I just want to be her Mom

What I want to be: Her Mom. Just her Mom.

Holding her in my lap after a seizure at the beach. Just being her Mom.
Holding her in my lap after a seizure at the beach. Just being her Mom.

What I am:
I am the “holder downer” when the needle pierces her vein as she gets blood drawn. Again

I am the appointment scheduler for all of the myriad specialists.

I am the one that drives her toward the “owies”.

I am the tear wiper and the hand holder.

I am the one who tries, but fails, to keep the panic out of my voice as I reassure her when the seizure hits.

I am the one who calls the insurance company when they suddenly won’t approve the medication that she needs.

I am the one that propels her in to all of the therapy appointments and specialist appointments.

I am the one that evades the question “will it hurt?”

I am the one that lies next to her in a hospital bed when she’s literally tethered to the machines.

I am the one who puts my mouth on hers, not to kiss her good night the way a Mom should, but to breathe air into her lungs when her body can’t do it for itself.

I am the one who shoots a dirty look at the IV nurse who just missed for the fifth time.

I am the one who will hold my ground against a doctor who thinks he knows her after 5 minutes of shining a light in her eye and tapping her knees.

I am the one who can’t let the tears fall.

I am the one who holds her down on the table as she screams because the anesthesia for yet another test burns.

I am the one shouting at the anesthesiologist that she is not supposed to have that anesthesia because it decelerated her heart rate previously.

I am the one who can recite her medical record- hospitalization dates, failed medications and their dosages, previous side effects, diagnosis, list of doctors, phone numbers, seizure frequency- by rote.

I am the one who yells “Are you ok?” Every time there’s a loud noise in the house.

I am the one who sees the gap between her and her peers ever widen.

I am the one who reads specialist reports and wishes they focused more on what she can do than can’t.

I am the one that sits in the IEP meeting fighting for more services to try to close that gap.

I am the one trying to prove that she’s worth fighting for when really it should just be known.

I am the one who can’t sleep because of the fears no one wants to talk about.

I am the one who says a prayer every time I touch her bedroom doorknob that when I open it I won’t find a dead child.

I am the one who will lie next to her watching her breathe, grateful for every breath that she doesn’t have to fight for.

I am the one who spends hours every day working toward safe, consistent, legal access to the cannabis that could be her miracle.

I am the one who feels like a failure even though it’s our government failing her.

But…
I am the one who saw my child emerge from her zombie like state.

I am the one who marvels at a gleam in her eye that was never there before.

I am the one who stops in my tracks at every new word.

I am the one whose heart fills with love and pride when after a night full of seizures my girl gets up and goes to school.

I am the one who caught her breath the day that she carried her own backpack after months of being too weak to do it.

I don’t want to be her nurse, her therapist, her teacher, her lab tech, her personal scheduler.

I just want to be her Mom.

What I am- much more than a Mom

18 thoughts on “I just want to be her Mom”

  1. I was this woman and would do it all over again!! I also praise God for every moment I got to be her mom in her short 16 years and that she doesn’t have to go through any more pain and suffering!!

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  2. It all leaves me feeling a bit bipolar. The out of control part of me that wants to cry and rant and rave vs. the part of me that is not allowed to lose it or I’d surely lose him. Well stated!❤️

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  3. Wow I so wish my Mom was alive to read that. I was born with multiple birth defects back in 1956, to a single mother. I was very lucky to live close to New Have so they sent me right to Yale New Haven Hospital when I was born. My Mom did not hold me for the 1st six weeks! I am know 58 years old been through over 40+surgeries. She walked to train station every day and took train to New Haven and then walked to hospital to be with me every day all day. Sometimes with little money for food, I remember the nurses buying her sandwiches. Back then she wasn;t allowed to be with me for test, xrays, and surgery I still remember the ether…before the new stuff, that came as a teenager. There were no children’s hospitals back then just one floor Fitkin 5 the pedi unit. Of course I was a regular as many were.The thing they did to try and keep us busy, I can know laugh, they tried. They would send us to the labratories and see the mice and then the next time the monkey’s and when it was warm they took us up to the roof of the hospital to play and get fresh air. They were great nurses, always the same ones. I was also very fortunate to have the best of surgeon’s and they managed to put me together, Of course there were fixes and revision’s as I grew, but by then I was used to it and almost liked it because all the neighborhood stores would send me puzzles and crayons, coloring books. It’s is funny the good things you remember in such hard times. But then again I was a child, and my Mom was the soldier then. She taught me from an early age that someday I would have to do this on my own and be a strong girl/woman because she would not always be here, and I would always need medical care. Little did she know she would leave me at age 53. I was only 31, but she had been sick for a few years and I was in hospital a few times and it killed her not to be able to come. But I called her every day no matter how sick I was, not letting her know, because now I am the soldier standing alone.She ask me to find someone to marry so I would not be alone, but little did she know how tough she made me. I so am amazed at your courage and strength as you help your precious girl through this, I just hope she can be as lucky as I was way back then and find a cure and get some Doctor;s that have real love and care for their patient’s, see I have been blessed over and over with that through these many years. if you want to reach out please do through my FB page. God Bless You and Your Little Girl. Faith helps I have learned through the years.May you find some comfort in yours. Be Well Little One!

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  4. God bless you I’m not a mum of a child, but newly diagnosed my kids my husband all are the same I just want to be a wife and mum again not a 5 yr old they have to worry about.
    Your post is beautiful in every way I do hope they do something for you and your daughter and me all of us really. Understanding would be a good start!

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  5. This is so powerful! You captured the life that so many live, but you’ve done so eloquently. Thank you for sharing this. You and your daughter are an impenetrable team and that is the greatest gift of all. Wishing better times for her soon.

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  6. thank you so much for writing this!! Your every word made tears fall. Its as if i wrote it myself word for word. This is our life!!

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  7. Can’t keep from crying While reading your words. I’m so glad that you put them down for us to read.It makes me feel like I’m not alone. I too would love to be mom to my daughter. Thank you so much!!!

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  9. Just remember you are not alone . I drove my daughter mad with that line of yours …”are you ok ? ” at every noise … She is now 20 years old and trying to navigate life without her over anxious mother … 😪 ..

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  10. Bless you and your daughter. I could be your mirror image. I have the same exact thoughts daily but with my little boy. Best wishes and lot’s of love and prayers for all of us out there fighting.

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