My Grief: Despair, Anger, Guilt, Hope

We have been told, and I have previously written, that when you have a special needs child you are forever in the grieving process. Ever since I finished my summer class I think it has left me with more time to think about and process Liam. And I have learned that this is my grief:

Despair. Sunday morning after breakfast and before getting ready for church, I took my sleeping baby boy in my arms and lay in bed crying over him. A great sadness overwhelmed me as my thoughts took me to the places Liam will never go. Here, I am not ok.

I am surrounded by friends who have recently had baby boys or are just finding out they are having a baby boy. Healthy, normal boys. I am so excited for them but so sad.

I wish so badly that when we had our 20 week ultrasound the technician would have recognized that we were having a boy. I am sad that I never had the chance to prepare for him and be excited for my son.

I wish we could back up to Liam's birth day and have a do over. We were so shocked at his arrival and the immediate concerns for his health that we never experienced the joy of a new baby. By the time we were settling down we learned of his chromonsonal disorder.

I wish more than anything Liam and I were bonding. He had several factors which prevented him from being able to nurse and I am still mourning that loss.

I was robbed.

Anger. I feel so angry that I did not have the chance to enjoy and prepare for my baby boy. I am even angrier that my sweet boy does not get to experience what most boys do. Why does he not get to be quite as strong? Why does he have to suffer the frustration of difficulty communicating? Why does my little boy not get to be a normal little boy? Why do my friends get to nurse their sweet babies and share in that special bond while I spend my time washing and sanitizing bottles and measuring and mixing stinky formula? It isn't fair!

I am not able to remain here long. I have always had a sensitive conscience and been driven by...

Guilt. I am so upset with myself for feeling so sad and so angry. I am so happy for my friends and I would never ever wish anyone to have to experience what we are experiencing.

More importantly, I love my son. And God made Liam, extra chromosomes included, just the way God intended to make Liam. I do not want Liam to be anyone other than who God made him to be. Because I know that before we ever saw Liam's sweet face God knew that face intimately. And before I ever felt those first sweet kicks, God was knitting that tiny body together fearfully and wonderfully. No, I do not want to change my son.

And if Liam had been born 200 years ago he would be dead. He would have starved to death weeks ago and we would be experiencing an even greater loss. So I would say that formula isn't such a bad thing. In fact it is such a wonderful blessing because when it comes to my baby's health, I'll do whatever he needs; and he needs to eat.

So I work through the guilt and stumble into what remains.

Hope. This morning we had our first home visit with a nurse who is a developmental specialist. She will be coming once a week or every other week to work with Liam and his development. He is doing great. We are so incredibly blessed that we found out so early about his disorder. We live in a place full of wonderful resources that are allowing Liam to recieve the care he needs for early intervention. Early intervention is so crucial to any child with any sort of developmental delay or learning disabiliy. The earlier you start working with them the better they are able to grow, develop, learn, and achieve. And I believe and hope with all my heart that we are giving Liam an amazing chance at achieving so much more than we could imagine.

This is what I was thinking about as I pushed my double stroller up and down the hills by the bay this morning:

I love California. This state might fall off the mainland and into the Pacific one day but there is no where else I'd rather be while on this earth. The brilliantly clear blue sky with the brightest shining sun; the bay water glistening, and on the other side of the coastal hills the mighty Pacific waves wash over the rocky shore. The eerie and majestic marine layer rolls over those hills and into the valleys ensuring the temperature cannot get too hot and the sea breeze provides all the cooling we need (except maybe 10 days out of the year). Perfect weather and some of the most beautiful landscape in creation. It demands an acknowledgment of the All Mighty Creator. The culture is casual and laid back and the people have a desire to love and accept everyone. I love the diversity of this place and the challenge of getting along with people whose values and ideals are not my own. I cannot imagine a place that needs the gospel any more than the 98% of the population in San Francisco who are not Christ followers. And I feel hope in the way God is using the people here to minister to the needs of our family and hope in what he will do through us to share the gospel with them.

And that hope spilled into my hope for Liam. When I let despair rule me, I am not focused on Liam's abilities. In fact, allowing myself to get lost in that despair would probably hinder the growth that Liam is capable of. The anger and guilt do not help him either. So I hope in my son's future. In the abilities he will have and the independence, no matter how small or great, he will achieve. I will hope in the plan and the purpose that God has for Liam, Sophie Grace, and Joe and myself. I will hope in the rest and the peace found in my Savior.

Too easily and for too long I have allowed myself to be robbed of joy and hope. I am still working on that, but I like days like today when God uses the resources here that are helping Liam and the beauty of this place, his creation to remind me of the hope he has given.

This is my grief. This time it took about a week to go through. I think sometimes it may take hours or days maybe sometimes even weeks, months, or years. But I need, and my family needs, to rest in hope.