A Reminder to All Parents of Kids With Special Needs That You Are Not Alone

In 1997, when Caleb was about six months old and had just undergone his second heart surgery, I decided to attend a support group for special needs moms. The first speaker was the mother of a 19 year-old son with Down Syndrome. She stood behind the podium, tightly gripping the edges. Anger creased her face before she spoke her first sentence.

“People keep telling me that I got my son because I’m such a good person,” she began. “If this is what you get for being good, then next time I’m coming back as a bitch.”

The room hushed in a communal breath. I have thought of that woman so many times. That cold night in 1997, she frightened me. I ashamedly thought she must not love her child, certainly not as much as I loved the sweet little bundle I was missing as I sat in that conference room. Now I know better.

That woman was dealing with the cumulative effects of caring for a critically ill child. It had been 19 years of hospitals, IEPs, sleepless nights, exclusion and isolation. It had been 19 years of pouring every drop of her love into every breath her child took. It had been 19 years of living with a broken dream, even if she didn’t realize that.

We all have dreams for our lives. For some it’s a happy marriage, for others a fulfilling, satisfying career. The truly brave shoot for both. Often built into those dreams is the assumption of healthy children. How many times have you heard “We don’t care if it’s a boy or a girl, as long as it’s healthy.”

What if it’s not?

I’ve said this before, but there are more individuals with special needs living now than at any point in the past. Medical advances have far surpassed community and education needs, let alone the financial challenges of raising a child who needs to be supported from every angle.

I wish Doctor Who’s Tardis could land in my front yard and take me back to that room in 1997 so I could hug that woman. I wish I could tell her I understand and that she’s not alone. I wish I could tell her to seek God’s grace in her darkest moments because I know there were so, so many.

Just last week in a neighboring county, there was yet another story of a mother with an adult daughter with special needs. The mother was elderly and feared for who would care for her daughter when she died, so she attempted to kill her daughter and then herself. This happens way too often. Thankfully the plan was interrupted and her daughter is fine, although she is now without her mother who is in jail. This story speaks to the deep well of fear that so many of us live with, about what will happen to this precious soul we have loved. We have cared for them through the hospital visits, the IEPs, the sleepless nights, the exclusion and isolation. It’s hard to imagine who will provide that level of care when we are gone.

The words of that woman from the meeting have hung over me in ghostly vapor for my own 19 years. She was part of the inspiration to write this blog, to reach out to others who are worn down. Other people’s misguided words had given her the thought that she was being punished for being good. It was pain heaped on top of pain.

Last night I had the privilege of watching the movie adaptation of Don Piper’s nonfiction book 90 Minutes in Heaven. I won’t spoil it for you, but the book jacket will tell you that in 1989 he was in a horrific automobile accident and declared dead for 90 minutes, during which time he went to heaven, only to return to a broken body and months of soul-testing recovery.

Part of Mr. Piper’s recovery was a tortuous device called an Ilizarov frame which is designed to help pieces of bone grow together in an effort to fill in the empty space created by trauma. The device is simultaneously a miracle and evil. Regrowing bone is so excruciating that we don’t have a word for that level of pain. It takes almost no imagination to completely empathize with the depression that swirled around Mr. Piper during his recovery.

In one of the final scenes of the movie, I finally saw the closed parentheses of that woman’s statement from so many years ago. Don Piper spots another person in a crowd who was wearing an Ilizarov frame. He crosses the crowd to tell the young man, “Well, that really hurts, doesn’t it?”

The young man replies, “Yeah. It hurts very much.”

Mr. Piper responds, “Yeah, I know. Believe me, I know.”

In the film, the young man recoils at first from Mr. Piper. Then he looks cynical. Then Mr. Piper explains that he was in the same device for eleven months.

“It’s horrible. It’s just horrible. It’s awful.”

“Nobody ever understands,” the young man says.

“They can’t. It’s not something you can talk about and have anyone understand your pain.”

They introduce themselves and Mr. Piper says, “You’ve just met someone who understands.”

That is what Neverland is. This is the loving response to that woman’s anguish that she was being punished for being good. We are all in the same spot. We all live a pain that no one outside can ever fully understand.

Yet I would cross a room for you and I know you would cross a room for me.

Let’s look at parenting our wondrous, special needs children not as a punishment or reward. Let’s accept that God chose a reason we aren’t able to understand. In preparation, he gave us others along our journey. We can find each other and simply say, “Believe me, I know.”

If you’ve read my bio, you know that Caleb is not actually my son’s name. He can’t consent to my writing about him so it’s not ethical for me to use his birth name. I chose the name Caleb because after 40 years of wandering in the desert, out of all of the Israelites, only Caleb and Joshua actually saw the promised land. I know that my son will stand proudly in the promised land one day. Caleb is unaware that I even write about him but after I chose this name for him, his favorite prayer partner became Moses, which is beautiful in a way that only Caleb could create.

Caleb is the hero in this tale. He is the one who has overcome and continues to overcome so many obstacles that would truly floor almost anyone else.

Just this week, my sweet giant of a boy needed to have a sedated cardiac MRI. Something is going on that routine testing is not able to tell so his cardiologist ordered this test. What should have been a 45 minute exam swelled to well over two hours. Caleb was allergic to the Tegaderm holding the IV in place. Several other medical missteps occurred which I was fortunately able to address and redirect. I know I was annoying to the doctors and nurses but two of the missteps literally could have killed Caleb so I am completely unapologetic.

After the exam, Caleb was moved to a recovery room while we waited for him to wake up. I was stroking his hair and telling him what a great job he did. Soon his eyes fluttered and he looked right at me.

“Hi, Mom. What’s for lunch?”

When this life as Caleb’s mom becomes overwhelming, I need to stop and remind myself that Caleb is doing great. He’s happy and he loves the life I’ve helped to create for him. He trusts that God is with him and that his needs will be met.

I’m the one who needs to learn from Caleb. I need to model my choices on those that he makes. I need to trust that God loves Caleb even more than I do and that he will watch over everything for this amazing young man.

In the meantime, anyone out there who is feeling like they are on the other side of the promised land, remember this: we are all here in this virtual version of Neverland. We can support each other online and through prayer. We don’t need to feel so alone.

My favorite quote from the book 90 Minutes in Heaven is this: “Sharing my experiences is my way of crying with others in pain.”

That’s it. Let’s not be isolated and angry and scared. Let’s share what we go through and cry together and work through that pain. Like the great Don Piper, let’s be here for each other.

If we meet others who are in anguish like that hurting woman in 1997, let’s simply say, “That really hurts, doesn’t it? Believe me, I know.”

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