I have read so many articles and Instagram posts and facebook posts about special needs moms and how they miss out on everything because of the “life they live”. I have read posts from moms in similar positions and circumstances as me in private facebook groups and have read over comments giving advice about what to do or how to make our lives easier.

In 2015, I wrote a post titled It Will Never Get Easier

I wrote about how hard life was at the time. I was talking to another transplant mama who had been through exactly what we were about to go through and I had asked her if it ever gets easier. And she kind of chuckled and said no. I was really waiting for her to say haha just kidding yeah it does. But she didn’t!! After a long discussion she said “It doesn’t get easier, but you get stronger.”

I have lived this new life of ours for so long now that I KNOW it doesn’t get easier. And I have come to realize that this special life of ours is never going to get easier. Even now that we are POST TRANSPLANT .. its NOT easier!! This is a whole new roller coaster with a whole new set of worries and set backs.

These past two weeks have been a punch in the gut for me. Matthew became very sick and we had no idea what it could be. A whole bunch of symptoms of what we THOUGHT it would be all came back negative. We had him on antibiotics and medications for illnesses that were completely wrong. Only to find out two weeks later he is suffering from his very first bladder infection. A week full of hospital visits, tests and scans … and we have finally found the culprit. Based on his ultrasound he had two days ago, it looks like we caught it early enough to NOT let it get to his good kidney. Only time will tell…. only test results every few days for the next couple weeks will tell.

None of this helps with my anxiety. None of this helps with the peace I have been praying for over and over again for months since the last time he was in the hospital. I had no idea, honestly, the depth of my anxiety of another hospital stay until we were faced with one. The last time he was inpatient he became gravely ill. But God was in the midst of that. God has been in the midst of everything. HE always IS. He ALWAYS has been!! And I know He always will be.

But this doesn’t remove my human worry. The fear I feel as a mom. I KNOW my son is in Gods Hands… I just hate the fact that I have to bare witness to it. I have to give my son’s life to God everyday. I have to give up my worries and my fear to God every single moment. That’s not something that people do on a daily basis.

Now don’t get me wrong and don’t get my words twisted… I don’t, for one second, doubt that the Lord will heal my son completely. I KNOW THIS!! I know this to my very core!! BUT… to have to go through this is something totally different. To have to see my son so sick… to see him in such pain… to feel his fingers dig into my back as he is grasping me and hugging me in pain. As if he comes to me because I am the one who is supposed to make him feel better. Yet KNOWING… I CANT!! Its excruciating. He cries to me and looks at me like, “IM SICK. IM IN PAIN!” And knowing I cant do anything to help him or relieve his pain…. it breaks my heart all over again!!

The reality of our circumstances … of my sons illness…. of his disease…. of his pain…. has become unbearable. This week… was hard. Dealing with the unknown and dealing with what I need to do to make him feel better or to relieve his pain or to make him comfortable despite his pain… it was hard.

I hate that I don’t have anyone but Jesus to go to. I hate that I have no one to talk to about this. I hate that no one understands this excruciating pain that moms, like me, feel.

I thought that my heart was healed a long time ago… it was a sad reality to know that it has not. My heart is still so fragile. And I am still picking up the pieces of my broken heart that have been scattered around. I am still learning how to maneuver through this very special life of ours. I am still learning that God doesn’t give us more than we can handle… but He gives us the strength and the faith we need FOR TODAY to get through it. Giving it to God is a daily goal. Living life on purpose is a daily task and keeping my faith and surrendering to God’s plan for me is something that I have to do with the pieces of my heart and my mind every single day.

“I surrender, Lord, to your plan. And I trust in you.” 

Life will always be hard….

xo