Samsmom: Life, Joy, Loss and Loving your Mitochondria

Gloves

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Hschichie

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I have taken the boxing gloves off tonight….

Because they are heavy, cumbersome, I think they might cause carpal tunnel and I no longer feel the need to fight.

It has been a day.

Samantha is on her third I.V. today. Her arms are swollen and puffy from failed lines leaking into her system. She is exhausted; bruised from fighting nurses and needles.

Tonight she is also comfortable, peaceful and sleeping.

Today I have confronted doctors, been on uber-high alert, questioned my judgment, questioned their judgment and held my daughter through her tried and failed I.V placements.

It has been a day.

But really? It hasn’t been a bad day, a hard day but not a bad day. Samantha now has a working I.V. and I feel like we have a new relationship with our medical team. She’s currently snoozing away and comfortable…such a change from last night.

It was a confrontational day but people ‘had our backs’ the whole time. We had a great nursing staff, supportive friends and our fabulous Dr. E pulling us through.

Times when I fight for Samantha and get positive results are never in vain. AND as a friend so wisely pointed out….the pancreatitis will resolve in time but most importantly, we are still seizure free.

I still feel like I will turn a corner and confront the evil seizure monster but I also think that if we were to have big, awful ICU seizure issues because of the wean, perhaps we would have them by now? Knock, knock, knock on wood.

Tonight I read through Samantha’s e-cards; sent by you all. She has so many we are decorating the inside of the door with them. It’s hard to feel defeated or deflated when we have some many wonderful wishes and people rooting for our girl.

That and I’m watching New Moon…giggle, giggle, giggle

3 responses to “Gloves”

  1. Deana Avatar
    Deana

    I am sorry it was a rough day. But still no seizures…such fabulous news! We're still cheering you on from here…wish Max was having a better week with his seizures so I could come up and visit. Looking forward to seeing you Monday.

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  2. Maria Avatar
    Maria

    Hi Heather,It was great to see you yesterday. Never feel that you don't do everything for your Samantha. I know you do. I know how hard it is to be next to your child when the nurse is looking for a line that just doesn't seem to be there. Very happy you now have one. It makes a world of difference – and no seizures! Love, Maria.

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  3. Rebecca Avatar
    Rebecca

    ” Samantha I love you. Feel better.” – Caroline Martin”I want to email Manatha!!” – Max MartinI tried to get more out of Max but he just felt it was very important to email Samantha. He is holding a calculator and he thinks he is emailing her right now. :)I am glad I found your blog. I am sorry to hear everything you have been through and are going through. You are so strong! I wish Samantha all the best and we will be praying for her as a family.We will be at Children's on Monday for an MRI and Spinal tap for Max. I hope you all are safe and well at home by then, if not, Ray and I would like to visit Samantha, if that is alright. We will come by around 11 AM? No worries if you would not care for visitors.Deana, I don't know you, but I see you have a Max as well. I hope his seizures stay away. Parenting these kids is such a ride! My Max has never had a seizure, I can only imagine how scary it must be as a parent, and the poor child!

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Hello,

I’m Heather

Welcome to Samsmom and over 15 years of stories about love, loss, grief and the process of moving forward. It’s not always pretty here, but it’s honest. I’m a writer, a fund raiser, rare disease advocate, Mom of two Littles who are no longer here, Wife of Hubs, Aunt to the Phews, daughter, friend and unapologetically me.

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