First Concert, May Flowers, Sunshine & Hope

Dear Family & Friends,

May has always been a favorite month of mine. It marks the beginning of days spent in the sun, my wedding anniversary, mother's day and my birthday. This is the first May since the kids were babies that I will be at home all week during the day. While the circumstances are tragic and most days are still filled with sadness and frustration, something about the season brings renewed hope, or at least the promise of a lot of outside time. It's been tough for Allie being a sun-worshipper like her mom, to struggle with just how much sun is okay and how much is not. She can go in minutes from having the chills to being badly overheated. In spite of the sometimes drastic and scary temp changes she is looking healthier every day and has a beautiful sun-kissed look.

Allie and I have been planting flowers. She directs of course and I pull weeds, dig and plant. The dogs have been especially entertaining lately as they also are enjoying the warm weather and time outside with us. They both can hear Allie's whisper and kiss noises and will come to her when she calls to them. We are venturing out a bit more but Allie is still only up for about six hours and most days are spent at home.

In April Scotty called and asked me if he could take Allie to the Brooks & Dunn concert. Allie was pretty excited at the prospect and I very nervous. A big group of friends was going and she had her heart set on joining them. There was no way I was letting her go without me but, I did hope we could find a way that would allow her some feeling of independence. So began the plans, frustrations, tears, more plans and then change of plans. Going places isn't easy anymore. Nothing is taken for granted anymore. If getting Al in and out of bed is stressful and takes two of us imagine what going to a concert entails. To complicate things further, all her friends had plans to purchase tickets to sit on the lawn. Well, to get to the lawn there are stairs and the lawn is slanted and crowded (not ideal for a wheelchair especially one with a life supporting vent attached). So we attempted to get seats near the accessibility section for a few friends and found out she could have only one attendant! Several attempts were made by me, Kerry and Scotty to get an exception made but, no luck. Scotty and Clinton came over to see if they could carry her up the stairs to the lawn and decided that with four of them it would be an option (I figured I'd have a heart attack for sure but Allie was determined). Well, to make a very long story short it turned out that Auntie Vicky had tickets to the same concert. Auntie Pam and cousin Travis decided to go as well. They planned to arrive early to grab a flat area for us in the front of the lawn. After meeting with the management they were told that there was no way that they would allow Al to be carried up the stairs (although we had been assured on the phone that it is done all the time). The concert was packed and country concerts have a reputation of being rowdy. Allie when she heard the news, (we had just arrived and were in the parking lot) was heartbroken and wanted to go home. Ashley and Samantha talked her into staying. The venue's management with the help of my sister's proding were very nice (especially Kara) and secured us four seats in the accessibility area and would allow Allie's friends to switch off tickets to visit her. She even escorted us through the crowds when we arrived. The concert was awesome and Allie had a blast. Allie had a chance to have several of her friends come and go and our spot was a lot more comfortable and the view a whole lot better than the lawn seats. I was glad it all turned out for the best but it is so disheartening to watch Allie go through the emotional turmoil. Going to a concert when you are twenty should be so easy...you buy your ticket, hop in the car with your friends and go enjoy the music. For my girl nothing is easy anymore.

Overall, Al is doing pretty well physically. No problems with high pressures which is a relief. I think she looks great but she says that coming from me, since I'm her mom, that doesn't mean much. I have to admit that there are times when I am so frustrated with her. I want her to be more optimistic. I want to see more smiles, and have fewer sad times. What it comes down to though is that the frustration I'm feeling is about me. Like all moms I want my baby girl to be happy. Right now in addition to seeing to Al's daily physical needs, as her mom, it's my job to keep her moving forward to try and find that balance between allowing her to grieve her losses and still manage to focus on the positive. I tell her that she is who she is because of her heart and her mind not her body. Easy for me to say. The losses they are so personal and intimate, so constant. They bring feelings of such loneliness and dread. The balance between empathy and "pushing forward" such a tightrope walk for me. Through all this it is actually Allie that is and will set the pace. She always has. She will master things when she is ready. Her fears are justified and will diminish with time. This I know. Her sadness is another story.

We are in the process of getting Al's computer fixed. She is registering for an online English class and has even done a couple of paintings my mouth. She continues to be a source of compassionate and sound advice for friends that share with her life's ups and downs. Her favorite times are those spent with her friends. She also really enjoys spending time with her brothers and sister of course, her cousins, uncle and aunts. It is a welcome break for her when she gets a chance to hang out with someone other than her mom! From my standpoint, in spite of the circumstances, I feel so lucky to have had this time to spend with my daughter. As I've said before I always knew she was special. I just didn't realize how special. I am a better person for having the privilige of watching how she copes, how much she still gives, how she struggles and how hard she tries.

I want to give a huge thank you to Jake and Howard for the Roku box they donated to Allie. She is truly enjoying it. Thank you so much to Keenan and Marquerite for coming to our rescue at the last minute to help transfer Al. If it wasn't for your help she would have had to spend those days in bed. You both did an amazing job and it was a first time for both of you! Allie felt very safe with your help.

Thank you to Randy Smith. He sent Allie a book that we haven't read yet but are looking forward to. I am continuously amazed at how generous and thoughtful people are. We don't know Randy, yet he took the time to write Allie a card and send her a book!

This past few weeks has been especially trying on our family. As many of you already know, Ron had a bad fall working in my soon to be corral area. As a result, he broke his ankle in two places and his arm was so badly broken that after four attempts to set it, he required surgery. Adam has stepped up big time. Helping me with Allie much more than usual, helping his dad when I'm busy with Al, shopping, working around the house and just basically helping to keep our house functioning. Thank you Adam. I am so incredibly proud of you! Thank you to Jim Z., Anjel, my sisters and brother for the extra help since Ron's been down and out (well as much as we can keep him down anyway:).

Thank you to Bianca for your desire and help in exploring the possibilities of getting Allie an FES Bike.

Thank you to all our friends far and near for the love, encouraging comments on the blog, and practical as well as emotional support that you give on a regular basis. It means so much. It keeps us going. Take care.
Thank you. Thank you.

Gotta go.

Love, Peace & Happiness,
Deborah