Years ago I began a journey. I had no idea how long of a trip it would be, I had no idea where it would lead us. It was a journey to find a way to give my daughter a better life. It was a journey to find answers to her body.
I was told over and over that there was nothing I could do. The only solution I was given was one I absolutely hated and refused for my child due to extensive research.
But, despite the number of times I was told there was nothing, in my heart I knew there was something there. I knew there was a reason and I knew there was something wrong. I knew there were solutions out there, I just had to keep looking.
The journey was horribly lonely at times; but the bond she & I share now is something I treasure & is a bond you cannot put into words. There were so many moments of weakness, too many moments of defeat & several moments where part of me wondered if I was just crazy. If I was completely losing my mind. I found myself lost in moments where I was not sure my heart could take one more step backwards.
But as a mom, there was a fire inside of me that even when it felt it was about to go out, the flame never fully diminished.
I had promised my daughter one day, as I looked into her eyes and held her hand, that I would never give up.
As parents we always want to give our children the best. We want to provide them with a healthy and happy life. We want the best teacher; not the mediocre one. We want the best school system, the best pediatrician. When it comes to our children, we do not settle and simply say, “good enough.” Trust me, I know my daughter is healthy and I know exactly how blessed we truly are. But, that did not stop me from wanting to help her.
This journey took time; it took having to truly increase my patience. It took many “no” answers. It took trial and error so many different times. It took so many tests. It took getting our hopes up over and over only to get them shot down.
Until one day, we met with the surgeon that performed her surgery as a baby. He asked me what I thought about trying out this clinic in Ohio that was doing something unique with kids like her. What? You mean there are kids like her?!!
It took many trips. It took this team to see what was wrong. It took them going in to see how bad it was & making an extensive repair. It took them going back in due to scar tissue. It took over another year of constant X-rays and emails back and forth and constant tweaks.
Today, I sit here with a smile. I am so thankful that I never gave up for my girl, despite the number of nights we both spent in tears. The struggles, the trial and errors over the years, the storms she fought through.
Every day we kept the belief that tomorrow was a new day. It was always a new day for things to go smoother. It was a new day for getting closer to answers. It was just a new day & yesterday could be forgotten.
As I pulled away from our home away from home this week, tears welled in my eyes. I can say now, my girl is finally on a better path. We love our little piece of this world, we fit in here. We have others who understand us; we have others to share experiences with. We have families we connect with.
I promised her I would never give up and this mama’s heart could not be more happy for her, for her future. Our journey is not over, but the strides her body has made is amazing. Just like any big change in life that you make in hopes of progress: it’s messy. Sometimes it is two steps forward followed by three steps back. Sometimes you have days where you just want to give up hope and forget it.
This is a three-month trial & my precious girl & I will happily do the cha-cha with our steps forward and back fully believing this is the right dance to carry her to a better tomorrow.
Until Next Time~
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