HIE

Hi, I’m new here. I’m the full time caregiver for my five year old daughter who has spastic quadriplegic cerebral palsy. I live with her, my husband who works from home and our oldest daughter who is 8 and now is homeschooled due to Covid-19.
We have been very strictly quarantined since March 9. When my daughter gets even a cold she needs hospital care so we’ve been home and haven’t interacted in person with people this whole time. Up until about 7 weeks ago one of us would grocery shop, but now we use curbside pickup.
We turned down the opportunity to have in home nursing care in July/august to be safe. I regretted that decision as the school year started and I attempted to homeschool both of my children ages 8 & 6.
We have the opportunity again and I still can’t give a solid yes even with an exposure assessment, the promise of n95 masks etc etc
I’m scared but I also desperately need help and we will be locked down for a very long time to come. Is it time for me to accept the help or should I keep us locked down?
I want to hear if others have let caregivers into their home, your experiences with that and just generally any opinions and reasoning on what you would do in my position. There are a lot more details to share for context but this post is already so long.

Thank you for sharing your stories with me here.
#CerebralPalsy #HypoxicIschemicEncephalopathy #Gtube #MedicallyFragile #MedicallyComplex #MedicallyComplexChild #SpecialNeedsParent #ParentsOfChildrenWithSpecialNeeds #GettingHelp #HIE

Triggers....

Sometimes it’s a song on the radio, a certain scent, or maybe even a commercial.

You never know when something is going to unexpectedly come out of nowhere and cause you to relapse back into emotions.

For me it was placing a pair of shoes on Lawson’s feet and finding old footprints on the bottom from when his sister wore them.

Quick incidents like this is what brings you back to the harsh reality of what once was or what could’ve been.

This most definitely wasn’t my first or worst trigger, and it sure won’t be my last.

It’s the triggers that make you come out of your bubble and remember to fight what we are truly here for on this earth; reminding us to keep our eyes on God and find peace in the “what could’ve beens.”

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“What if your “I don’t know” is helping you let go of things you aren’t supposed to know, because that knowledge would be too heavy a burden for today? But the One you do know, the Lord, is so perfectly capable to bear it all. We think we want comfort in the I-don’t-know times of life. But comfort isn’t a solution to seek; rather, it’s a by-product we’ll reap when we stay close to the Lord.”
— Lysa Terkeurst

“Dear friends, do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you. But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.”
‭‭1 Peter‬ ‭4:12-13‬

#SpecialNeeds #cerebalpalsy #HIE #trigger #Faith