What Grief 'Looks' Like When Your Child Is Medically Complex

Grief is a very real, raw thing. It can look like many things. It may be the mom who is struggling to keep it together at work, sneaking away to cry in the bathroom during breaks.  It may be the dad who goes through his day without any direction because he knows there’s nothing he can do. It may be the parents who appear the strongest who are grieving the hardest.

Grief can happen at any time in life. You don’t have to have a death in the family to know grief. I know grief all too well and I struggle with it every single day. The moment we heard the words “Alexander disease” and “three-to-five-year life expectancy,” I began grieving.

I grieve for my child, who was at one point healthy, vibrant, and full of life. I grieve for the life we dreamed of having — watching our child play sports and having play dates like typical kids. I grieve because my daughter is of the age where she’s beginning to understand her limitations.

I’ve seen firsthand how other children see her differences. She is already being alienated because of them. Her cousin, who is 10 months younger, knows she’s different and it’s hard for her to understand. Jordyn knows she is different than other kids her age and it upsets her.

Sometimes it hurts me to hear other kids comment “Why does she wear braces?” “Why does she walk like that?” “Why can’t she talk?” “Why does she wear diapers?” I know they are harmless questions, but it still hurts. It devastates me inside, seeing Jordyn struggle so much. She hates that she cannot walk like she used to. She’s very aware of her limitations. She cries often because she can’t do anything to “fix” it. I cry often for the same reason.

She is still having multiple seizures a day. She loses her balance and falls. She has bruises all over her face most of the time. She can’t crawl without losing her balance and hitting her head on the floor. It’s unbearable for me inside, when she’s crying because she’s thrown up yet another tube feeding. The pain in her eyes, the desperation in her cry. It’s all too much to handle sometimes.

Yet, as her advocate and mother I have to push forward. There’s no other choice.

She has to see that I believe in her. 

She has to know there’s hope. 

She has to know that she has a large support system lifting her up. 

So, we press forward. We deal with each symptom as it comes. We lose sleep, we pray, we cry, we hug. We yell, we fight, we get angry and we start all over again the next day.

Life is hard. We are nearly three years in and it hasn’t gotten any easier. It most likely will only get harder. That is our reality. All we can do is push, fight, pray, and love like there’s no tomorrow.