she worries about addiction. She has had some shortness of breath when she's up, which is a new problem, but if I temporarily increase the volume on her ventilator she seems to be fine.

The last couple of weeks Allie has shown some incredible progress in her desire to try new things. She has decided to try and do some painting. Auntie Vicky helped us as we shopped at Beverly's for some supplies. John F. has given Allie an easle and dad is working on a way to adapt it so that Allie can reach it. I can't wait to see her creations. She has always been artistic and she certainly has a lot to express.

Last week Allie surprised me again by saying she wanted to go to the mall to buy a gift for Brianna, who just had her 21st birthday. Now anyone that knows Allie, knows she is no stranger to the mall! But since her accident she has refused to go. She's very uncomfortable with the way she looks and hates it when people stare. So with Jordan along to help (thanks Jordan) we headed out. Jordan, by the way, has become quite competent at transfers and has even suctioned. So we went to the bank in town where Allie had business to take care of and did so with the help of Carmen (thanks Carmen). And then we drove to the Capitola Mall. It was wonderful to see Allie taking the time to not only shop for Brianna but a few things for herself too. We had dinner at Chili's and headed home. It was a great day. All three of us had a lot of fun. This trip was yet another milestone for Allie. Sure some people stare but not everyone. Most people are sensitive and do what they can to ease her discomfort. She still has just a whisper but is increasingly more comfortable with communicating with people and most seem to have no problem understanding her. I watch her take control more and more. Ordering food in a restaurant or talking with a banker a few months ago was so much harder for her than it is now.

Friday night Allie had a little surprise party for Brianna. Allie chose decorations and directed us as to where they should go. It was a small gathering of a few friends but a very good time was had by all. The thing about fun times is that with many ups there are the downs. That night Allie and I talked until about four in the am. Her despair so great. She asks me such difficult questions that I am grateful it is dark, so she can't see the tears streaming down my face. She wants the same things we all want. She's not asking for anything unreasonable. She doesn't want riches. She doesn't want to be famous. She doesn't want to be powerful. She wants to go be with her friends. She wants to work and go to school. She wants someone to love and love her. She wants to be a wife and mom someday. She wants to walk and breathe on her own. When mom do you think they will come up with a treatment for me? How will we be able to pay for it? Do you really believe it is going to happen? I don't want to live like this for too much longer mom. It won't be worth it if it goes on too long. Allie's determination and then feelings of hopelessness are so strong. Her arguments so compelling. Her insights so profound. The things she talks about, her outlook, frustration and emotional pain and logic astounds me. I am challenged by her in one way or another every day. We are not a family that gives up. We will not give up and even on the most difficult of days we must find faith and if she can't, it is our job to help her. Lucky for us we have all of you to help.

The last few days we've been getting out and soaking up a bit of the afternoon sun. It sure helps to get outside. We continue to have visits, good wishes, great meals, letters and support from friends and family. We are so incredibly blessed to have such a strong support group. Allie and I use to argue about which of us had a bigger and better group of friends. It seems that now the groups have merged and we can now together enjoy these amazing people.

I am so excited about spring and summer. I am hoping that Al's neck will be strong enough soon so that we can get out for some more adventures. It is still unclear when and where Allie will be going for her rehab but we should be hearing something soon.

Time is so much more powerful than I ever realized. A year to someone fifty so much shorter than to someone twenty. A day so much more precious to someone that is having their last day, than to someone that is suffering and tolerating their way through the day.

Thank you for all your prayers, love & support. We could not do this without you, please know that.

Love, Peace & Happiness,
Deborah