I got lucky, by age of 25, I was expecting my first child.
All so magical.
The worries of a first time mom starts and you don't even have that child in your arms yet.
You get mentally and physically prepared that chances are at birth without even being able to hold your unborn child, she will go with surgeons and have to operate right away.
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, admire all her tiny features.
5 days in the NICU later, I got to bring my baby home with us, where she belonged.
That's when really all the worrying started. Watching your child not thrive, not meeting all the milestones needed.
Watch her struggling to finish a tiny bottle, and knowing the heart wasn't the cause to all the issues.
Having a diagnoses at 4 months made it harder than ever. My world really 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 a heart surgery.
You can't fix genetics, you can't do a 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 never heard of it. I didn't even know it existed until I had my own.
So, what does special need parenting means to me?
It's like a roller coaster with ups and downs; something that gives you butterfly in your stomach but at the same time it boost your adrenaline, somewhat scary but not afraid to do it again after the first ride.
It's like a snow globe that you suddenly shaken 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 never heard of, but come to find out that even if it's unknown and you might get lost along the way, there is magic and can be as beautiful as the destination you wanted to be at the first place.
It's like the weather, there is plenty of storms and sunny days. The storms sometimes can makes you shiver but the sunny days warms you of 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 it's a big accomplishment.
It's becoming your child advocates and fighting for her rights.
Is making sure you are giving your child the happiest of lives.
It's going to bed at night thinking what else can you do more, and waking with the same thoughts.
Is having to work extra hard for your marriage because you and your significant other don't get to spend the same quality time as you once did, because every little thing turns into arguments.
It's finding in between time for each other. It is being stronger together. It is trying to beat the odds of high divorce rate when you have a special need child because the stress can take over. It is becoming a team.
It's giving up a career because you have someone who needs you more than a job. Is living off of one income.
It's starring at the calendar by the fridge and realizing how busy your child is. It's filled up with therapies and doctors appointments and trying to coordinate all of it together can become so overwhelming. Between that you wonder when you will find time to just relax.
Special need parenting to me is unconditional love and caring for someone before yourself.
It is being available for your child 24/7.
It's giving all you got, heart and soul.
It's being grateful that despite all your child went through she has the biggest smile on her face... ALWAYS.
Is knowing she is HAPPY despite the difficult journey she may have. Is knowing that she knows you are there for her and she trusts you, and knows you are making the best choices for her.
It's finding yourself crying out of nowhere because you are not sure if you are doing this whole thing right.
Is being exhausted but still keeping a smile on your face.
Is always wondering what's bothering your child because she is non-verbal and it breaks your heart.
but it is almost forgetting that she is non-verbal because you find yourself communicating with gesture and understanding each other. Is her love that is worth a thousand words.
Special need parenting is rewarding;
You don't judge people.
You don't notice differences any longer.
You find yourself proud of how far your child have 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 never heard of. You become a nurse without a degree.
It's seeing my child go through a heart surgery, feeding tube placement,hospital stays,countless blood work, MRI's,swallow studies, heart monitors, medicines and thinking it's all unfair, but also gets you thankful for her being in such good hands.
It's knowing I love her more than life itself.
Is watching her grow, learn, becoming her own little person and forget all about the bad days.
Is laying down on the floor and just cuddles and giggles with her.
Is doing your possible and impossible to make her succeed.
It's organizing play dates with typical children so she can get motivate to do things they are doing.
It's doing everything you can for your child and letting them know you are there and she is loved.
Is living life normally and making sure it's the happiest life she can have.
Is celebrating all milestones, all surgeries dates, awareness days that she is part of and showing how proud you are of her.
Is knowing she is so much stronger than I ever will be.
It is her showing me that life should be treasured, that not everything comes easily.
It is learning how to be patient and just breath.
Special 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, with parents that knows what is is like, where I have no fear of asking weird questions.
Is knowing they won't judge you because they know how I feel.
Is finding myself sharing with them my deepest fears.
Special need parenting is like any other type of parenting. It is being there for your child and loving them no matter what and becoming the best person you can be for them.
It's giving yourself 10000% and do it all over again without second thoughts.
I would do it again in a heartbeat. No hesitation ever.
I know I'm being the best parent I can be, special parenting or not.
I love my child with needs or without.
She is my hero, in my eyes she is a warrior with an extreme strength.
She will move mountains.