Remember when you first found out the path you were on with your child wasn’t the path you had planned? It feels like ages ago that I was in a hospital room in late January with the very first cold front of the season coming through. We live in south Florida. Us year round flip-floppers get super excited over a day of boot weather… but I digress. We’re here to figure out this talking about your child thing we special needs mommas may struggle with.
Riley was born, 6 weeks early and I was laying in bed, my husband, brother and sister-in-law in the room visiting and waiting for the doctor to come to talk to us about how her exchange transfusion had gone. Our path changed dramatically that day. Talking about your child has a different meaning now.
We talk about our child(ren), brag about their milestones, and can’t wait to show the latest pictures of them. Everyone wanted to see this miracle baby, and we honestly loved showing pictures of her, she was gorgeous (still is). All our relatives, friends and most of our co-workers knew a little of our struggles, and quite frankly, there were quite a few people who were just afraid to ask about her.
I always found it difficult to talk about Riley. I know it shouldn’t be, but it is. In no particular order… She’s medically fragile, has hydrocephalus, epilepsy, surviving twin, a stroke survivor, and globally developmentally delayed. She’s also doing amazing things that doctor’s said she would never do, like eat without a g-tube, smile, laugh, see and hear. I love telling people how she gets excited when she hears her brother laughing, or calms instantly when Grammy sings her favorite song or instantly falls asleep when her Grandfather snuggles her close.
The First Year
The first year was rough. Riley was in NICU for almost a month, then we started noticing other issues, like not being able to hold her head up, and these odd jerking movements with her arms and body. Her neurologist assured us it was nothing to worry about. About a week after getting a second opinion she was having her first brain surgery. From there, things got a little worse before they got better. Read our story here.
At this point, when people ask me how she is, instead of telling them how she really is, I typically respond with “she’s fine.” I didn’t want to be that Mom that seemed like she was angry at the world, but I really was angry at the world. My daughter was fighting every single day and I couldn’t talk about her with people who were generally interested. It wasn’t anyone other than me that couldn’t handle all that was going on.
Riley is 3 now, and she’s been doing really well. Today at work, one of the newer team members was asking about her and for some reason, I talked. This is odd behavior for me. It’s not that I don’t enjoy talking about her, I really do. It just tends to get awkward at times during the conversations because the other party doesn’t understand.
That doesn’t sound very nice of me, does it? What I mean by they don’t understand is that they don’t get what’s it’s like to have to deal with this all the time, 24/7. They hear that she’s going through a really difficult life, and she is, but this is just another day for us and it doesn’t bother me. It doesn’t bother me because I live it. This is our norm.
Is it Chilly in Here?
Today’s conversation was still very odd, not the discussion itself, but how I was discussing it. I felt almost detached, and emotionless. This is not normal for me. I almost always tear up when I talk about stuff with Riley and her health, the things she’s been going through. Today it was like my emotional switch was shut off. I didn’t like that at all. Talking about your child shouldn’t feel cold.
So I talked to someone else about her today, and I again I felt disconnected, distant, and maybe even cold.
I’ve been working really long days and then coming home and taking classes to help with my online presence and figuring out how to better this here blog. Maybe I’m just burnt out, but I’m going to do something tomorrow that I normally don’t do. I’m going to talk about Riley. I’m going to tell people how truly amazing she is because she deserves it.
She Deserves Better
Riley deserves a mother who is proud of all that she’s accomplishing and will accomplish. She deserves someone who will talk about her with pride because I am proud of the little girl that she is. She’s an amazing, beautiful and sweet little girl, and I need to be a better momma to her.
Some days are hard. That doesn’t mean I shouldn’t be proud and speak with love about this amazing, strong human. She deserves better than that, and I deserve a break from life so I can be better for her.
Until next time, my strong Momma’s…