I tend to be a "hope for the best, but prepare for the worst" kind of a girl.
I might have imagined what it would be like to be in a situation or wondered how I would respond should difficulties arise; however, I was not prepared for the magnitude of having a child who isn't "normal."
I love my Baby M. Oh, my goodness, I love her! She is a sweet little girl who has always loved to snuggle. We spent our first 4 days together in the hospital doing just that-snuggling. It was delightful. My Little A was not a snuggly baby. She was too busy exploring the world to spend time snuggling with her mom. That made Baby M's snuggles even more welcome.
Then her pediatrician suggested she had a heart murmur. It resolved. Then a click in her hip. Given my time in the medical field, I was aware of what that meant. Hip dysplasia. I pictured all of the interventions needed to correct it. I was horrified to say the least, though someone with my background should not have been, right? Maybe. But this is my baby we're talking about.
We went for an ultrasound in another city that same day. The drive was long. Really long. Too long. I had a different kind of butterflies that day than I'd ever had before. I was scared. It could've been worse and I knew that; however, this was bad enough for me.
The ultrasound on her hips was normal. Hallelujah!!! I quickly gave the credit to a loving Heavenly Father not only for an apparent answer to a worried set of parents' prayers, but for the calm he offered through the process. Peace to keep going. Calm during the ultrasound.
I held my newborn baby closer after that.
We thought we were out of the woods. Now she was going to grow and develop as anticipated. And so time went on. But just after she turned 6 months, she struggled to roll over. She had a hard time not rolling from her stomach to her back without having her arm outstretched and under her back (OUCH!) once she rolled. Her joints felt loose, so we avoided pulling on her hands and arms for fear of dislocating her elbow or shoulder. Her snuggles continued and I thoroughly enjoyed them.
She was always such a mellow baby. Maybe she just didn't want to move? She had a big sister who brought toys to her, after all. Mom and Dad were more than happy to carry her. Perhaps we were enabling her slow desire to become mobile.
Her pediatrician was in favor of waiting. She seemed to be developing appropriately in every aspect except for crawling. No biggy. I expressed my concerns and they were soothed.
Then she turned one. Still no crawling. She'd figured out how to squirm a bit and scoot, but still no real mobility. Her doctor here is the doctor I worked with prior to our move. He's wonderful and encouraged us to do what we felt was right and he supported an evaluation to see where she was at. We started physical therapy. She's making progress now. And we're adding occupational therapy to assist with some other delays.
Something happened when the PT eval was finished and they told me my baby was 12 months old but only 6-8 months for development. My heart fell in that instant. Yesterday, I got the OT eval and read it in its entirety. 26 weeks of therapy. My heart fell again.
The good news: OT eval shows she's at 24 months development at 12 months. Her pincher grip and fine motor skills are all in tact and even advanced!
"She's not perfect. She's not going to sail through development. She's not going to be 'normal'. Or is she? What is normal anyway? How do I respond to all of this? What did I do wrong? What did I miss? Why didn't I do something sooner, push her pediatrician harder for help? What kind of mother allows her child to become so delayed before fighting harder?"
And then the answer came. "You are her mother. You are the mother she needs. She is your daughter. You have done nothing wrong nor have you caused this difficulty. This is part of her growth. It might take some extra effort on your part, but you will do it gladly because you are that kind of a mother. She's going to be fine and so are you."
She sports orthotics on her feet under her shoes. She can't wear stylish shoes anymore because of the bulk of the support needed for her legs to assist her with standing. She's starting to bear weight and take some steps with help. She's got a better grip. Her joints are not as loose and her arms are getting stronger. She can hold her head up while on her tummy a little longer now. It's getting more difficult for her to roll over onto her arm which makes me happy.
Her physical difficulties has given me a glimpse of what it feels like to have a child who isn't doing things we'd expect them to do. A child who isn't the same as the majority of their peers. A child who isn't healthy by definition. A child who isn't developing correctly.
A child who isn't.....
But let me tell you what my child is. She is happy. She is genuine. When she hugs me and pats my back after we finish with therapy, I know she is encouraging me. She is helping me to see the best in motherhood. She is showing me what it means to take adversity with grace. She is so happy to see her friends with cerebral palsy, speech delays, and other disabilities every single time we enter the building. She is interacting with children who don't typically interact with others. She is eliciting smiles and happiness from her friends. She is bringing joy to many. She is a miracle. She is inspiring. She is strong. She is resilient. She is brave.
She is our girl. We're the lucky ones.
She loves her physical therapist. They've become pretty good friends. Look at this wonderful crawling form! Her fingers are less hyper-extended than they've been and she's keeping her knees and hips aligned! She maintained her balance and was able to reach for a toy a couple of times. Yay, Baby M!
Some things are really hard. She needs reassurance and encouragement along the way. She's doing lots of hard things. The cookies make it worth it.
Little A is a wonderful helper and support for her sister. We do a lot of cheering and clapping. Why? Because we're family and we're in this together.
Originally written: 1/28/2016