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.


Self-Care For the Special Needs Mom

A wonderful woman named Sandra Woods Peoples recently created a Facebook group called 31 Days of Self Care for the Special-Needs Mom. It will begin in October and since my invitation, the group has swelled to 233 members. There is clearly a need for this type of refreshment for special needs moms, as well as for those moms who don’t have special needs kids. Moms in general are just exhausted, so here are a few seriously simple things we can do to care for ourselves.

Whenever Caleb is not with me, I am worrying about him every second. I try not to. I really try to release it, but it’s always in the back of my head that I could be called to get him at school because that has happened so often in his school career that I can’t get past it. When he gets home from school, he needs a lot of attention, which I am happy to give him, but it does take a lot out of me.

I am confined in my home every night when Caleb goes to bed. Because he can never be left alone, I can’t run out for an ice cream cone. If I forgot coffee cream for the morning, oh well. I always take advantage of BOGO items at the grocery store and try to keep the house stocked in case of illness/weather/migraines for me. I find a peace when I don’t fear running out of something important, like coffee.

I also need lots of things to help me decompress from the day. I am very fortunate that I have this little stockpile around me; here are some of my ideas for taking care of yourself.

The first thing I do after Caleb has gone to bed is light a candle. Some are scented, some are battery operated, some are simple white unscented. The dancing light just makes me happy.

I love magazines and I’ve read that if you are going to buy two issues in any given year, it might make more sense budget-wise to get a year’s subscription. Magazines are wonderful because we can almost always find time to read one story. I am a complete Reader’s Digest junkie—I rush through each edition, finding all of the joke sections, including the little surprises at the end of some stories, then I go back and read all the more substantial articles in one sitting. It’s a like a workout—I’m happy and a little exhausted at the end.

Netflix. Just Netflix.

Well, a little more on Netflix. I have movies that make me laugh and movies that make me cry. There are times that we need both of those things. I honestly believe that sometimes a good belly laugh is as therapeutic as crying. Some of the thrillers keep me so entranced that I get to escape for a little bit into someone else’s problems that are wonderfully solved by the end. They give me hope.

The last time I cried about Caleb was when he broke his femur and went through a very long, very painful recovery. The only other time before that when I cried about Caleb was when I learned he needed a second heart surgery when he was four months old.

The rest of the time, I need to be strong for him. He needs me to be strong for him. Partially due to his autism, and partially due to him being a very empathetic kid (I know those two don’t often go together but they do in his case), Caleb can’t handle when I cry. It upsets him on a visceral level, so I often plan to cry later, but we all know how successful that tactic can be. Therefore, cue the movies. I get the cry out when he is happily sleeping.

Baths. I don’t get there as often as I should, but when I take one, it’s with two cups of Epsom salts and a few drops of essential oils—lavender, eucalyptus and rosemary are my favorites. Not together or they smell gross. Trust me.

One of my very favorite friends who is also a special-needs mom introduced me to a great idea: girl’s night at my house. I gather a group of friends and invite them over, telling everyone to bring whatever they’d like to drink and an appetizer to share. It doesn’t cost me any more than what my regular at-home dinner would cost and we all have a wonderful time. Friendship and laughter are amazingly good for the soul.

Here is my last tip, but I think it’s the most important: be kind to Future Me. I didn’t originate this thought but it first came to me when I was staying with my mom and did a few little things so she wouldn’t have to. I love her so much that I wanted to make her day easier. Then I thought, I need to love myself so much that I want to make my day easier, too.

Being kind to the Future Me means doing the dishes right after dinner so I don’t wake up the next morning to a smelly mess which sets the day off on completely the wrong tone. It’s a pain to dishes whenever we do them, so why not just get them done and put away quickly?

Being kind to the Future Me means keeping up on my laundry, folding it right out of the dryer and putting it away as soon as it’s all done. Fortunately, Caleb absolutely loves putting his laundry away. He even grabs the basket before I’m done sometimes because he can’t wait. He is an awesome kid. For those of you whose kids have OCD, like Caleb, this is a great way to channel that impulse into something productive.

Being kind to the Future Me also means making my bed every morning. It means keeping my house as tidy as I can. I sort my mail over the recycle bin, or otherwise I will end up with piles all over the kitchen, often hiding important mail, which creates a different kind of stress when I find it a month later.

I never know what the day might bring, so if I start off on with a clean house, it means that whenever I walk through the door later, with whatever chaos has rained down on us that day, the house is a calm and happy place. I take a relaxing breath the moment I enter and it helps me to deal with only the new issue at hand. When I haven’t done this, and I walk into a messy house, it raises my stress level to where it’s almost beeping as loud as an alarm in my head, which helps absolutely no one.

Another thing I have recently started is making coffee the night before so all I have to do is push a button on my way to wake Caleb up. I also set out all the items he will need in the morning, minus the medicine (he’s never taken it on his own, but it’s not worth the risk). Because he can’t swallow pills, Caleb requires all meds to be crushed and dropped on top of a shot glass filled with chocolate milk–a bigger glass leads to the meds clumping and sticking to the sides and never getting into his mouth.

Caleb’s propensity to fatally overheat requires a regular glass of low-fat chocolate milk, one of orange juice and one of water before he leaves the house to have breakfast at school. So now I set out three empty glasses, plus the shot glass, plus the spoons to crush the meds. After I have showered him, helped him dress and he is ready for the day, he watches his favorite cartoon while I fill the glasses, crush the meds and give them to him while I’m assembling snack for the day, which is laid out as well, except for the juice box, which I hope stays cool enough to last until snack time.

Being a mom is stressful. Being a special-needs mom is a different kind of stressful. If we take the time to care for ourselves it can only make us healthier moms, which in turn creates healthier kids. I know it sounds like just one more thing to do, but try picking just one idea. See if that lightens your stress load. See if it makes you happier in your own skin and if that makes any or all of your kids a little calmer or happier or whatever it is that defines your wish list for them.

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