I also remember being extremely pregnant, so this was not long before Lu made her appearance, and Chad and I were driving home from shopping and eating somewhere. I pointed out how in a very short time the baby would be here and we would have all kinds of extra stuff to lug around with us. He was just kind of like it was no big deal, babies don't need much...little did we know just how much "stuff" this little lady would eventually need to go anywhere. And as she gets older, it seems like she just keeps needing more, instead of less. But I am thankful that the things she needs exist at all because they are instrumental in improving her health and quality of life.
The second half of this year has been especially hard (on my heart) since Lucy started having seizures. They are pretty well controlled with Depakote, and even when she does have a "big" one it is very small compared to how severe they could be. They last usually no more than a minute and are assumed to be causing no damage to her brain. However, when she started having them, I let a fear in that I had pretty much ignored up until that point. A fact that I had tried to not let control me is that a small percentage of children with Rett that die suddenly. Rettsyndrome.org states:
"The factors most strongly associated with an increased risk of sudden unexplained death in RTT are uncontrolled seizures, swallowing difficulties and lack of mobility. Physical, occupational therapy, nutritional status or living arrangements made no difference in the incidence of sudden unexplained death. Other deaths have resulted from pneumonia."
And even though her seizures are controlled, I just began worrying anyway because Lucy also has difficulty swallowing and limited mobility. Both of these things are struggles we deal with constantly. I would by no means say the fear consumes me on a regular basis, but it definitely crosses my mind daily. And then sometimes it does take over and I am incapacitated by it for a very brief time, like an hour or two, and then I pull myself back together. But this is what seizures have brought to me. And so this year as we celebrated Lucy's birthday with a big party on Saturday and today with other special surprises and treats, I can't help but feel that every ounce of me celebrates especially that she has lived another year. Really, not a one of us is promised tomorrow and I realize that. I may not wake up in the morning. However, when a person also has a life-threatening condition, this just compounds the fear of what tomorrow may bring.
Lucy and I have been gardening for some time now, usually in containers. And she asks to garden all the time, so for her birthday I had a vision of a raised garden bed that she could wheel up to in her wheelchair and have her very own garden. Chad and his dad built what I had in mind and we prepared it to be ready to show Lu on the day of her party. Lucy and I have been growing Brussels sprouts and two kinds of heirloom tomatoes from seed for a few months now and she finally got to plant them in her own garden!
She was so happy! We put her tomatoes in big pots on the ground and then we took a trip to the greenhouse yesterday to buy some flowers for her garden also. Her birthday party was also loosely garden "themed":
All of the kids got to plant a marigold and take it with them. Here is a picture of the party girl:
And here she is surrounded by some of her best buds:
And finally being sung to:
It was wonderful to have so many people come to celebrate Lucy with us! We are always grateful that we have so many friends and family that care for us and love us. Before the party Lu and I made some homemade seed paper to give to her guests as a thank you for coming and then I asked her if she could tell me a message she wanted to give to her guests. I specifically did not say to thank them, to see what she would say and here is the finished product of Lucy's message and seed paper gift:
Chad and I are so proud that she not only could create a message, but that she said thank you on her own with no prompting from me. We talk a lot about good manners and I am glad it's sinking in!
And since today is Lucy's actual birthday I asked her what she might want special for supper and this is what she said:
So that is what we will have of course!
Even though I worry, and each day has its own struggles, I am always grateful for every day we have together. I am grateful that Chad can support us so I can stay home and always be with Lu. I can't believe that five years have passed already. Each day Lucy continues to grow and amaze us with her persistence and grace at tackling this life that is hers for better or for worse.
Happy birthday big girl!
