Grief and the Special Needs Parent

When my son Caleb was born in 1996, he was taken from me by ambulance before he was  12 hours old to have open-heart surgery in another state. Recovering from my second C-section in 17 months, I was forced to wait four days in a maternity ward, crying and staring at the wall, ignoring the hushed whispers of everyone who passed by my closed door. Finally, I left early, against medical advice, so I could see my son one more time before he might die.

I thank God that Caleb survived the surgery. I marvel at doctors who could create an aorta out of cadaver tissue and use a tiny piece of Dacron to close a hole between Caleb’s pumping ventricles.

Three weeks after surgery, six white-coat doctors came into the room to tell me that open-heart surgery was only the beginning. I had heard the term DiGeorge Syndrome (now called 22Q Deletion Syndrome) bandied about by different doctors during my time at the children’s hospital but the words didn’t stick, falling like non-metal from a magnet.

The doctors who came into the room were an immunologist, a neurologist, a general pediatrician, two geneticists and Caleb’s cardiologist. I listened in stunned silence as they told me that Caleb had this genetic syndrome and would require life-long care, a litany of therapies, special schools and a host of medical specialists to keep him healthy. They meant well. They were equipping me with vital knowledge.

I hadn’t processed the trauma of Caleb’s birth. I hadn’t processed that my four day-old baby had to have his ribs cracked open, his brain put on ice and his circulation stopped for an hour while his heart was surgically corrected. I hadn’t processed the four missed spinal tap attempts when he developed a fever.

When the doctors were about halfway through, I simply fell to the floor. Another parent in the shared hospital room came and helped me into a chair. As soon as I sat down, it felt like I would fall through it, circling endlessly down a rabbit hole.

I eventually got up and was sent home briefly due to risk of a nervous breakdown which I was probably already having. When I brought Caleb home a few days later, I was immediately thrust into being the full-time caregiver of a critically ill baby. Nine therapists flooded our home every week, we had at least two doctor visits each week and Caleb was severely sick for two weeks of every month for two full years.

When Caleb was four, during a routine check-up, his developmental pediatrician calmly tossed out that he was mentally retarded. I stopped breathing. I truly didn’t know. I didn’t want to know. Numb, I went home and fell into the first of many deep depressions. Grief pulled at me in shadows but I kept hiding from it.

Over the years, there have been month-long illnesses, hundreds of tests, horrific injuries and more unwanted diagnoses. Each one consumes me. Once it has passed, I have to remind myself to take time to grieve. It’s not an easy thing to do.

Grieving feels like a betrayal of my son. He’s still here. He’s still breathing. What right do I have to grieve?

Years later, I met with the children’s hospital at their request to tell them about the experience of finding out that my child was so sick. I told them I understood their intentions and was grateful for the information. I then told them that when they tell new parents that their child is not healthy, they also need to tell them that they have permission to grieve.

A few weeks ago, Randi Zaila posted a profound blog, Grieving My Living Child. She wrote: “My child is alive yet I grieve my loss over her every day. How awful others must think of me if they have actually lost their child to this world in both the physical and spiritual sense.”

Grief is a relentless bastard. As Patton Oswalt wrote in a gut-wrenching post about the recent loss of his wife: “Grief makes depression cower behind you and apologize for being such a dick.”

Grief can’t be quantified, compared or explained but it needs to be painfully endured. I was so impressed that Randi Zaila in only 10 months of being a mom to a child with special needs already understood that she needs to grieve the loss of a healthy child, the loss of the life that every parent expects to lead.

I wrote Randi that she will continue to grieve throughout her daughter’s life. Her grief isn’t over. She will need to process it many times or risk falling completely apart.

That’s the other thing about grief—just when you think you’ve gone through the worst of it, it shows up again, knocking at every window and darkening every door.

Caleb will be 20 years old in a few months. I have finally learned to grieve without negating the privilege of having him here.

I’ve written before that one of Caleb’s contemporaries became a Marine this year. Some of the kids who started out in special education with Caleb have graduated and found jobs. Others are in college or travelling the world. Though I rejoice for them, they are all reminders of what Caleb won’t be able to do and they are all triggers for grief.

This week, Caleb’s teacher told me that I need to focus more on all that Caleb can do. She’s right. He has come so far. Hope can deflate grief and I intend to draw that weapon more often.

What gives me the greatest hope is that mothers like Randi Zaila may signal a sea change in parenting special needs children. If they have gotten the message about necessary grief at such an early stage of their parenting, it will only strengthen them and prepare them for all of the challenges to come.

I pray that along with permission to grieve, these truly special parents are also imbued with hope to pull them out of it.

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