When Susan first asked me to be a guest poster today, I was very excited (not that I am not still!) I had written out my entry and finalized it by Monday. Then tuesday came, and our worlds collided with another diagnosis for our little girl. My initial post was entitled “The Joys of Being a Special Needs Mom”. But if I am going to be honest, and do this entry justice- I dont feel very joyful today.
When we first started this journey 5 years ago with Emma Grace, I felt lost. I had never experienced having one of my children in pain, or in need of constant medical attention. My two other children were the epidemy of healthy. I felt as if I had been thrown into a new world without the tools to navigate it. Little by little we learned the terminology- “Broviac- ah yes that is her central line- Chest tubes- those should come out soon”. Little by little our new world became familiar and we gradually gained the tools to navigate around all of our new surroundings.
Then came the heart transplant. Funny how that one really didnt knock me down. I think I handled it by embracing myself around the fact that should she not get this transplant, she would die. So it became a light at the end of our tunnel, so to speak. But that light would soon become even more dim a few months later.
Mitochondrial Myopathy. Terminal Illness. Hopeless Disease. Those words hit us like a ton of bricks, yet once again we pulled up our boot straps and fought for her future. We learned to navigate that system, we educated ourselves on how to get things done that others were unable to acheive. We found our new normal. Again.
A few years passed. We were in the home stretch with our new life. The older kids had finally found their niche and we were finally able to devout a good amount of time to their every day life, instead of sitting in hospitals with Emma. Emma’s health seemed to have become somewhat stable. We became comfortable again. That was until January of last year when we found ourselves meeting a helicopter that held our child, and a month long stay in ICU. Her heart was failing again.
We pulled through that one, a little more worn and a alot more aware of our daughters limitations. We settled once again into our new normal and got ready for her next obstacle- School. Emma was now 5 years old and ESE Kindergarten was right around the corner.
Yesterday, our world was rattled in a way that I never expected. Ive always know that my daughters neurological state was compromised due to her disease. I always knew in the back of my mind that she was pretty significantly delayed. Yesterdays diagnosis hit us smack in the middle of our semi- normal existance.
Why am I telling you all of this? Well honestly, I needed to say it. But I also want to share with you that despite these “hard knocks” – God is still a God of Grace. Many people hear our story and wonder how we have sustained our faith- That is an easy question for me to answer Our faith has sustained us! If you have visited my blog, one thing you know about me is that i am very open about where I am in the midst of my life. I am open about about where I am in regards to my relationship with Christ. Life has thrown my daughter quite a few hard pitches, and our family has been flat on the ground more than we have bene in the upright position, but we also know that God does give us more than we can handle, because if we could handle this, we wouldnt need Him.
I may be lost in the midst of this new diagnosis right now- But I know He holds my hand firmly. I know he holds her heart with even more strength. I could walk the road of bitterness and anger, quite a few parents in my position would, and do. It is a daily decision to walk the road less traveled. It is one of the hardest things I have ever done, because it takes a great bit of humility and selflessness to trust Him, especially walking the road we have walked. There have been plenty of times I have wanted to turn down the road of denial, or self pity- and honestly I have stopped at those places many times. But He places His hand on my back and guides me down the path set before me, and when I think I cant walk it anymore, He carries me.
He always carries me.