Confident
A few days out from our decision and we still feel extremely confident. This does not mean that I won't spend time wondering "what if"...I think that I will always wonder how things could be different had we chosen to go forward with the transplant.
There are many more big decisions ahead of us, waiting for an answer. We need to decide where we want to settle. We want to move some place for the long term - a place to really call home. In 10 years of marriage we have never done that!!
I am anxious to get back to the US. We have a ton of doctor appointments and we need to prepare a "safe room" for Waverly. (A "safe room" is just a bedroom with no furniture, just soft toys and a bed. We will have to install a dutch door and a video monitoring system. This allows us to put her some place safe to play and sleep. She is getting strong and will start hurting herself if we don't create a safe place for her.)
Unfortunately, Wavey seems to be changing daily. I am not sure if it is our interpretation of things now that we have a diagnosis or if she really is beginning the rapid regression. It is so incredibly difficult to watch. In a way, I feel like I am losing my beautiful little girl to this horrible disease. But then I get a smile or a look, and I know that she is still there.
I wonder if it scares her or if it hurts. I certainly pray that is not so.
Comments
I'm an old TU classmate of your's, who has been following your blog for a bit. I am SO SORRY to hear about the struggles you are going through. I will be praying for clarity, strength and comfort as you move ahead with your plans and changes in life. And I pray that Waverly and Oliver do not experience any pain or hurt through this...they are truly beautiful children!
Sarah (Nederveld) Giere
Continuing to pray for you guys as you make such difficult decisions. You are such a beautiful family....
Sending much love,
Deanna (Burch) Greene
If you move back to the US, MRDD may be able to help you with funding or contacts or anything else you may need when you making Waverly's safe room etc.
I am so thankful that you were able to make some decisions that you feel comfortable with. I continue to pray for you all and all that lies ahead. It sounds like there are still so many choices in the immediate future. I love you all!
It would be nice for you to have a "home" to call your own and have all the comforts needed for the children's sake. May you seek God's guidance as you look ahead to your future decisions. Hope to see you Stateside soon!
Love,
Spence and family
Sending love from Okinawa, Japan
Jessica (DeKorne) Korsmo
im from texarkana texas. somehow..dont know how...i ran across this blog. ive been reading it and looking at it everyday for a while now.
i want you to know i am praying for your family and i think about yall a lot. even though i have no connection to you and im far away, you have affected my life and i am so sorry for your situation. maybe by my comment you can be comforted by seeing how many people (close and randomly) will be affected by this and are now aware of the syndrome. i am one of the random ones, but nevertheless, im affected.
with love,
ali blagg
I know you two have made the best decision for your children. Know that we love and support you. We continue to keep you in our hearts.
We'd love to do Ivanhoes with you guys again!
Tim and I check in on you guys through your blog all the time. We are amazed at the honesty and faith with which you guys are meeting each day. We're thinking of you, praying for you, wishing you wisdom in your decisions, support from your community, and strength for the journey.
Lindsay (and Tim).