The Sun Also Rises

Baby Jack February, 2003

A tough beginning

When I found out my 1 year old son Jack had “global developmental delays,” I thought my life was over. It was 2003 and I had felt a creeping sense of dread over the previous few months, but I chalked it up not being an engaged enough mother.

I should stop being so lazy, I thought, though in retrospect, it was my exhaustion speaking. Tiredness brought on the self-blame and doubt. Rather than putting him in his bouncy chair and turning on music, I thought I should play with him for hours. I used to love to babysit, why is it hard for me to connect?

He slept poorly and cried often. I felt disappointed in myself as a mother and like a bigger baby than Jack! This was definitely not how I envisioned my long held dream of being a parent. That there were going to be some difficulties, sure, that was to be expected, but it seemed like every single thing we had to do with Jack required a huge complicated effort, with questionable payoff. Other people were parents and took their babies’ challenges in stride, I thought. What’s the big deal that he was always awake, always hungry, always crying? Never crawling or attempting to walk?

The start of our special needs journey

December 8, 2003 was the day I knew my life would never be the same. In fact, this date to me was the start of our special needs journey. Jack was at his one year check-up and I had expressed my concern that he was not walking or crawling. This was the first time we had seen this particular pediatrician, who just happened to specialize in developmental delays in the practice.  He was an old-school kind of guy, someone who did not mince words.

This doctor gave it to me straight. “You are absolutely right to be concerned. Your son appears to me extremely delayed in everything and I do not believe he will be able to function independently as an adult. You should love him, take care of him, and when you cannot any longer, you put him in a home.”

Whoa, this was a lot to take in.  At previous well visits with different doctors, they all said that since Jack came via c-section a month early and was a boy, delays were normal. I had been under the delusion that this doctor would scold my parenting, I’d get some tips to help Jack, and everything would be fine. I was profoundly mistaken.

Shock and despair

Fortunately, my husband came with me to this check-up so I didn’t have to absorb the shock alone. I cried hard and felt numb at the same time as I heard the pediatrician from a seemingly far off distance tell me the basic tests we should have done for our beautiful child. His words didn’t make sense anymore and they were just sounds.

I felt guilty that while I was crying some for Jack, I was also sobbing extra hard for myself. My life would be forever altered and harder than just the everyday struggles of raising a kid. My dreams for him were shattered and there was fear as well. How could I handle the responsibilities of raising a child with special needs when I barely had down the mechanics of caring for a baby? Would we get a concrete diagnosis? If we do, will we be able to envision what kind of life Jack would have as a child? An adult? And anyway, who was this seemingly foreign child that minutes before was my son Jack? The words “globally delayed” and “early intervention needed” briefly made a stranger of Jack to me.

Finally, I choked back some grief and looked at him again. Yes, there Jack was. He was in his own world, consumed with his own unknowable pains and struggles, but I loved him nevertheless. We will get through this, I vowed.

It will take time, but you will heal

Those of you who are reading this website may be around where I was in 2003. You may feel numb, scared, sad and angry that a rare genetic syndrome has come into your family’s life. I get it and feel your pain.

What I wish someone could have told me then and I want you to hear from me now is that it will be ok. I’m not just saying that. It will feel impossible a lot of days and you may feel stuck. Don’t despair. It will take a while to get over the shock of a diagnosis and you will have periods of grief. You will get through this and learn things about yourself and your child that will surprise you.

Jack has changed the way I view the world and has influenced how I parent both him and his typically developing younger sibling. Don’t get me wrong, there are times when I struggle to make it through the day, but I have learned to take the long view.

A tiny part of the person I was is frozen back in that pediatrician’s exam room, broken-hearted and afraid. However, that is not the person I am today. Today I am laughing and crying, living and feeling intensely and not taking any small victory for granted. I wish that for you. It will not happen overnight, or possibly not even next year, but it will happen. I promise.