I wonder what her voice sounds like. I wonder what the words will sound like when they finally roll off her tongue.
I wonder how I am going to feel when I hear her say my name.
I wonder how my heart will explode when she looks at me and tells me exactly what she needs and wants.
If you follow our story, you know that amazing things have been happening for us. So many beautiful, wonderful, special experiences and opportunities. Hailey’s story and my life as a caregiver were spotlighted on “The Today’s Show during the Hoda and Jenna Hour.”
I also had the opportunity to speak with medical professionals at Rutgers University about the parent journey and how medical professionals and parents can partner together. The best part of my parent interview/discussion was, for the first time, I told our story, and there were no tears. Does this mean I am in the acceptance stage of the grieving process? I may not ever accept that rare disease has touched upon my family’s lives and makes it harder for my girl, but have I accepted our story?
Meanwhile…we were really riding this high on life and sharing our story while advocating for rare disease, inclusion, and the daily life of a caretaker.
But what quickly grounded and humbled us among all the exciting chaos, was the stomach bug. It hit fast and furious- and took our Hailey girl out for several days, and we are still in the thick of it.
While it has been tough on our family for the past few days- the sleepless nights, the crying, the bodily functions, the worrying about dehydration, and always the “what if she ends up in the hospital” fear…there was simply more to it.
For two days straight, Hailey whimpered, consistently, on and off, clearly in pain and discomfort.
We fed her, held her, put on her favorite show, gave her a toy, tried to give her a nap, a new doll…but nothing seemed to soothe her.
The hardest part is that as her parents, we are not quite sure what is bothering her. Is it her stomach? Her head? Is she sad? Does she want to tell us?
I have always realized we have had obstacles and difficulties, but as she is getting older, bigger, and more aware, it is getting harder to meet or even understand her needs, wants, and desires.
Any caregiver can attest to the fact that caring for a sick child is no easy feat, but adding a nonverbal child who cannot pinpoint their exact ache, pain, or illness, creates a whole new layer of hard.
We have dealt with a lot- we have been through it all- nothing really shocks us or takes us by surprise. But, I think, seeing our daughter struggle with a pretty standard illness, took us back to a place where we did realize that in the midst of all the goodness and hope we have daily, it is still so, incredibly hard.
The middle of the night wake ups and trying to figure out what she needs through whatever means she can- has been something that we both struggle with as her parents.
It is funny when people ask, does she talk? How do you know what she needs? The answer always is the same- we figure it out because we know her and we listen to her- but still, that doesn’t mean we don’t battle with this challenge daily.
I always end a post with something positive because, at the end of the day, we have taken something that has been challenging, and made every day a positive by how we change our perspective.
And while I wonder what she is trying to say, I KNOW and HAILEY KNOWS that, without words, there is so much love that will push her through the obstacles, the illnesses, and the ins and outs of our day-to-day life.