PCH Family Meet-Up 2017

Yesterday I achieved a huge personal goal.

I fulfilled a dream I have had since I created this blog. Homemade Hope sponsored the very first ever North Eastern Pontocerebellar Hypoplasia (PCH) family meet up.

We have an online community for which I am on the board of administrators, it consists of nearly 500 individuals who love a child with PCH. It is a group like no other. There is just so much raw and genuine love there for every child. Its like having an enoumous network of aunts and uncles who love your child just as firecly as you do. Who are there for you at any hour in the middle of any kind of crisis. We love, laugh, and advocate together for our children. They have become some of my closest and best friends over the course of Sophia's life.

When she was born I was nearly cripped by the weight of it all. It was just... way. too. much. for any one person to bear on their own. The anxiety, the crippling uncertainty it was ever present. Nothing could provide relief from feeling like our world was crashing down around us and nobody understood.

Until I found the online community of families who had been there. Who were walking through the same fire and somehow were still okay. They were still enjoying life and finding pleasure in making the little stuff, the big stuff. Smiles, family walks, good days they were celebrated in this community. But more importantly on the bad days, they rallied together to provide strength and support to the moms and dads who really needed it to get the tough stuff done. Its like our group is a small little world where things are as they should be. Uplifing each other and sticking together though the good and bad. Like a family should.

So with the help of some amazing and generous donors we were able to have a fun relaxed afternoon and enjoy some great food and incredible company. We held each others kids and swapped our stories. Connecting in person with a handful of the people who make every day feel less lonely. Who make our new normal a place that I am really proud and happy to be in. The moms and dads who came yesterday are like a part of our little soul tribe. Our hearts beat for the same things. There was no awkward feeling, no weirdness AT ALL. It was like we were a bunch of old friends coming together. Yet we had never actually met.

To see Sophia along side of these other beautiful children who fight so hard every day was amazing. If you could channel the sheer strength of will that is inside of the group of parents and children that were assembled yesterday we would be able to lift a bolder like it was a feather.

Many times yesterday I just paused to soak it all in.

I was once told Sophia had a rare and life changing neurological issue. I vowed to make her life the best it could possibly be and to help end the isolation and lack of community support that is such a hard reality for parents of special and different children.

While I stood in a room yesterday watching real life connections being made. People holding each others children without hesitation and soaking in their pure beauty. I couldn't help but be moved. One baby was having a tough day, so when the pizza arrived mom and dad set up to take turns eating so someone could be holding the uncomfotable baby. But then another momma there who's son was unable to attend the meet up offered to hold him so they could get a small break. They passed him over without pause and the baby stopped crying! She held and swayed him showing a grace and experience that only another PCH mom could have.

It was a small act that held so much love.

It was incredible to see people talking about G tubes, GJ tubes, seizure meds, procedures and diagnosis day stories. As well as swapping notes on different specialists like it was normal coffee talk. I felt so much pride. Pride in the resilience of the human spirit. Pride in the power of an act of love can have. Pride in the power of community. It was simply a beautiful and truly moving day.

I want to take a small moment to give a nod to the PCH dads. The group of men present yesterday all share a fierce and unconditional love of their children regardless of circumstance. They work jobs, support their wives, drive to doctors appointments, load and unload supplies, pick up prescriptions, wipes drool , wipe booties, wipe tears from their wives faces. They sometimes sleep alone, they sometimes don't sleep at all. They are unsung heroes of their families and I just wanted to take a moment to say we see you, and we are SO thankful for the roles you play and the effort you put in. Without the dads doing what they do the moms would never be as strong as they are. This life is hard and it takes A LOT to be able to support your family through so much. To be that constant presence for your wife and your child. It matters. It matters so much. So thank you all, thank you so much for being there yesterday to show your support. I know mom groups and meet ups are totally not the way you'd choose to spend any given Sunday. Yet there you were, doing what you always do , loving your family. Us moms appreciate you so much.

Also thank you to all of our amazing and generous donors who made yesterday possible:

* Dunkin Donuts of Wethersfeild, for the coffee and baked goods.

* Illianos Pizza of Middletown, for the pizza and 3 ft grinder.

* Stretch Arts, For the grant to make the crafts and gifts possible.

*Stretch Pediatric Therapy and Creative movement studios owner Dr. Alicia Berger-Harriman for the use of her amazing studio and therapy supplies.

It is my hope that this becomes an annual event.

That it grows larger each year and that we get to watch each others children grow.

Here are some photos captures of yesterdays events.