Stages of Grief

People think that grief is only for those that have lost someone, but there are all sorts of situations that can cause an individual to go through the grieving process--divorce, losing a job, breaking-up, and having a child being diagnosed with some form of disorder. You find out you are pregnant, and people ask you what you want--a boy or girl. What do most people say? I don't care, as long as the baby is healthy. The day you find out your child is not healthy-whether it's discovered during the pregnancy, at birth, or when the child is 7 years ago--you are very likely to start going through the five stages of grief.

5 Stages of Grief

Stage One: Denial and Isolation

All we kept saying was no. Not our baby. Everything is ok. We can explain every single one of these “markers”. There’s no way anything can be wrong with her. The pregnancy was perfect. There are no genetic syndromes in either family. You are wrong. Doctors can make mistakes too.

It was easy to block out people we love when we had no idea what to say to them. No idea how to explain what all of this meant. It was easy to lean on each other and pretend it was just the 3 of us.

Stage Two: Anger

When I get mad I cry. I scream. I bury my face into a pillow or my husband’s chest. Eventually I ran out of tears. I would sit in the rocking chair in Arianna’s room so pissed off at the world. Why us? What did we do to deserve this? Haven’t we both been through enough in our short lives already? I wished I were more religious because maybe then I would have someone to blame.

I would get so angry looking at other moms. Mainly the ones smoking and drinking while pregnant. Here I was, never touched a cigarette in my life, and didn’t so much as sip a drink once we found out we were pregnant. How in the world was that fair?

Thankfully, we somehow managed to not get mad at each other, even when certain individuals felt the need to point out things that may have caused it (for the record, our genetics counselor said there is nothing that I could have done during the pregnancy that could have caused this—but that’s a whole other story).

Stage Three: Bargaining

Please, just let my daughter be able to have a typical IQ, and I will be ok if her body doesn’t do everything it needs to do. All I want is for her to be able to enjoy life and understand what is happening around her. I want her to live a “normal” life. I want her to be able to read and enjoy math as much as I do. I want her to know that she has a mother and father who love her. A grandmother that adores her. A grandfather that treasures her. Many aunts, uncles and cousins who cherish her.

Stage Four: Depression

 

When Arianna was in the NICU, it made sense that I would cry everyday. The stress of not knowing the diagnosis, not knowing when we were going to have her home with us, not knowing anything about what her future looks like.

Eight months later, the tears are fewer and far between. So when it got to a point where I was crying every single day, it was harder to get out of bed, I was mad at the world, I couldn’t find happiness unless I was in the same room with Arianna-I got pretty scared.

 

This was the scariest part for me. I no longer felt like myself. I felt like I was watching myself from above. I couldn’t function as well as I had been. I wasn’t motivated anymore. I would throw myself into a depressing book so then I at least had a reason to cry. I would do logic puzzles to make sure my mind couldn’t wander to the future.

I lost myself in this journey. I didn’t feel like a good wife, mother, daughter, sister, or employee. Nothing.

The absolute worst part was I would feel guilty for feeling so upset. I told my husband that I just wanted to be sad and not be judged for it. Instead, every time I thought a negative thought, I found myself reminding myself that I was lucky. Why is it that parents of children with special needs do that? I've seen it all over the internet. Yet, parents of healthy children sit there and complain about their kiddo not sleeping through the night, or they won't stop talking, or they run around too much. Let me tell you, I wish my daughter wouldn't stop talking. I wish I knew for sure she'd be able to run around too much. But, because we got this membership into this parallel universe, we know how lucky we are. We see the other kiddos at the hospital who are worse off than our own kids. We celebrate those little milestones so proudly when other parents barely notice. I'm not saying parents of healthy children shouldn't say they're having bad days, or feel guilty about having healthy kids. I'm just stating that it's funny how the parents of children with special needs are so much harder on themselves and typically don't allow that "bad day" simply because we are aware of how much worse things can be.

Stage Five: Acceptance

 

I’ve gone through all these stages, bounced around a little bit, and I hope to one day fully be in this stage. I’m not sure that will ever happen. You see, the thing with children with genetic syndromes, is that you never really know when everything is done. I’ve said it before and I’ll say it again, I hate when people say, “at least she’s healthy”. To me, a “healthy” child does not need an in home nurse; she does not need to get checked for kidney cancer every 3 months; she does not need a variety of medical equipment at the whopping age of 8 months old to do what most children can do on their own. So, I don’t know if I will ever feel I’ve completely accepted this deck of cards life handed us. Only because you never know what next issue a specialist is going to throw out at you.

One thing I have accepted and will NEVER have an issue accepting—this amazing little girl is our daughter. Her smile brightens up my day, her laugh makes me laugh, and I could watch her sleeping all night long if I didn’t need sleep to properly function. I love my little girl for who she is. She is missing some of her DNA in one spot, and has a tad extra in another spot. That’s what makes her who she is. That is what makes her this little bundle of joy that I can’t begin to imagine my life without.