I never thought I would have a home. A true home. I always wanted one. I wanted someone to say Good Night John Boy. I wanted a place that would never be taken away, that would be safe and whole. Where people stayed. Not for a few months or years before moving because we needed to go NOW without a plan or a safety net.
I used to love Christmas as a child. Before the freaking elf was invented, Christmas was fun and full of magic. My mom used to get upset with me when it came to Abby’s Christmas. I would never tell her it was Christmas Eve. She would just wake up (at her normal time) Christmas morning, surprised to see all the gifts.
It was perfect!
She got up at a reasonable hour, I received the best gift ever–not having to answer every single night if Santa was coming.
I’m finding it difficult to put into writing. Go figure, here is usually where I just let it all out. Last weekend our family traveled to Virginia to meet our PACS1 family. The weekend should have been an absolute disaster. We had 14 families traveling from around the world.
One PACS1 family traveled from Australia. The trip with their 2-year old son took 36 hours and upon entering the lobby the poor thing suffered a seizure. Being PACS1 parents meant that while the dad checked in to the front desk the mom gave medication and handled the situation. I’m sure the front desk clerk almost puked in her mouth. But PACS1 parents continue on with their lives.
Another child began vomiting and had to be admitted overnight. Again, the PACS1 parents handled the situation. One stayed at Busch Gardens with the older sibling while the other parent handled the ER. Then they switched off.
The hotel messed up 5 of the 14 reservations. Again, some would have thrown their hands in the air and gone home. Not our PACS1 families. We traveled from 4 countries to be together. Three families traveled from Texas. One family drove from Michigan. Two families from New York and another two from New Jersey. A family crossed the border from North Carolina, while still another flew from Kansas. A newly diagnosed family from Ohio was lucky when one parent couldn’t make it a friend said I’ll drive with you and became our weekend photographer. Bridget met her new best friend from Tennessee. Families from the US, Canada, Australia and Spain. Oh and our family from the Cape.
It was different than I had expected but so much more than I could have imagined.
It should have been an epic failure, but it was more awesome than I can fully describe. Continue reading →
A parent walks into the store, dragging her child kicking and screaming as other shoppers look on. A sibling walks into the store and says, “next time I will babysit so you can try to get the shopping done”.
A parent answers, “What time is it” for the 500th time with patience that is waning. A sibling tries to redirect the looping by distracting them with Disney Jr.
A parent tells her other child that they cannot attend the school play, because their sibling cannot handle the lights and sounds. A sibling whispers they understand while their heart is breaking. Continue reading →