We are a few days away from Naylah's O-N-E YEAR of wearing a feeding tube to help her grow, to let her sleep, to let her do things, she never experienced before!
I look back... Not in a million year, would I have thought that's what life had in store for me and my family, for HER.
That things would be so hard because everything about Naylah is so unknown. Because until today, there is no way of really knowing what's bothering her due to the fact she is non-verbal. We do not know what the results of her loss and duplicated chromosomes will do. Thing is,there will never be no cure either. We can't change genetics. It's not a disease that you treat. She is not sick. She is simply amazing.
Whatever life has plan for her, whatever the future holds, whatever hard obstacles we will encounter, we will make the best out of it.
Never would I have thought, I would learn so much about geneticists, cardiologists, gastroentologists,neurologists,ophtomologists, allergists, dermatologist,ENT, nutritionists, therapists, nurses, medical companies, board makers, the way insurance works, and oh gosh the list can keep on going.
I really didn't think that's what it was in store for us. If someone would of came to me and told me, this is how your life will be. I would of laughed. Seriously, This can't be it. This is the opposite of what I know. I am not prepared, I do not have the strength. This can't be my journey as a mother. This can't be the journey of my child.
Well, that's what life had in store for us. There is nothing I can do to change that, It's either you ENJOY it fully this experience and learn how to grow with every little new thing you will learn about it, or you morn forever about the life you wish you would of had instead. It is not that terrible. It is not easy I admit that, but it's not awful,it's actually far from being awful. Mourning for something you 'lost' won't benefit anyone... Let whatever be, BE, is not what we opted for.
A year ago, everything about a feeding tube was very unknown to me, to David, to our family, to our friends. When Naylah Gi recommended a tube and gave all the pro's for it, We didn't hesitate a second, we knew, that this was the best option for our daughter. They gave us hope for a better life for our child. It had been a year, that she had the same routine as a newborn, someone that had the need to eat every 2-3 hours, sometimes a two ounce bottles could take hours to be finished and at that time she wasn't a newborn anymore. Swallow studies had shown she was aspirating ( liquids going to lungs), she couldn't coordinate chewing/swallowing.
We did not hesitate a second. We went for it, all her specialists thought it was the best option, that it wasn't her heart wearing her off, it was her genetics and all the unknown issues that came with it.
The progresses, she has made since this feeding tube was placed in her tummy, is beyond impressive. The energy she finally has, the strength in her muscles, the ability to sleep... FINALLY. I had miss the word sleep, I couldn't remember what it felt like. I remember nights I was so tired, that I would just cry of exhaustion, of lack of options. ( by trying all the wonderful mommy's advices. Cereal in milk, more caloric food). Still no energy to finish a small 4 oz bottle at age of one. Showed us it was for better. Her life improved.
Her life changed and ours too. We could finally BREATH.
I still wonder from time to time, what if we didn't place a tube? How much orally would she be eating? How far would she be today? How much would she be able to eat?
I wonder if she would be able to eat a whole meal by mouth without struggling? I guess we are never happy with what we have.
Today is not the day of "ifs", is the day to remember the progresses made, and how far we came.
The things she CAN do, whether of what she CAN'T.
She can crawl like no other that's for sure.
She is finally reaching A growth curve. Something totally awesome.
She can sign a few words. She will learn new ones.
SHE SLEEPS. Best thing ever and we sleep too. Second Best thing EVER.
She can light up a room with her smile.
She can make you extremely proud of her own achievements. She make sure to look into your eyes and see that you will clap for what she accomplished.
She WILL walk!!! I can see that is coming closer and closer,the day she will take her very own first steps because she is so determinated for it, and I can tell you, the day she does it, we will cry of happy tears.
She can tell you a whole lot with her smile and clapping. She can see how happy we are with all she does. At the end, it is all that it matters. She might have " millions of unknow issues", but when you stop and stare at her, she is the happiest kid on earth.
She "battles" every day with her issues. With her frustration to not be able to communicate, to her hard times eating a whole meal without no struggles, to catch up with the kids her age, but oh man, she never fails to smile. IT IS ALL THAT it matters. Her happiness and knowing we are behind her 100%.
I am done trying to feel bad that she is not doing what she is suppose to be doing. Those days are over. At least, I try my best to not let them hunt me. To be proud of what she accomplished and cherish those moments. Forget the cant's.
And it ease my mind to know, so many people admire her.
I can't tell how much longer, she will need her feeding tube to help her grow for. I know one thing. Naylah do things her own way, the day she is ready to not need it anymore she will make sure to let us know. She has been all along, doing things at her own pace and I am sure getting rid of the tube is one of them.
So today, for her one happy year of a feeding tube let's celebrate the fact she has reached a growing curve, she can crawl, she can sleep through the night, she has energy to play, she has gain muscle strength to crawl all over and that she has motivation for so much more. It is all matter of time. I know she has a lot of great surprises in store for all of us. Just stick around.
Let's forget the bad days and leave them behind. Today let's celebrate.
Welcome to Holland
By: Emily Perl Kingsley
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo. David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But your friends are busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland.
This can't be truer. Italy is not what all there is. Holland can be as fancy and as beautiful If you take the time to admire it's beauty.