Sprinkles, cookie presses and mom guilt

(I wrote this almost three weeks ago. Figured it was about time to post it 🙂 )

“Kate,” I hear a voice as my eyes slowly start to open.

“Uh yeah,” I mummer

“Your boy is up and might have been for awhile.  I just found him outside with a meat thermometer, cookie press, and sprinkles. I am running to work.”

“Oh okay. Thanks mom.”

Groggy, I get up, get to the kitchen. And the morning begins. Instantly Isaac wants breakfast and a movie. Instantly I want everything to stop moving until I can grab a cup of coffee.  We work it out though. I get coffee, he gets breakfast and then a movie and the morning seems to be slightly redeemed.

8:30 rolls around, then 8:40, then 8:45 and I have no nurse yet. Normally she is there by 8:30, and I get a sinking feeling that I am not going to have a nurse today.  I hold onto to hope though, and slowly start Katie Grace’s morning routine. Breathing treatment 8:45… maybe she is still coming. Morning meds 9:00….maybe she is just going to be an hour late. Position change 9:10….she could get here by 12 and I would be grateful. Breakfast….9:15, the hope starts to slide away and reality sets in, I am probably not having a nurse today. Phone call 9:33…no nurse confirmed!

Then Boom!  Mom guilt….right in my face, prepared to just spend the day beating me up.  Cause here is the truth I realized yesterday.

I feel guilty all the time with my daughter.


I think I should be more for her, do more for her. I should do all of her treatments, I should do more physical therapy, I should do more brain therapy,  I should hold her more, I should always be moving her and changing her and always doing something unless she is sleeping.

(I really don’t want this to sound like I neglect my daughter. I don’t. I am very much in her business, and sometimes she lets me know mom, just let me be for a minute. I just think there is this more that I should be doing.)

There I said it. That sits on me all the time.  When I have nurse, I can keep it at bay.  The nurses job is her, so my nurse spends all day, doing physical therapy, changing her position, putting braces on, taking braces off, giving meds, keeping her schedule, etc. etc. etc.  I can push the guilt aside and say, she is fully taken care of.

Truth is I brought a nurse into my home because I knew I needed that.  I knew I needed help managing Katie Grace’s life.  I knew her level of care was high and I was going to need help.   I felt guilty for it though.   I still feel guilty. I haven’t been able to make a peace with myself about Katie Grace’s care and who I am as her mom.

You see, there are many different routes you could take when you have a special needs child.  Some parents or caretakers are all in….their everyday, very life is all about their child’s care.  Some are halfway, they do bare minimums. Others just ignore issues.

I just can’t seem to find my way in it all.  I look at my daughter and how well she is cared for and I know that is me.  At the same time, there is voice in my head that tells me that I am not doing enough. That she is only cared for because a nurse does it.  That I am never going to be good enough to be her mom and I am failing her everywhere I turn.

I can’t seem to beat the voice. I can’t seem to speak truth to it enough.  I am tired though. I am tired of feeling guilty…of thinking I am failing her all around. When will I be enough for her?  When will I stand in the truth that I am enough. I am not perfect. I am not doing to be able to be her physical therapist, occupational therapist, brain therapist, nurse and mom. I can’t be all those things, I can be certain things at certain times. But I can’t do it all.

I really can’t do it all if I am coming from a place of guilt.  There is no life in guilt. There is only death.  Guilt paralyzes me even more.  It silences me as her mom even more.  I don’t want guilt. I want freedom. I want to walk in the truth of who I am as her mom.  I am not perfect with Isaac. Yet I find myself giving myself more grace with him, then I do with her.  I forgive myself a little more easily with him, then with her.  I just don’t think I have the same grace with her, that I do with him.

And I think that could be a very grave mistake.

Cause if I take a minute, and just breathe in the Lord.  I can hear her whispering to the Lord, her favorite things about me. I hear her tell him, she fights like me.

“Tenacity its our thing, we are Katharine’s, with an A that is.” I can see her smiling into his ear

“And I have her eyes, and her skin and we are built just like each other.  And we love to laugh.” she whispers in delight in his ear

I can see her smiling with joyance at who I am as her mom.

And I can understand that she knows I can’t do it all, and I can see that even more then me because she has the understanding of the Lord in a way my being longs to have.

I can see that I am mistaken when I think that it all lies on me.

There is no guilt in heaven, and as my daughter brings heaven here to earth.

There is no room for guilt in my relationship with her.

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