Without a Crystal Ball

Our Journey through Chronic Illness

When you go in to motherhood, there are so many things you’re never told. You don’t know about the diapers that leak up their backs. You don’t know how you’ll learn to survive on two hours of sleep. You’re also never told that if things don’t go as planned, you might grieve.

There is shame for many of us who still have children living but find ourselves grieving. How do you grieve what’s still here? How do you not feel guilty about grieving a breathing child when there are those who’ve lost children? No one tells you grieving can be a normal part in raising a child with special needs.

I felt so alone during this process. I went through every stage, and it came in waves. Each diagnosis seemed to bring a new wave of grief. When I think back, it’s hard to believe the myriad emotions I experienced. It’s difficult to believe that within this grief was tremendous learning, tenacity and love to keep my child safe and thriving.

Stage 1: Shock/Disbelief

This was the hardest time. Sitting in a hospital with lines, ventilators and PICC lines going directly to my son’s heart, IVs galore, and sitting in stone silence. No emotions were on my face, and I remember thinking, This cannot be real. There is no way this going on with my son. I remember the hush of the doctors, and all the whispers of different medical terms I didn’t understand.

I remember the MRI coming back, and the doctor saying, “Your child has panhypopituitarism.” I was happy to have a diagnosis, but my body went completely numb. How did this possibly happen to my child? What does this even mean? How do you even process that your 3-month-old lacks all hormones in his body, may never produce his own children, will be on drugs for his entire life and may also have significant learning and development delays?

You don’t. You shut down and are in complete shock. My shock phase lasted throughout his hospital stay and well into the first months of caring for him.

Stage 2: Denial

This set in for me around month two of being home with my son, Von. I was in complete and utter denial that anything he had would make him any different than any child around him. I pushed hard for him to hit milestones, and they came and went and the milestone was always delayed. I didn’t believe he’d never be able to live off hormones. I prayed someday they would find a cure. I refused to believe his condition would affect him developmentally.

Stage 3: Bargaining/Guilt

These are two separate stages, but mine seemed to come at the same time. I felt the need to try to not only figure out how I missed it, but also felt tremendous guilt that I somehow caused the illness. I started looking for reasons for why this happened to my precious little boy. Did I drink too much coffee? Was the allergy medication to blame for his lack of pituitary gland? Did I have him at the right hospital? I kept telling myself I could’ve prevented this from happening. This could’ve been different.

I looked in every single place and direction; I uncovered rocks and dug through dirt trying to find the answer. I always said, “What if the doctors would’ve seen it? What if they had diagnosed him earlier? Would that mean he wouldn’t be so behind in every single area? Would that mean something could have been done earlier? Would I have been able to save some of my child’s pain?”

Stage 4: Anger

Everything made me mad. Why did my son have to go through this? I would be in tears watching a typical child walk, talk or feed themselves. I would compare and contrast. I would play games in my head about how other families should have to go through this, too. I was mean to people I just met. My fuse was short, and words I would never say otherwise came out of my mouth. I got in fights with friends I loved dearly, and I became so isolated in anger, I felt like I was being suffocated in negativity.

Stage 5: Depression

Once the anger subsided, the depression came. It was a wave of complete and utter sadness. I cried so much during this time, and truthfully, this was not too long ago. I tried to imagine what life would look like for him. I’d find myself stuck in these thoughts about what happens when my son with disabilities isn’t a cute little toddler, but a grown-up. Will people be as accepting of him and his disabilities? Will the world be kind to him? I was sad thinking about an uncertain future. There were days getting out of bed was a chore. I often felt like I was living in someone else’s life.

Stage 6: Acceptance/Hope

This came at a strange time. In fact, it only happened a week ago, and this moment and breakthrough was the most powerful thing I’ve felt in a long time. It was a normal doctor’s appointment with a developmental pediatrician. We were going through a list and itemizing delays and areas where Von is struggling. I laid it out for him so he would understand what we were coping with and how we were working through it in therapy. Then suddenly the doctor said, “What does your child do well?”

In over two years of medical appointments and therapy appointments, that question had never been asked. I sat there almost dumbfounded and fumbling for words. I realized I didn’t know what he did well because no one ever asked me. No doctor ever asked or cared he was this tiny little human just trying to grow. In that moment, a lightbulb went off.

My son is a happy little boy. He loves to play with trains, roughhouse with Daddy, and he’s great at giving the most amazing hugs. He’s got the easiest and happiest disposition despite the needles, medications, therapies and hospital stays. He is an inspiration to everyone that meets him. In that moment, I found my acceptance and hope. I see him thriving. I see him doing things at his own pace, and he’s becoming the boy he was meant to be. He’s changing the community’s view of what disability means, and he’s doing it with a big smile on his face. If he can smile in the face of adversity, then I can, too. I have hope.

It was a long process, but I’m grateful to be on the other side of this experience. I know more grief might come and go, but I hope through my journey you can find your own hope and acceptance and know that there is nothing more powerful than hope.

 

This also appeared on the Mighty

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