A couple days ago, we ran errands with David, Naylah and I . While at the cashier, waiting in line, Naylah kept on wiggling and making a whole bunch of sounds. We got to our turn to pay, the cashier than asked me boldly if my child had Down syndrome?
While the people behind me in line, just looked and listened to my answer.
It took me a deep breath to confidently say "no". Then my heart ached and replied, "but yes she does have other issues."
She politely proceeded and continued scanning our items .
I left, with a heavy heart. People now notice more Naylah differences.
When I would wish they didn't.
The more she will grow, the fact is, the more people will notice. Their looks just wondering what is wrong with my child ... I don't know where to start, or even if I should give an explanation. Do I start with her heart issues, with her trisomy, with her patch, with her tube, with her delays?
Or simply do I say she has special needs? Something I don't want to give a label to, because to me, she is who she is suppose to be.
Do I say she has trisomy 5q, to then explain what it is, because no one never heard of it?
Do I have to explain her struggles every time someone stares? When I see their wondering looks? Do I need to make a speech, memorize it by heart, so it comes out of my mouth, with more confidence?
"This is Naylah, she has trisomy 5q, a rare genetic disorder, along with that she has heart problems, can't walk or talk yet, requires patching to correct her eye, glasses, needs a feeding tube to grow, requires a special equipment to train her to learn how to walk, and has delays in all areas you can think of. Yes,she is two, she is very small. "
So I don't have to hear the what's wrong with her over and over again ? Or just have people assume to then give her a diagnosis when she alone, have plenty of her own. No need to add more to it.
She has plenty already.
When Naylah was born all her differences didn't come with a manual.( wouldn't be nice if all children did?)
I am slowly learning how to deal with questions and stares. It's only been a year and a half that we learned of her trisomy. And everyday, I'm learning more of how she functions and all about what trisomy 5q is. She is the only one we know of with it. I can't compare her to anyone but herself.
I can't tell or estimate how she will be 5 years from now. If she will require all this growing older. I don't know when her feeding tube will be removed. Or if she will ever be able to come out of heart medicine, if she will go to a regular classroom, have other surgeries, or when she will walk on her own or talk without needing her board or sign language.
Questions such; " she eats by mouth so why does she have a tube?", "when will they remove it, she has had it for awhile now?", "is she walking/talking yet?"
This type of questions even come from close people to us.
Truth is, our "manual" is written daily. I am learning new things about her Every day. I sure hope someday, I will be in a place to help another parent if their child happens to have it. Educate others that are interested in it.
I am no super mom, that comes out with the right answer when those questions comes up. I still need time to proceed on how to answer them. And it surely isn't true that "special needs children" are given to "special parents" that have what it takes to raise a child with needs. I wasn't chosen because I had what it takes. Because children with issues are only given to the ones that knows best. I do not know best, I take it day by day. I can't plan ahead, I do not know what's ahead of us actually. It's all on you to make the best out of it and do all you can to help your child out. I am no stronger than the parents that have typical children. I wasn't given super powers when I learned about my child chromosome abnormalities. If I was, I would of used my super powers to fix all her struggles. I don't have extra strength, I am no future teller. I just learned to accept her differences, learned how to do things differently. i am sure you would do the exact same if it was your child. love is an amazing bond. I am fine with all that, yet, I am still learning on how to answer the unexpected questions without having a nod in my stomach. I surely hoped I could answer right away without even thinking about it, truth is I don't even know where to start.
She is simply amazing the way she is,and that is what's the beauty of being different is all about.
I was deeply in love with her since that first Obygyn appointment that I heard her heart beat. My love for her than just grew stronger day by day. Differences or not. I am positive with time my answers will come out more confidently, it's one thing close relatives asking them, you know how to answer to them, you have the time to actually explain and tell how you really feel. It's just another, a complete stranger staring at your child and wondering what's wrong. Some looks are plain curiosity, some are really interested ones,others are plain pity. No super mom here. My heart breaks. Just a mom wishing to take the looks away from a child that you love above and beyond. Someone you want to protect above all. While she doesn't notice that they are looking,you surely do. That's when you wish you could have the super powers for them to not notice, to just go away. Just to see what I simply see the beauty of my child, her beauty of being different.