What Being a Special Needs Parent Means to Me
By the age of 25 I started telling my friends I wanted to be a mom. That’s all I wanted to be — a mom and a wife. I wanted to build a family of my own.
I got lucky. That year I was expecting my first child.
The baby planning, the morning sicknesses, the baby bump growing, the “What to Expect When You’re Expecting” book. All of it so exciting — first kicks, seeing your child via ultrasound. All so magical.
Then, suddenly at the 20-week checkup, your child has a heart defect. Your world shatters in a way.
The worries of a first-time mom start, and you don’t even have that child in your arms yet.
You get mentally and physically prepared because chances are after birth, your child will go with surgeons and have an operation right away — before you even get to hold her.
Things didn’t turn out that way, luckily, for us and for her. At the end she was born pink and full of life. I got to hold her, stare and admire all her tiny features.
That’s when all the real worrying started — having to watch your child not thrive, not meet all the milestones. You watch her struggle to finish a tiny bottle. Having a diagnosis at 4 months made it harder than ever. My world shattered; all I knew about children suddenly became so uncertain.
My journey of a special need parent started that day.
Before that, she was just a typical child with a heart defect — something that could be fixed with surgery. But you can’t fix genetics, you can’t do surgery and put all the chromosomes where they belong, take the extra ones out and put the missing ones there.
My child has trisomy 5q. I can’t change that. It’s rare, and most likely you’ve never heard of it. I didn’t even know it existed.
So, what does special need parenting means to me?
It’s like a roller coaster with ups and downs. It’s something that gives you butterflies in your stomach but at the same time, boosts your adrenaline. It’s somewhat scary, but you’re not afraid to do it again after the first ride.
It’s like a snow globe that you suddenly shake, and it all becomes a mess until everything settles down again, and it all becomes clear and peaceful, and it looks so perfect.
It’s like taking a trip to a destination of your choice and suddenly finding yourself somewhere you’ve never heard of, but you come to find out that even if it’s unknown and you might get lost along the way, there’s magic. It can be as beautiful as the destination you wanted to be at in the first place.
It’s like the weather. There are plenty of storms and sunny days. The storms sometimes make you shiver, but the sunny days warms you with joy and give you back the boost you needed.
It’s finding yourself crying because you are mentally and physically exhausted.
It’s finding yourself smiling because the smallest thing your child does is a big accomplishment.
It’s becoming your child’s advocates and fighting for her rights.
Special needs parenting to me is giving up on what once was a living room and turning it into a play room for therapy so she has the space she needs. It’s making sure you are giving your child the happiest of lives.
It’s putting your needs last because you have someone that needs you more.
It’s going to bed at night thinking, “What else can I do?” and waking with the same thoughts.
It’s having to work extra hard for your marriage because you and your significant other don’t get to spend the same quality time you once did. And because every little thing turns into an argument. It’s finding in-between time for each other. It’s being stronger together. It’s trying to beat the odds of a high divorce rate when you have a special needs child because the stress can take over. It’s becoming a team.
It’s giving up a career because you have someone who needs you more than a job. It’s living off one income.
It’s staring at the calendar by the fridge and realizing how busy your child is. It’s filled with with therapies and doctor appointments. Trying to coordinate all of it together can become so overwhelming. Between that, you wonder when you will find time to just relax.
Special needs parenting to me is unconditional love and caring for someone before caring for yourself.
It is being available for your child 24/7.
It’s giving all you’ve got — heart and soul.
It’s being grateful that despite all your child went through, she has the biggest smile on her face. Always.
It’s knowing she’s happy despite the difficult journey she may have before her. It’s knowing that she knows you are there for her and she trusts you. She knows you are making the best choices for her.
It’s having less people to count on because you can’t trust everyone with your child.
It’s finding yourself crying out of nowhere because you are not sure if you are doing this whole thing right.
It’s being exhausted but still keeping a smile on your face.
It’s always wondering what’s bothering your child because she is nonverbal. It breaks your heart.
But it is also almost forgetting that she is nonverbal because you find yourself communicating with gesture and understanding each other. It’s her love that is worth a thousand words.
Special need parenting is rewarding.
You don’t judge people.
You don’t notice differences anymore.
You find yourself proud of how far your child has come.
You find yourself giving your child a diagnosis before even getting to the doctor, and often you are right.
You learn about medical necessities you’d never heard of before. You become a nurse without a degree.
It’s seeing your child go through a heart surgery, feeding tube placement, hospital stays, countless blood work, MRIs, swallow studies, heart monitors, medications and thinking it’s all unfair. But you’re also thankful for her being in such good hands.
It’s knowing you love her more than life itself.
It’s watching her grow, learn, become her own little person and forgetting all about the bad days.
It’s lying down on the floor and just cuddling and giggling with her.
It’s doing the impossible to make her succeed.
It’s organizing play dates with typical children so she can get motivated to do things they are doing.
It’s doing everything you can for your child, letting her know you are there and she is loved.
It’s living life normally.
It’s celebrating all milestones, all surgeries dates, awareness days that she is a part of and showing how proud you are of her.
It’s knowing she is so much stronger than I ever will be.
It’s her showing me that life should be treasured — that not everything comes easily.
It’s learning how to be patient and just breath.
It’s spending countless hours on the phone with insurance, supply companies, nurses and therapists.
Special needs parenting is knowing you are not alone. People before me went through it, and there will be many parents after me. I have found the best source of support with total strangers and parents who know what it’s like. With them, I have no fear of asking weird questions. It’s knowing they won’t judge you because they know how you feel. It’s finding yourself sharing with them your deepest fears.
Special need parenting is like any other type of parenting. It’s being there for your child and loving them no matter what and becoming the best person you can be for them.
It’s giving 10,000 percent and doing it all over again without a second thought. It’s knowing that you’re being the best parent you can be.
I love my child, with special needs or without. She is my hero. In my eyes she is a warrior with an extreme strength.