The Early Signs of Development Delays
When our Daughter, Elyse, was 4 months old she was not hitting specific milestones that all my friend’s babies were hitting. Elyse did not have great arm strength and could not push her chest and arms up during belly time. She also was not rolling or even trying to roll. Her Pediatrician just kept telling me, "It would happen in her own time". At 6 months she was still not rolling, pushing her chest up, crawling, or putting any pressure on her legs. I was again told, "she would do it in her own time." In the back of my head, I had this Mom instinct telling me something was wrong but then would remind myself I am a first-time mom, and she was fine. When Elyse was about 8 months old, she finally sat unassisted and rolled in the same week! We were SO excited, and all those mom instinct feelings went away! She was going to be fine, I told myself over and over again. Just a few weeks later her Pediatrician called to tell me he was reviewing her growth charts and noticed her head circumference growing very slowly. He recommended that we see an Endocrinologist. The Endocrinologist ran several tests, but everything came back normal. I felt SO relieved but then we were referred to a neurologist due to her head circumference.
The Diagnosis
In August of 2020, we were told our sweet, perfect, little Elyse has a rare neurological condition called Microcephaly. A term we have never heard before. What is this? Why has this happened to her? Did I do something wrong during my pregnancy? Sitting in the room alone with my Daughter and hearing this was the most heartbreaking and indescribable feeling I've ever felt. Over the next year, Elyse was diagnosed with Hypotonia, Global Development Delays, Hypertonia, and Diplegic Cerebral Palsy. All these conditions cause Elyse to get extremely sick very often. She cannot fight off a simple cold as most toddlers can. Often a cold sends us to the ER or Urgent Care. Elyse has 10 different specialists that we see very often. We have not been able to find out why this has happened to our Daughter and we were told we most likely never will. Our lives have forever changed but not for the worse, for the better. We had no idea at this point how much Elyse would change our lives!
The Grief
You may think “what is this woman grieving about?” She did not lose her child. Grief is real when you find out your child has disabilities and you now know your child is not going to have the childhood you wanted for them. Your child may not start driving, she may not go to college, and she may never get married and have a family of her own. That is where the grief lies. Most days I tried to hide the sadness and pain I was feeling. I was very disconnected from my best friends even though they have been there for me since day 1. I was struggling at work and was hitting the verge of having extreme anxiety and depression. It was then that I learned it doesn’t matter when Elyse will crawl, walk, be potty trained, transition to a toddler bed, etc. What mattered most is that she has strong and loving parents and a great support system to surround her with positivity, love, and happiness.
The Present
Elyse is now 23 months old and is not standing unassisted, walking, talking, or doing a lot of other things typical toddlers her age are doing and I’ve learned that is okay! She is learning something new almost weekly and we celebrate every little inch stone she hits. We have the most loving and supportive family and friends and quite honestly, I am not sure what we would do without our 2 amazing grandmas, Grammy and Gram. Elyse has touched so many lives and I hope she continues to do so for years. She is the silliest, sassiest, and sweetest little girl and I am so blessed to be her Mom. Often times people tell me, “God only gives you what you can handle.” Although some people just don’t know what to say when they find out your child is special needs, God does not give you only what you can handle. I also often hear, “I don’t know how you do it.” Sometimes I am not even sure how to respond to this statement because quite honestly, I do not either. My husband and I both work very demanding full-time jobs while trying to juggle weekly therapies, weekly specialist appointments, and procedures. There isn’t anything we wouldn’t do for our Elyse. My goal is to make people more aware of disabilities that are not obvious or physical. I hope that we can help other families struggling with the grief of their non-typical child. The world is a better place with our special children living in it and I am so grateful that God has given us the chance to be parents to this resilient, strong little girl.
Follow Elyse's journey on Instagram @jen_macha
