|1st Day of Preschool|
|Top of Mt Spokane|
A couple of times I've cried in front of Ruby about what's happening with Noa. She'll ask what's wrong and want to give me a kiss and get me some tissue. I just tell her Noa is sick and it makes me sad, just like when she is sick. That answer seems enough and it helps me to snap out of it and move on with the day or task at hand!
One very cool thing that has happened over the last couple of weeks, is that we have been connected with 2 different families that have children born with CDH. The amazing part is that we already knew these people from earlier 'seasons' of our lives. One of the families I knew thru a Christian school I attended in Co back in the late 90's and the other family I have never met, but the man was a roommate of Justin's many years ago and is also a dear friend of my cousins! And if that isn't crazy enough, these 2 couples know each other and have shared their stories and support with each other. Both of them have daughters that have survived and continue to thrive thru the beginning stages of this journey (one of the little girls is 6 and the other is 3). They both said they felt particularly encouraged and supported by other CDH families when they were going thru this and have offering that to us.
It feels like a gift from God to have folks that we can relate with and understand what we are feeling. We are able to share some of our 'burden' with them....even though we've only communicated through email so far. Processing questions, having feedback and sharing my fears and sadness has been helpful. Its been special to me that they are believers. In the end, we all KNOW that God is our only solid support and what we rest our hope and faith in. He is going to carry us thru this...and even is now.
Today I am 33 weeks, and am definitely starting to feel like we are nearing the end...not just physically, but preparing practically. I am mentally preoccupied sometimes~ making lists of what we need to do before she comes and trying to envision how life will be. What will her special needs be? How will we incorporate her into the family when she does get to come home? I've been told that we will have to be very careful about protecting her from germs and that even the common cold can easily turn to pneumonia with compromised lungs. How will that be possible with the other 2 babes and winter upon us? What will it look like when Justin goes back to work?
I can feel very alone sometimes. When I put my head down on the pillow (and when I wake up) my mind just wonders about all the unknowns like birth, NICU, surgery, recovery...how it will all go with a sweet little baby right from birth. It is a regular practice of letting go of all that I can't control anyways and hanging onto God. Trying to keep my heart soft and open. Life goes on...but somedays I just pretend. I am so so grateful to have Justin as my husband. He is so kind and patient and understanding. Loving me when I feel crazy.
Our Next appointment is the 14th. We'll let you know how it goes!!