Our decision

Ryan and I have made a big decision in the past week.  In learning everything we have over the last several months about how sick Simon is, we don’t think that medicine can help him.  We talked to our perinatologist who reaffirmed that placing our faith in God with this situation is what is best.  As a nurse, it’s hard to walk away from medicine, but I know this is the right decision for our little Simon.  Surgeries are too risky and if he did survive, he wouldn’t likely have any quality of life.  With the chromosome disorder plus the encephalocele there are scary possibilities and we’d have to put him through so much to get him there.  We’ve started planning not for the maybe of possibilities, but for our reality.  We met with our pastor this week about a dedication and a funeral.  We met with palliative care who is helping us with so many things along the way including a birth plan so things can go just how we want at the hospital.  I’ve contacted an organization called Now I Lay Me Down to Sleep.  It’s a volunteer organization of photographers who will come to the hospital and take pictures of Simon and our family when he is born.  We’ll meet with another one of our pastors next week who is a funeral director so we can make plans for a funeral and remembering Simon.  

Last weekend Ryan, the kids and I visited my grandparents.  We talked to them about Simon and about what we had decided.  In hugging me when we left, my grandpa cried said he felt so sorry for us.  I told him not to feel sorry for us.  We are so unbelievably blessed to have what we have in our lives.  We wish this blessing of Simon was going differently, we wish we were going to take him home as a little bundle of blue joy but we’re not.  God gave us two of His children to care for here on earth and He is going to care for Simon until we get to heaven.  And as hard as it is to believe, He loves Simon even more than we do.  That is our saving grace and without that, I don’t know how we would make it through any of this.  So please, don’t feel sorry for us.  We get the gift of children and we know we’ll have the future gift of more children.  And as much as we’ll grieve for our Simon, he’s already taught us so much about ourselves, each other and our faith.  

I hope that you all will just pray for us.  Pray that we get some time with our Simon and that our marriage and our family is strengthened through this.  Pray that we have a safe delivery.  Pray for us as we go through this grief process, one that will have days that are harder than others.  Pray that we can make more memories with Simon while we are given the gift of carrying him.  And pray for Simon, that he touches many hearts and maybe, just maybe his story will help find solace and peace for others who will endure the same heartache.  

I likely won’t finish my days of being thankful.  I hope I’ve made it very clear how thankful I am for so many blessings in my life.  My mother is one of those, she is so unbelievably supportive in everything I do and I’m so thankful to have her as a best friend now that I’ve grown.  And our children.  They’re amazing, my reason for going on, the best things that have ever happened to me.  My heart would never be full without them as I would never know the gift of being a mother.