Always on my Mind

On June 29, 2017 By LeeIn Down Syndrome, HannahLeave a comment

As I packed for a weekend at the beach with Hannah and some friends I out-of-nowhere remembered something I read on a blog a while ago: the writer mom forgot her son had Down syndrome. I can’t say that has ever happened to me. Even for a short trip to the beach I’m reminded of the extra help and supervision my child will need. That extra chromosome plays a part in every activity every day, maybe not a leading role, but it’s always on my mind.

Every playdate requires extra planning. Childrens’ museums are usually stroller-free zones and my worst nightmare. I can’t assume Hannah will want to walk and I can’t carry her and the diaper bag all day. Parks and playgrounds are okay if they’re geared toward little kids and we’re the only ones there. At the last playground playdate Hannah was too nervous with the older kids running around so we ended up watching from the stroller.

There’s a reminder every time I look at the calendar. Another appointment to go to, another appointment to make. Hannah’s schedule is busier than ours and we often require extra help from the grandparents. I can’t imagine doing it all without them. We’re also lucky our employers are so understanding. I feel like I was barely at work last month because Hannah had so many 3 and 6 month follow ups.

It’s even tough to swap kid stories with friends and coworkers sometimes. I don’t know what it’s like to have a baby that doesn’t sleep all night. They don’t know what it’s like to force your baby to take a bottle in the middle of the night. I don’t know what it’s like to just watch a child develop on their own. They don’t know what it’s like to share small milestones with therapists and specialists. Yes, our kids all throw tantrums. Yes, our kids all have their quirks. Yes, our kids all develop on their on schedule. But you can’t understand what it’s like to be a special needs parent until you’re knee deep in it.

They’ll also never understand how amazing it is. How excruciatingly beautiful life is with Hannah. Every day she shows us what Down syndrome really is. It’s not just the doctors, the therapy, the delays, the work. It’s patience and perseverance. It’s singing and dancing in the bathtub, the car seat, the grocery store. It’s watching her reaction when we see one of her daycare friends at Target or a summer concert. It’s the twenty minutes she needs to say goodbye and give hugs before we can leave. It’s the pride and self-praise when she busts out a new skill or repeats a good behavior. It’s the magic in her eyes and the joy in every smile.

Hannah’s 2nd Heart Day!

On June 13, 2017 By LeeIn heartLeave a comment

Last night we celebrated two years of health. Two years of thriving. We’ll never forget the team of doctors and nurses that saved our little girl and the friends and family who kept us from falling apart.

We All Fall Down

On June 9, 2017June 9, 2017 By LeeIn Hannah1 Comment

There are days that I fly up and down the wooden stairs in our house. Sometimes I pause and think how awful it would be if I fell and was seriously injured while Hannah was home. How long would it be before someone would find me? Should we install a panic button so Hannah can call for help? Would the dog even care? Even worse is the fear of falling while holding Hannah.

Unfortunately, last night this fear came true. Pete, his brother, and I just finished an awesome evening hike. Pete took the dog home to wash off the swamp water she walked through and I went to his parents’ house to pick up Hannah. I chatted with Grandma for a bit, got Hannah from the crib, and headed down the stairs.

Next thing I know, Hannah and I are bouncing down the steps. When we landed at the bottom Pete’s mom took Hannah so I could stand up and I saw the blood all over my shoulder where I had been holding Hannah. I grabbed my girl and rushed her into the bathroom. It looked like she bit a hole through lip. Grandma grabbed some washcloths, I popped Hannah in the carseat, and we rushed to the hospital. Hannah went between crying, screaming, and sleeping during the longest 6 mile drive of my life.

The women at the registration desk were incredibly efficient, and then everyone else seemed to be a heck of a lot less worried than Grandma and I were. It was obviously a busy night but in my mind nothing was as important as my little girl – who now looked like a victim in a horror movie. Hannah went in and out of sleep, with bouts of screaming whenever a nurse or doctor tried to touch her. She finally calmed down after a Ketamine injection, had a CT scan (which came back fine), and then the PA stitched her lip up (with help from 2 more doses of Ketamine). The sweetest nurse cleaned all the blood off of Hannah’s face and hair and our little girl was finally recognizable again.

Throughout this whole ordeal I felt like the world’s worst mother. It was horrifying – way worse than the recovery days after Hannah’s heart surgery. This was my fault. I was furious at myself. If I had left my shoes on after the hike I wouldn’t have slipped. If I hadn’t been in such a rush to get home to eat leftover pizza I wouldn’t have slipped. After everything this kid has been through the last thing she needed was a late night trip to the ER thanks to her clumsy mother.

Then, for some reason, I got irrationally mad at the Universe and Down syndrome. I was mad that I understood every word the doctor was saying to me about Hannah’s treatment plan. I was mad that he asked me if I worked in the medical field – or if I just learned so much from being Hannah’s mom. I was mad that I knew people with Down syndrome burn through sedatives quickly and that I forgot to tell the PA. I was mad that people ever say “everything happens for a reason” because there’s no good reason for this to happen. I was mad that this awful, but normal, childhood accident isn’t Hannah’s first experience with sedatives and heart rate and oxygen monitors. I was mad that, once again, wires were snaking out of my baby’s jammies and we were cuddled up in a small hospital bed.

Hannah woke up this morning like nothing happened. We went to her year end show at daycare, picked up her precautionary antibiotics, then headed to the pediatrician. The doctor said the stitches look great but Hannah needs to take it easy for a few days. We also need to visit the dentist to see if her top teeth were damaged. I’m rockin’ a fractured sacrum and a wicked headache. But, we’ll all be okay.