It seems like my heart is arguing with my mind on a daily basis lately. Julia has to have a sedated MRI in 2 weeks. She wasn't scheduled for another until July but she's had a sudden increase in migraines. We know their migraines because she complains she has a headache, lies down, throws up then sleeps with an ice pack on her head. My poor baby :( I HATE this. Julia's neurologist wants a really good look at her brain stem to be sure the lesion there hasn't changed so sedation here we come.
Most days I do ok- I push all this stress away and focus, focus, focus on my very full, very busy life. Lately with these migraines and this looming MRI my mind is distracted. Thoughts about Julia, NF, headaches everything just swirl around my mind like a hurricane. It's hard to think of much else. I am doing better at crying though, I used to cry through days and nights and sometimes I would be crying and not even know it! I would all the sudden feel a tear drip down my cheek and think Oh I'm crying! It was crazy. I haven't cried that much over this just worrying and feeling tense.
My mind has to constantly convince my heart that Julia will be fine. It's a constant battle. My mind keeps telling my heart not to worry, to calm down that my baby girl will be ok. But my heart, my heart hurts and cries and jumps up my throat with worry.
My mind also knows that 7 year old shouldn't come home crying because their head hurts, a 7 year old shouldn't ask to leave the dance or the movie night because her head hurts. Children should just be free- free to play, dance, sing and have no pain.
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I'm so sorry, laura. Is there anything I can do from here? Besides just think about you guys. I have praying friends, so I'll have them pray. I'll call you before she goes in to see how you are doing.
ReplyDelete~Cheryl
Praying for Julia, and your family.
ReplyDeleteso sorry to hear about this I thought JULY was great - a change of schedule is always upsetting when it involves pain and upset. I am getting Julia a card and tiny gift for her August bday we can share addresses on facebook.
ReplyDeleteOh, and I have to chat with you about the brunch mom group.
thinking of you another NF1 mom
Hi from an NF1 dad from Argentina. I understand your worries and anger and can only encourage you to go on. I do hope Julia and your family the very best and though I'm somewhat at odds with God, I will pray for your Ladybug and for my Theo. Best regards and a big hug. David.
ReplyDeleteHello! I'm new, and just started reading.
ReplyDeleteI'm so sorry to hear your daughter is struggling right now, and with her so are you!
I also have a daughter with NF, she's 4. She has pain in her leg on a daily basis, so I know what it feels like to see your child in pain and know that there is little you can do to help. And to know that they are missing out on things kids shouldn't because of that pain. I spend more time wishing it was me than actually being able to do anything for her when the meds aren't enough.
I pray that her MRI goes well with no hiccups. I've been down that road many times myself, and I wish you and your family all the strength in the word.
Julie :)