Naylah is a daddy's girl. No doubt. She got that man wrapped in his fingers like no other. Everything is all about Naylah.
He has been away a lot due to work. He wasn't able to see Naylah working so hard and progresses made with her walker. So I update him daily,in all the small things she does, that for us is a step closer to the big achievements.
The other day, I send him a video of Naylah walking in her walker.
It stayed in his mind.
He thought it was wonderful, that she was doing so great.
Then, said life was unfair. Things are already so hard on her at such young age.
It broke his heart. That life was messed up.
He mentioned to his mom, who said she wasn't able to sleep because it got stuck in her head as well.
It felt heavy on his heart. In everyone's heart. It's his baby and seeing her in her walker broke his heart, just like mine did,that very first day, when I saw them putting the parts together, to then make her try it.
It's when you see those equipments such as walker, feeding tube, eye patch, glass (that we can't keep on), heart monitors,that you realize then, how things really are not easy on her.
Then it makes you think of the future.
When she will actually understand that it is hard for her to get to do things that other children do. When differences will actually be more noticeable to others.
This world is harsh. When they are small, people are so much more compasionate.
I thank to Naylah's siblings, David's children that do not see her any different, that motivates her to try so hard to play like they are playing. I thank her cousins, and little friends that actually sit down and entertain with her. They don't see any difference. Yet.
But what if she doesn't catch up and get to do all that they are doing?
There is nothing you can do.
I dream of it,and I hope for it. She has the motivation and that's my hope. I have faith in our baby, and I know she came to show us something amazing.
There is still that wish for things to be easier on her. Take away all the struggles, make her talk, make her walk without assistance of a walker.Make her heart stable without medicine to control the rate.
Realize she can do ANYTHING others can too.
Life, is so much harsher when you grow up, people look at you differently because you are "different" in their eyes.
Because you are not like them.
This is our new normal.
There is nothing I can do to change that.
I love her for who she is. I am proud of her daily. I would still change everything, if I could, just to make things easier for her. I don't love her any less because she has health issues, I love her even more because under my roof there is a true warrior. She shows me, that she fights her struggles with a smile. Because she is the happiest kid ever, she is surrounded by love. She would still be the flower I would of picked. Might be fragile but oh so powerful. My love and admiration for her grows every day bigger. She amazes me.
Yet, there is nothing I can do,but be behind her and make sure she knows she can achieve it all, because I know she has the willingness to do so.
Knowing that her daddy, that is always the "strong" one, and keeps telling me on daily basis that she will amaze us all, at her own time, got heart broken. Just got me sitting and thinking. Wishing for things to be a little easier. Made me feel less guilty about all my fears. Made me less scared of my sleepless nights. He has them too.
Made me wish to just be a mom. Not a nurse, a therapist, a schedule manager, someone always worried if her heart is okay, if her meds has been taken, count calories in her food, feed her through a machine. I never wanted to learn all that if I had a choice.
I Just wanted to be a mom. Worry just about fevers, tummy aches small things that can be cured so much easier.
Be able to enjoy long days at the park, not worry about her medicine and feeding tube schedule.
Be able to call anyone to watch over her, just because there is no special care needed.
I am thankful everyday, for the amazing aunt Jordyn that learned it all about Naylah. When she is with her, I don't worry about a thing, I know she is in good hands and knows just what to do. Thankful for her nurses, that from time to time switch a day shift to a night one,so I can enjoy night out with friends.
Dates with David, that are so important for a relationship.
If it wasn't for them, one of us would have to stay home,while the other gets to get out, be themselves and just for a few hours not to worry about anything.
Just take it all away, so she can enjoy the wonderful world of just being a kid.
No work four times a week with therapists. Drive to doctors severals times a month. No dietitian wondering how much she has been eating orally.
Just her to enjoy her childhood. Instead of knowing all about the medical world.
Knowing that her daddy, that told me since day one, when we first found out of her heart issues, when still in my belly that everything would be okay, got to wish things were easier on her. Put my heart at ease. I known I am not alone. I feel less guilty for wishing Naylah different things, for things to not be so hard for her.
Just to be a mommy.
This is our new normal, we will make the best out of it, and I know at her on pace she will get to do the big things I know she can do.
Meanwhile, we are taking our new normal one one step at a time.