Shop to Support! To our prayer warriors: please keep this family in your daily thoughts and prayers. Ozzie won’t be with his mama and dada for very much longer earth side, and anything you can do to help them is greatly appreciated. Another rare warrior mama (@finding_our_rainbows) has offered to collect donations for them on Venmo: @Maria-Beltran-p
A heartbreaking post by @lifewithozzie:
“Yesterday I did things I never imagined I would have to do.
I ordered an outfit to bury my child in.
I bought a dress to wear to his funeral.
I spoke to a funeral home to plan out his celebration of life services, pick a casket and reserve our family burial plots.
I made lists of things to do with my son before he leaves us.
I’ve cried so much this week, I’m not sure how the hot tears keep coming...but they do. We felt it was important to make these decisions now and plan as much as we can in advance while we can give our all to these sacred decisions.
I almost feel guilty for planning things and making arrangements when he’s still here. I know that’s silly, but my heart is being pulled in so many different directions. As we get closer and he gets weaker, I don’t want any distractions from our time with Ozzie. I don’t want to leave his side, and I know my heart will be too broken to honor him in the way that I want. I want that day to be filled with so much love that it will light up the heavens. It’s the least I can do to honor our little warrior and his precious, hard fought life.
Today I thank God for giving me the strength to make these decisions and the time we’ve been given with Ozzie to allow us to make the most of every single second. I know it could be ripped away at a moments notice, so I do not take this gift lightly.
EVEN STILL...God is good.” - @lifewithozzie
#OzzieDeason #preemiewarrior #hydrocephalus #rarewarrior #raredisease #ppp2r1a #ilovesomeonerare #adovatelikeamother #specialneeds #specialneedsmama #disability #disabilityadvocate #inclusion #infantilespasms #westsyndrome #intractableepilepsy #lennoxgastautsyndrome #epilepsyawareness #epilepsywarrior #1in26 #endepilepsy #epilepsyambassador #prayerwarrior #hollandtribe #OzziesWarriors
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