It's been 3 years, since we were standing in a front of the geneticist, her giving us a diagnosis we never heard of. Trisomy 5q. All sounded so unreal. I kept repeating that word in my head. Trisomy. It was nothing i had Imagined to hear. Then again what exactly did I want to hear? Until today I am unsure. What she has, has no cure and most importantly we wouldn't know on how it would impact her life.
I remember, my head spinning, my heart racing, staring at her, tear after tear and getting handed by the specialist one internet paper as an explanation of her diagnosis while she had a copy in one hand and was reading it out loud to us.
My daughter diagnosis came out straight from a printer. One article was found.
Stepping out of the office, I was at lost. Where do I go from here? Where do I go from your child has heart issues to your child has a rare trisomy? How do I tell others? Do I have to tell others? Trisomy means delay, means people not accepting differences, trisomy means many health issues. I could only see the bad, while holding such a beautiful human being in my arms. I couldn't imagine the worst but had to.
Specially when you hear, she may not walk, talk, she may be severely delayed, I didn't know what to expect. Then the fight with insurance started to get services for specialists to help our little one improve. It wasn't anymore just a parents job, we had to have a team.
Our home was invaded by strangers, strangers that just like me wanted my little one to succeed. Strangers that until today I can count on when in doubt of something.
This month of September marks our 3 years with an actual diagnosis.
That little girl who wasn't going to walk by some Drs beliefs is now trying to run
That little girl who was wakening at all hours to eat just like a newborn on her first years of life now gets 12 hours of sleep, and today I can be thankful for her feeding tube, when I had doubted if we had made the right choice and if by placing it, if she would ever eat orally.
I once was ashamed to tell her story, afraid that people wouldn't get it. Afraid of her differences and acceptance from others.
Today I can tell her story without any hesitation, today I am trying to make a difference for the next parent that gets the same diagnosis as us so they don't ever feel lost.
Today you google trisomy 5q, you won't find just one article, you will find several ones.
This because of those that believes our story is worth sharing, those who believe that being different is beautiful.
I'll be forever thankful to amazing organizations that believe in our children differences and do everything for those kiddos and the world to know. Forever thankful to the opportunities of sharing our story to others.
I'll be forever thankful to amazing photographers for capturing my little ones magic. Taking their time to gift us with their talents.
I'll be forever thankful to those specialists that has believed in my child and made sure her needs were met.
Most importantly I'll be always thankful for my better half, Naylahs dad for allowing me to stay home and focus on our child. I couldn't have done without him.
Unless you don't know and have lived it, is hard to picture how difficult it is to hand your child into surgeons arms, spend nights in hospital while holding your little ones hand and praying that things will be okay.
Unless you have lived it, you can't imagine how hard is for some people to see your child the way you see your child. Simply amazing. Despite all the health issues, the delay, the fights to eat food orally or to get a sound from her, she is happy and truly today I know this is all it matters. Knowing she is happy.
3 years ago, I couldn't see all that, I had imagined the worst.
Today, I make sure she is heard, I am her voice until she can be her own.
I am her nurse, her therapists when they are off duty, agenda keeper, tear dryer, her arms she comes to when needed, the one who protects her and make sure she knows no matter what difficulties she may have her way, things will be okay, I am her mother most importantly and couldn't ask for a better child to guide me in motherhood.
Today, I can't picture her any differently than her own little self.
It would be a lie if I told you my heart doesn't ache when a typical 3 years old come to me and tell me stories when she isn't able to yet. But in her own little way, she tells me what she wants and I can only but be thankful for that. I know her favorite songs, I know what she wants by a simple gesture, I know what makes her happy, you can't beat that.
I wish I had known 3 years ago when I left that office in tears that things would be okay, the road will be long, she would go through more than most people go through in a lifetime but that our lives with a miracle would be pure joy, that I would be proud of all she had accomplished, to share her amazing story, I wish I could of seen that far ahead that day.
That day, I apologized for her diagnosis, I apologized for all the things she may or may not be able to accomplish on her own. Today, I just want to apologize for ever doubting her, because she isn't defined by her trisomy 5q, she is just who she was meant to be all along.
Happy 3 years of diagnosis baby girl, my life is just way better with you in it. You have thought me way more than I ever thought you,all along you were my best teacher!