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.

The Bane and the Beauty of Social Media When Your Child Has Special Needs

We’ve all been there. You’re having a really difficult day so you go to Facebook or Instagram for a quick mental escape. At first it’s fun to scroll through and see what everyone is up to, but then it hits you.

Everyone looks so happy. Everyone is doing something you aren’t able to. Everyone looks carefree while you are trying to figure out how to get poop handprints off a wall. You’re trying to figure out how to make a nutritious meal out of Kraft Macaroni and Cheese and ramen. You look to the pile of laundry that is so old you need to add more laundry before you can even begin.

Here’s the thing: the pictures of the happy people are often illusions. They are often the one spot in a difficult day. The poster, special needs parent or not,  may be having just as challenging of a day as you but that one picture gives them hope to get through the rest of the day, so they post it.

When your child has special needs, Facebook envy is even more compelling. As I write this, there are gardeners loudly spreading mulch with various machines throughout the community in which we live. About every 180 seconds Caleb comes to me and says, “Man go home. I don’t like man.”

We have worked with his developmental pediatrician and his therapist to figure out why this bothers Caleb so. I think it’s a combination of fear (because the men wear masks), sound which hurts Caleb due to Hyperacusis, and disruption of his routine. Nothing helps and today will be a very long, very difficult day.

A few moments ago, Caleb left his room to come and tell me again how much he doesn’t like the man. I stopped typing, went to hug him and he pushed me away and began hitting himself in the forehead with both hands. Trained for years on how to handle this, I kept my face neutral and asked if I could do joint compressions on him, which he allowed. They calmed him for a moment but then he screamed, “Man go home!” and hit himself again before returning to his room.

This week a dear friend’s son, who is exactly my Caleb’s age, graduated from boot camp with the Marine Corps. My heart swells with pride for him and his family, remembering the little boy with chubby hands who ran through my house giggling in glee. I study this young man’s official Marine photo and marvel at all he has gone through in three months to earn this incredible honor. When my mind pipes up with “Caleb is still completely floored when he hears a lawnmower” I shush it and focus instead on the glowing family surrounding their amazing son.

I’ve written before how Caleb should be a sophomore in college now. It’s easy to forget this until I see pictures of his peers and all they are doing. I know I would have different worries if he was away and I remind myself of that often.

On one of the many special needs support groups I follow on Facebook, a mom wrote of going to a carnival with her family. Her four year-old daughter is on the autism spectrum and it was nothing short of a miracle that the family made it through the day without tantrums or meltdowns. The mom wrote of the victory of this moment. My immediate thought was that they probably passed families who looked at them with envy, wondering how they were able to have such well-behaved children.

We can’t know everything from looking at a picture. We can’t really know anything. We can’t know that perhaps the couple having the expensive meal is drowning in debt. We can’t know that the happy-looking family on vacation is dealing with untold stress that they keep to themselves. We can’t know, so what good does it do to think beyond the picture?

Moses, Caleb’s favorite Bible dude, had it right when he brought God’s Commandments down from Mount Sinai. All of the Commandments are sound, but “You shall not covet anything of your neighbors” is particularly applicable today.

Parents of children with special needs are often so broken from years of diagnoses, doctor visits, sad school reports, exclusion from social events and even more dire diagnoses that we are living below the surface. I had a physical therapist tell me that even my breathing is affected—it’s shallow because I am in a constant state of fight or flight. Like today, do I fight Caleb’s intense fear of the noises outside and try to help him through it, or do we take flight and escape the sounds, only to be 100% committed to do that every time there is work in our neighborhood?

It is so, so hard, believe me, I know, to stand our ground and try to work through difficulties. It’s exhausting and it draws upon resources that are already depleted. If looking at photos on Facebook or any other site pulls you down, maybe a sabbatical is needed. I have several friends who have tried this and felt great relief. We didn’t used to know so much about our friends. Perhaps when we are already feeling excluded and challenged by our lives, it’s best not to see what everyone else is presenting as their life.

On the other hand, I find great comfort in the support groups on Facebook. We share stories, offer comfort or solutions and just commiserate. Like I hope this blog does for anyone reading it, these groups remind us that even though we face inordinate challenges on a daily basis, we are not alone. We are never alone.

When your child has special needs, at whatever level along the endless spectrum of abilities, it’s natural to compare your life to others. My incredibly wise grandmother used to say: “If you’re going to be jealous of anything in anyone’s life, you have to be jealous of everything in their life.”

Her words echo in my head constantly and leave me able to say, with full sincerity: “If Caleb had to be born with all of these challenges, I am so grateful and privileged to be his mom.”

It is my hope that in peeking behind everything you may see on social media, you are able to say that too.

Anything But Toy Story 3

So it’s Christmas time and we have our tree up and lit and it looks gorgeous.  Caleb really could not care less about it—he really wants the presents that are under the tree, but until then it’s just furniture to him.  I used to try to get him to help decorate, and even bought him a new ornament each year to try to encourage his participation, but a few years ago I figured, “Hey, it’s not his thing.”  I don’t think most teenage boys are chomping at the bit to decorate their trees, and I owe him the courtesy I would show any of them who declined.

Today I was dusting nearby the tree.  It is next to a window with wooden blinds.  Somehow, while I was dusting, Caleb’s Mr. Potato Head ornament became entangled with the string controls for the blinds.  I was laughing (by myself) pretty hard so I posted the picture on Facebook with the following caption: “Woody.  Buzz.  On.  My.  Go.”

I was still chuckling after I finished the rest of the cleaning so after I showered Caleb and got him into some fresh pajamas, I suggested we watch a Toy Story movie.  Any Toy Story movie.  I told Caleb to choose while I was showering.

He picked Toy Story 3.

In addition to the wonderful bright star that is Caleb, I also have a beautiful, wonderful, brilliant daughter named “Sophie” who is away at college in another state.  It thrills me to the depths of my soul that she is able to have this opportunity.  It thrills me that she has managed to escape from the rather difficult world that Caleb and I inhabit.  As much as I stand behind her, encouraging her and helping propel her along, I miss her.  With every breath.  She knows not to let me watch Toy Story 3.  But she wasn’t here to stop the carnage today.

I made Caleb his favorite soft pretzel and he and I got under our favorite big blanket and hit “play” on the movie.  I was doing okay.  I was thinking I could make it through this time.  My eyes filled up when all the toys realize they are drifting down toward the junk yard fire.  Caleb, who senses every hair on my head, instinctively looked at me during that shot.  I proudly smiled at him and said, “It’s okay.”

Allow me to back up for a second.  When I say Caleb senses every hair on my head, I am not exaggerating.  I’ve been told Caleb has face blindness and that he feels others’ emotions too deeply.  They hurt him.  Caleb can read my emotional temperature with head-aching accuracy.  I spend the hour before he arrives home from school picking off the emotional cobwebs of the day and putting myself into a happy place.  This was the suggestion of several therapists—if Caleb’s afternoon is easier, so is everyone’s.  Often, I fall apart after I’ve read him his bed time story and tucked him in.  But for the three hours he is here after school, it’s all happy times.  With all that he struggles with, it is one of the most important ways I take care of him.

So… back to the movie.  Right about when the toys were washing themselves off with the garden hose, I felt it.  Tears pricked at my eyes, and I felt the heartache of Andy (and Sophie) leaving for college, like it was the first time I saw the movie (during which my 10th grade Sophie incredulously whispered “Mom, you HAVE to stop doing that!).  Maybe I’m still working through Sophie being gone.

Now having had a few hours to digest the episode, I think I was definitely mourning Sophie being gone, but I’m also mourning that Caleb, who should be graduating this year, will never go to college.  All the kids who were babies when he was are moving on to other things—not all are going to college, but they are all graduating high school.  If Caleb ever lives on his own, it will be in a group home, something he has told me with ferocity he is nowhere near wanting to do.  All the dreams I had when I was pregnant with him (you know, Heisman trophy winner, debate team captain, valedictorian and salutatorian since he was so gifted) are settled around my feet like wilted confetti.  I’m learning to step over it, but it is hard.

Until this: I was thinking back to when Toy Story 3 came out in the theaters.  Yes, Sophie was annoyed, but Caleb kept leaning forward in his seat at every emotional moment.  When he saw my tears, he hit himself in the head a few times.  This was an improvement over the decade leading up to that moment, when my tears automatically caused his tears.  He would run screaming from the room, until I mostly learned to swallow tears.  But that’s not healthy so I started to let myself cry around him, telling him I’m okay, and it’s okay for people to cry.  And this afternoon, for the first time, he was accepting of that.  Caleb wasn’t happy I was crying (we did have to call his sister on the phone—she told him it was okay, too) but he didn’t scream.  He didn’t hit himself.  He cycled through his usual panic modes—asking for no bedtime story (a self-imposed punishment or communication that he just can’t handle me at that moment) but then he came back to center.

This is huge progress and it almost happened without my acknowledgment.

While I won’t be watching Brian’s Song or Heaven Can Wait (that one slays me every time) I am sitting here so proud of Caleb.  And it’s vindicating too—I was told years ago that he would stop learning, stop maturing, but he just made this huge milestone at 18!  As I have done Caleb’s whole life, I listen to the experts and take their words with all respect, but I also know this young man better than any of them.  And I know he’s not finished yet.