Being a special needs parent shouldn’t be as isolating nor as awkward as it is. If you have been through a long term nicu stay, it should not be met with awkward sympathy nor should it automatically shut other parents up. I mean, yes, back when I was living at nationwide children’s hospital alone with only my infant, it did get depressing to see how many people came and went. It was a bitter sweet thing to see so many people make the going home announcement while I was wondering when would it be our turn but she’s out now. She’s out, she is healthy and most importantly she’s a survivor. We don’t want sympathy for what she went through. We’d rather have excitement that she made it.

Of course, when you’re the parent of a special needs child meeting other parents who are comfortable around your child is also a challenge. My daughter is and isn’t special she is now 6 and in 1st grade, she’s able to read starting to write and her speaking is finally starting to make more sense. It still gives me anxiety when she’s around other kids. We’re trying to teach boundaries but she’ll still go up and point out an animal or character she really likes on a kid’s shirt. I’ve seen nervous looks on kids’ faces. I do know the ones who are around her on a regular basis like her. When she was in preschool her classmates got excited to see her and I’m still recognized as her mommy. I guess it’s projection from when I was made fun of as a child for walking and talking so different. There are obstacles dealing with lifestyles as well. We see several specialists throughout the year and a few therapies for 1 hour 2 times a week, add that to school work and toting around a fully healthy toddler and meeting people is even harder. I haven’t found baby and me classes near me nor have I found mom meetups like I have read about. Maybe my town is too small, maybe we’re all too busy or maybe I’m just not in the right network to find them. On top of having a premie with a nearly 1 year nicu stay, we also lost our 2nd baby to a deadly birth defect called Anencephaly.

If you think a long term NICU stay is stressful, try being told that this baby, the next baby, the one that you really want to add to your growing family, the baby that you were really excited about is not going to survive. Not only that, but the baby has a severe birth defect that affects the way the baby looks. You read online and you look up the condition and everything that you see is just people disrespecting the babies calling them such horrible names and everything. It just ends up being too much and you are even afraid of mentioning what the defect is called. Amazingly; on the same day, in the same room, in the same hospital, another woman ended up getting diagnosed with the exact same condition. I went home that day, looked it up on Facebook and found a large support group for the defect. We were discussing where we were from and she and I just happened to meet. We spoke on Facebook and teamed up for the March of Dimes. We both do the march every year in both of our babies’ honors. I bet it’s going to be a lasting friendship because of the way that we met.

I’m at a point now with trying to meet people that when I talk about my 2 living kids I feel guilty if I don’t mention one whom I lost, but when I mention her, it brings awkward silence. I have been reading more blogs and more posts and seeing more pages in social media that are trying to break the silence of baby loss and make it less of a taboo subject, but until that day I guess just mentioning that you lost a child will bring the conversation to a close.

It’s not that those of us who have lost babies are wanting sympathy we’re just wanting to find a way to keep the memory and to mention “Hey she was alive, she was here but now she’s not.” It really shouldn’t be so difficult for people to bring up in discussion and it shouldn’t be difficult for those of us who are raising babies who had an extremely rough start; or those of us who have gone through the nightmare of losing a baby to meet other parents and actually have conversations without the conversations turning morbidly serious. Yes, my daughter almost died multiple times. She and I both did. She did have an extended NICU stay and she did have to have multiple surgeries but she’s here now, she’s alive, she’s healthy, she is very happy so why should we be expecting sympathy? And I mean yes, my middle daughter would be 4 years old, she would be going into preschool now, she is not here but she did exist- she was born, she lived and she died. It has taken us a while to accept it. It happened and we had to accept it. We can’t just live in the past and still be depressed with 2 living children who depend on us and depend on us to teach them how to handle the cycle of life and death.
Why does it make people so uncomfortable to discuss? Why does it kill conversations when you’re just trying to mention your other child’s existence or are joining a conversation about pregnancy? I try to keep from mentioning my first 2 pregnancies when I’m speaking with a woman who is pregnant with her first and nervous but talking to friends, I don’t understand why it’s either “I’m sorry” or another way of showing sympathy when the first little girl is healthy and happy now. Skinny, but healthy.

I hope the efforts people are making work and one day talking about less than perfect pregnancy experiences aren’t the taboo subject they are. There are women and men suffering in silence and talking openly helps people newly walking that path see they’re not alone.