All kids have milestones that are not in the what to expect (not!) handbook. New moms and dads dream about the first “momma”, the first fish caught and the first time their screaming newborn sleeps through the night.
There are however other milestones they are not aware of and some even I never expected.
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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.
Just a home, one where there was laughter and sunshine. Continue reading
Dear Special Needs Dad,
I see you.
I see you in the NICU scared out of your wits but holding it together for your partner.
I see you in the waiting rooms, rarely speaking but always listening. Continue reading
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
I learned in science class that for every action there is a reaction. The ripple effect of a butterfly flapping their wings in Australia leads to a wind storm in Nebraska. A person in front of you that pays for your coffee, sets the tone for your day. Continue reading
“Mom, when can I sit in the front seat?” said my child who is still small enough to use a booster seat but old enough that she wants to be the tween.
I remember the first time I had to place her in a car seat. How it took us three hours to figure out how even install the thing. I remember when we would keep her strapped into the car carrier while we grocery shopped. How I didn’t know how to put the car carrier on the grocery cart, so I put it inside and piled up the groceries around it. (Least expensive shopping trip ever). Continue reading
I’m not quite ready to let go of 2015. We had a lot of excitement, a lot of laughs and so many moments where life just went right.
January–I was so happy to be one of thousands who used their blogs to spread compassion and empathy throughout the internet. Yvonne and Lizzi created a call to action. One where we would actively look for moments for all of us to agree that it takes a village to raise a child, and therefore a village to create a world where we put compassion over judgement. Continue reading
This summer I have taken more time off of work than I ever have in the past. I have taken more time to spend with my family. I have traveled and I have connected. I have also disconnected from my phone/e-mail/social crap. I have read more books this summer and watched less reality TV.
I’m freaking exhausted. Continue reading
Today’s Throw Back Post is about my friend Kaylee. A girl who is an incredible hero. Once again she is participating in the Polar Plunge to support Comfort Zone. The camp that allowed her a safe place to grieve and to grow. Please consider to once again donating to her cause. No child should lose a parent, but if they do then they need places like Comfort Camps. Her plunge is coming soon, Feb 28, 2015. Given the current arctic winter we are having, I am hoping she doesn’t have blizzard conditions!
I am in awe of children. Children who want to make a difference in other’s lives. Whether it is a huge movement like Malala or providing comfort for another child. I would like to introduce you to a beautiful seventh-grader named Kaylee.
(Un)Diagnosed and still okay 