This has been quite a gap after the almost daily updates about James. Our tracker shows that there a lot of people that are still checking in on how we are doing. We greatly appreciate that.
We are now half-way through a "normal" week and it has been good to move forward but also very tough at times. The hardest part is that we are both away from each other for a much longer period than we are used to. Dad is back to work full time and mom is holding down the home front, which was a bit behind to start the week.
Today has been one of our worst days and we are looking forward to the weekend. It's hard to remember exactly how we dealt with it after Tony but it's good that we don't remember those things. We do know it gets better with time. Another reason today was tough was some bitter sweet news we were alerted to yesterday.
There was a couple with four children and two had a severe form of EB. Last fall they lobbied and were allowed to try a potential break through bone marrow transplant on the youngest brother using stem cells from one of the healthy older brothers. They just released news yesterday that it seems to be working and may be a cure for EB.
Obviously we are overjoyed for them and all EB families as we know how hard you hope that your child would be cured. This is providing huge hope for them all and shows promise. Besides revisiting the facts of EB, we were reminded that it's too late for our two sons and it would also be a longshot for any future children. We will be going into more detail on that and provide a link to the stories in a future post. Consider that our cliffhanger for this episode.
We both decided to set aggressive goals for losing weight in the next 4 weeks. It's something we wanted to do and decided it may be good to keep us active. Yes some of the blame is from all the wonderful food we were provided for the last month and we would eat it all again if we had the chance! So far it's tough getting up in the morning to exercise, but Abby assures us she would help with that regardless.
She has been good at night until last night and may have some teeth on the move again. It's fun to watch her smile and laugh with her new chompers. She has a new chuckle she likes to show off. Abby still says hi and bye to everyone she sees, usually more that once.
Another goal we have is to get started on a memorial flower garden in our yard. We were sad to leave Tony's in SF and learned that it was very helpful for the grieving process.
Again, we are amazed and overwhelmed by the condolences and comfort we are receiving from all. We can't thank you all enough for everything you have provided and continue to provide for us and our family. We truly feel loved and taken care of.
One of our biggest challenges is to continue to rely on God's strength to get us through. It's easy for us to think we can handle things on our own, especially when things go well in life. We must remember daily to surrender to the one in control and that is when we truly find peace.
Still drained, now with sore muscles,
Stu, Tashia and Miss Social