Structure
We are beginning to settle into a schedule and it is wonderful. We all work better when we have structure and can anticipate what is coming next. Waverly rode the bus to and from school today. I think she enjoys it. She loves being in a car and the other kids entertain her. Oliver and I are able to run errands, go to the park, or have some therapy play together without distraction. It is nice to have that one-on-one time with him.
I had a consult meeting with our pediatrician tonight. She is wonderful!! We were able to sit together and go over the past 16 months. She is now up to date and willing to do what ever she needs to do in order to help us through this. I feel so fortunate to have wonderful medical care and people invested in taking care of my kids. This is why we returned to the US and tonight validated that decision for us once again.
It seems that every time one area of my life feels secure other areas become more chaotic. That is proving to be the case once again. The past week has been incredible difficult for me, personally.
I have been so encouraged by those of you who read this blog. It has become therapy for me to sit down and write to all of you. Thank you for being so interested in Waverly & Oliver. I wish that I could return to our anonymous way of life, with 2 happy & healthy kids. But since this is the path our lives have taken, I am glad that so many of you have fallen in love with my beautiful children. I think their impact in your lives helps to soften the blow of this terrible disease.
Comments
Carolyn Jones
i am also a stranger but feel uniquely gripped by your story. i will continue to pray for you daily.
I can't begin to understand the weight of your situation - knowing that unless a cure comes soon, you will have to say an early and tragic goodbye to your lovely babies. My heart just aches so much about it. Your strength and grace and loveliness are miracles.
I will continue to pray for a cure, and for your peace. I'm so sorry it has been tough this week.
That doctor is a godsend!
ali in texarkana, tx