Finding out that your child has a disability is heartbreaking and can leave you feeling completely lost. It’s not something that I’ve personally had to face as a mother, but it’s near and dear to my heart nonetheless. My younger sister has several disabilities, most notably epilepsy and cerebral palsy, as well as brain damage from having several strokes throughout her life and possibly in the womb. We were told countless times that she would never walk, never talk and at one point, that she wouldn’t live past a few weeks old, and she has surprised us all! She just turned 19 this past May, and she is such a beautiful soul! Through loads of physical therapy, surgeries and a positive attitude, she has blossomed into a wonderful young woman whose abilities have completely surpassed our expectations.
Recently I came across a fellow blogger named Jacqueline, (her blog is www.babyhenrylikes.com) who has a daughter with hypotonia and possibly congenital myopathy. I stumbled on her post, My Daughter The Superheroine and commented on the importance of remaining optimistic through the pain their family faces, as her daughter will constantly surprise her. This post touched me in many ways, and brought back memories of my mother remaining strong through everything our family has gone through in regards to my sister’s disabilities. I wanted to share her story with the hope that other moms going through similar situations may be uplifted and be reminded that they’re not alone.
Read her story below:
Thanks, Victoria! I’m so honored to be able to share a little part of my story with your readers! Victoria and I have a few things in common–mainly motherhood and our love for DIY’s! But as it turns out, we also have another thing in common; we both have loved ones that dealt with illnesses and obstacles as little ones, only to persevere and prove everyone wrong. My daughter Evangeline is 14 months old. When she was four months old, her pediatrician noticed she was “floppy” aka her muscles were soft and she was very flexible. At nine months old, she was diagnosed with hypotonia (or low muscle tone) and started physical therapy to help her get on track (she wasn’t reaching her milestones). At a year old she went to see a neuromuscular specialist to see why she was born with hypotonia, i.e. was there something wrong with her nerves or was it in her DNA? This doctor gave me a very bleak prognosis for my daughter. To say that I cried my eyes out is an understatement. I spent the WHOLE day in tears. I felt defeated. I was sad, hurt, hopeless. There was a possibility she would never walk and this saddened me so much. I wanted her to be happy and not suffer. I know this is impossible since we all suffer at one point or another, but I just couldn’t stomach the thought. If you knew her, you’d understand. From the very moment she was born she’s been an awesome baby. I thought my son was a piece of cake as a baby, my daughter is the whole cake! She loved to sleep and slept on her own as soon as I would put her down. And she’d sleep through the night early on. She is truly a blessing to me. I have a happy baby and I wanted her to continue being happy. The idea of her having to endure tests the rest of her life was so heartbreaking to me. Just drawing blood from her vein made me cry! I didn’t want to see her in pain! But after that visit, my husband told me to be positive. He knew early on that the doctor was wrong. We had a very smart, social little girl here. I told him I would be a fighter the next day, but that day I was done.
The next day, my whole outlook changed. In my mind, I knew she could prove everyone wrong. I just knew it. I signed her up for programs that would help her and we worked vigorously with physical therapy. One week after her specialist visit, she started walking using the crib’s railing. She’d never done this before and prior to this when we would try to walk her, she didn’t know how to position her feet or what the process of walking was like. She would just stay still. Now she was walking! Since then we’ve been blessed with more great achievements. I swear, when my older son (he’s 3 now) reached his milestones we were thrilled, but when my daughter reaches them our joy is laced with tears of happiness. I can see how hard she tries to accomplish these goals and it makes me so happy and proud of her. I can only imagine this is what Victoria and her family felt when her sister accomplished her milestones and proved her naysayers wrong. It’s such a beautiful feeling inside your core; it reaches into your soul–real joy. Right now Evangeline is on par with most kids her age: she’s crawling, sitting, pulling herself to standing, and walking (supported). Her next goal is to walk without assistance. I am so thankful to everyone who has helped her and worried about her. Feeling defeated is no longer an option for me. I only have hope for her and her future. She’s shown us and everyone else who knows her, that she can do this! She can reach her goals! Thank you for taking some time out of your day to read my daughter’s story. If you’d like to learn more about her or to read a more-detailed post about her hypotonia diagnosis, you can visit my website at Baby Henry Likes. See you there!
I’m so thrilled for Jacqueline and her family, and I know Evangeline has so much ahead of her. Living with a disabled family member is extremely difficult and emotional, but staying strong and having faith is crucial. Remaining positive doesn’t always seem possible, and some days will be harder than others. But you will come to find that your child can surprise you in so many ways, making it all worth while.
Do you have a child or family member with disabilities? Tell us your story below!