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.


Unmeasurable Progress

For all the new parents out there, you either are or will soon be overwhelmed with all of the developmental growth charts.  When did the baby first reach for something?  Follow you with his eyes as you walk across the room?  I think there’s one for cooing too.  Then, the big ones: first time rolling over, first crawl, first step…  You get the gist.

For us special parents, this process is radically different.  You may be at a playground or a doctor’s waiting room when you notice, without even trying to, that a baby of a similar age is doing three or four more things that your child can’t.  You look down at the baby you love so much that your heart is leaking all over your insides.  You don’t want that precious child to even know they have missed something.  So you switch him to the other hip, gently turn your back on the others, and suddenly find the wall or window or any other place to be fascinating.

Still, at every doctor visit, there is a list.  When Caleb was very young, some of the doctors tried to treat him like every other patient.  They would get out their list with a big smile and say, “Okay, what are we doing now?”  After several shakes of my head (even then, I didn’t want to verbalize and answer, which could make Caleb feel bad about something over which he had no control), they would stand up and cheerfully say, “Well, maybe by the next visit.”

Fortunately for Caleb, we attended a clinic at the Children’s Hospital of Philadelphia when he was around six months old.  After seeing what felt like 40 specialists over two days, those doctors were able to get the ball rolling with Early Intervention, a term that is both wonderfully hopeful and sadly draining to most of us.  At one point we had 9 therapists in the house every week, doggedly working on speech, movement, attention, eye contact.  I was still desperately clinging to the thought that all of this intense help would help Caleb propel into preschool with all of the other neighborhood kids.  Until one day his physical therapist said to me, “How many other people on this street have PTs working in the home with their toddler?”  Harsh words, but harsh words became benchmarks for me.  Like a punch to the gut, if you can tighten your abs ahead of the blow, it is much easier to take.

Caleb has now been in school, in special, self-contained classes for over 16 years.  I can’t calculate how many IEPs we’ve attended.  I can remember the name of every teacher, especially the ones who are as entranced by this young man as I am.  I have become close friends with several of them.  When Caleb was in first grade, the wonderful, energetic and completely accepting young woman who taught him would come to our home and help us work out some behavior problems.  He melted into her one afternoon, and I could see the gratitude on his face that she understood him, and had helped me to as well.  Another teacher whom I now regard as an angel on earth became certified to work in the home with Caleb after an accident left him homebound for three months.  She worked so diligently with him and told me that she wished she could always work this way with him—he made so much progress.

Which brings me to the point of this particular entry:  Caleb’s milestones, missed and achieved, have been analyzed and catalogued ad nauseam for his entire life.  In several evaluations, he has been reduced to numbers or conditions or medical diagnoses.  I have been told by several specialists that he has plateaued, that where he is is where he will remain.  That is what their tools tell them.

But Caleb has his own tool box.  Along with the wonderfully affirming people in his life, he is able to pick out a tool and use it to access areas in his brain that I used to see as closed-off construction zones.  I have no measurement available to evaluate this dynamic, so I am calling it “Unmeasurable Progress.”

I’ve mentioned Caleb’s therapist before—this man has found a way to ask a question and receive a clear attempt at an answer from Caleb.  We can walk into his office with Caleb slightly slumped over, a frown tugging at the corners of his mouth, and when we leave 30 minutes later, Caleb is back to bouncing on his heels, and doing what the family calls his happy dance (waving his arms and leaning forward in a way that is just pure joy).  This therapist makes Caleb feel heard and even if I don’t fully understand the exchange, I rejoice in the metamorphosis.  This very kind man also told me that he thinks everyone underestimates Caleb.  He says Caleb could not have his very infectious and clever sense of humor if there weren’t intelligence to back it up.  I can’t measure that statement in codes, but it made me feel about three feet taller.

For the past two years, Caleb has attended a school with a very dedicated teaching team of three women and he absolutely adores all of them.  At some point in the first year, he began asking me to email his teacher in the morning before he left for school.  Caleb loves to quote TV shows or movies and he uses those quotes as communication.  His language is delayed and disordered so if he can mimic what someone else said, sometimes it makes sense and he can have a real conversation and know, like with his therapist, that he has been understood.  So every morning, after shower and medications, while waiting for the bus, he will ask me to email his main teacher, who has a laugh that warms my heart while I’m just sitting here thinking about it.  One day this week, he wanted me to tell her that he and I were watching the “Friends” episode where Joey, Chandler and Ross go to a hockey game and Ross gets hit in the face with the puck.  Caleb was laughing so hard that we had to rewind the scene a few times.  Without context, maybe his teacher would not have been able to place “Ross gets hit with hockey,” but with the email, Caleb and she were able to laugh about it as soon as he got to school.  This teacher, another angel on earth, has repeatedly told me she loves the emails because she knows they help foster this communication.  By reading the email first, she can catch what he is saying when he arrives in class.  I don’t think this technique even has a name, but it has created huge leaps in Caleb’s language skills.

After Caleb goes to sleep, I check on him at least once before I go to bed.  He’s almost always asleep but remembers this and almost always thanks me in the morning.  A few nights ago, he was wide awake so he asked me to sit with him for a few minutes.  For some reason he started remembering a “Berenstain Bears” episode where Papa got the hiccups.  In real life, if my daughter or I get hiccups, I can almost hear air raid sirens because Caleb becomes extremely, profoundly upset at hiccups.  So when he stated the line from the TV show, he ended with Papa having a hiccup.  The next time he said the line, I jumped in with a (blessedly) fake hiccup and Caleb emitted a laugh that began deep in his belly, and worked its way up, until he almost had happy tears in his eyes.  When he stopped, he said, “Again,” then repeated the line from the show and I jumped in with the hiccups.  This went on for 9 minutes.  I don’t keep records like this, but I do believe that is the first time in 18 years we have had a back-and-forth conversation for that amount of time.  We were both tired when it was over so I kissed him on the head and told him I would see him in the morning.  He talked frequently about the experience for a few days, and still asks me to jump in with a hiccup now and then.

These Caleb milestones wouldn’t fit on a chart and could not be graphed or diluted into numbers.  What tools can show a leap in conversation skills and the demystification of something that used to frighten him?  Still, these steps propel me forward with hope, because this child has not stalled.  He’s still growing.  I asked one doctor years ago, if typical adults still can grow and change, why can’t he?  The doctor said it would be different for Caleb, but I am ecstatic to shout that he was wrong.  Watch your kids.  Try to remember where they were a few months or a year ago.  Even if it’s something little, there might be progress.  You probably won’t be able to show it off at the playground or doctor’s office, but you can tuck it into your heart and it will help melt away the sadness that might be left over from missed milestones from someone else’s agenda.