Trying to Find Grace Within Faith In Special Needs Motherhood
By: Stephanie Ulrich
Tags: Faith, Special Needs Parenting, Religion, Grace, Motherhood

I know that I have faith in God because I believe he is here without a shadow of a doubt.

Faith is knowing God is real, like you know that the wind is real. You cannot see the wind but you can always feel it.

You will never be able to see faith but, you will always be able to feel it.

Grace is peace. Grace is acceptance.

How do you find grace within faith when your child is sick?

I’ve been searching for grace for two years now, and every time I think I have found it death comes walking in the door like a holder to even the smallest amount I think I may have found.

Grace is getting to sleep thru the night without the fear of death taking my toddler in the middle of the night without me ever knowing.

The minute I watched my son stop breathing was when I undoubtedly fell from grace without losing faith for even a second.

I’ve always continued to pray, I’ve never stopped believing that God is here. For so long I have gracefully let my anger towards him cascade into a volcano that I would cover up little by little every time it started to erupt.

Each time we landed inside of a PICU on a ventilator with every beep of low oxygen levels a little bit of grace would flood out of my body thru tears like prayers to God begging him to save my son and take me instead.

Faith is what kept me going, but grace is what gave me the will to fight for my son when he was too tired to breathe.

So many days I still have faith but, I'm losing grace faster then I can get more, I have fought so much, and for so long that I now just long for peace.

I long for the peaceful nights full of hugs and kisses without the beeps and swooshes of the oxygen in the background.

I long for the nights of big dinners and fun baths without the alarm of another gtube feeding that must be done no matter the time of the night.

Grace is slowly leaving me with every diagnosis added on to his list of medical problems.

I believe that every mother tries to wipe away the tears in secret as she stands strong in front of her family and friends.

The oh so common words of “it could have been worse” will echo inside the mind of a mother as she wonders if she can gracefully tell someone that she is falling apart thru faith.

Grace is being able to have peace and dignity in admitting “that you are not okay, that you are falling apart as your child fights to live.”

To have enough grace to do this, you must have more faith that God is here, but in that time, at that moment you will be searching for more faith than you ever have in your life.

When the worst of the worst is happening and you are laying in bed imagining what you will do if you have to bury your beautiful child your faith is lost, and once you lose faith grace is then gone with no sight.

It is a thought most mothers never imagine. Maybe for a second, but for me, for the mothers of special needs children it is a fear that comes to mind with every single PICU stay, with every fever, cold, or injury they wonder if this will, in fact, be the last.

We have all spent every day trying to be the mother that God says we are supposed to be. When every few months something happens, and death comes knocking on our door like he is holding a sign with the way to the funeral home.

In a moment where there is nothing worse than all of the feelings of guilt, grief, and regret that is going on inside of my mind as the mother who couldn’t protect her child no matter how hard she tried.

These feelings, these fight or flight emotions have never gone away, and we continue to live in this constant state of fight or flight. Only trying to hang on to as much faith as possible while slowly trying to find any amount of grace.

Over time I have put up a guard to my heart because every time I feel as though my child will be okay God sends me another test of faith taking all of the grace I had earned with it. It feels as though God is tricking me like this test is no longer a test, and he is only preparing me for the inevitable.

Some days I wonder am I only gathering grace to give it all back on the day I just can’t save him? Is my faith only preparing to still believe that God is there on the day that he decides to bring my child home?

Every day I am afraid to love my own child because if he dies I don’t know how I will come back from that. If God takes him, I don’t know if I could ever have faith again.

If my child dies I am afraid I may have my final fall from grace. So I continue to have faith and search for grace, in hopes that I gather enough that this never happens.

I suppose it seems that all I know is that today, tomorrow, and every day I’ll continue to love him as long as I can. As long as he is here I’ll continue to have faith and search for as much grace as I can in hopes that one day I will find peace inside of grace.

I don’t know how long I’ll be searching for, but every day I continue to find just a little bit of grace and continue to work on having a little bit more faith.

With faith comes grace, and I’ll simply keep searching for that for as long as I can with a cup of coffee in my hand.

For as long as my child is on this earth, I’ll love him as much as I can, I’ll continue to fight as much I can, and I’ll pray every night that I am never to late.

I am his mother, his only protector.