To the friends I've never met,
Dear mom-friends I've never actually met:
I wanted to write specifically to you today because , well, honestly I think you need to hear this….
We share a very unique bond. We belong to a sorority of sorts that you can not pledge for, and you never . EVER. planned on joining. This sorority is one for which you can only be selected.
It is also one that you stay actively involved in for the rest of your life.
This is the sorority of warrior moms, and I am so thankful to be in such impeccable company.
We all share a common bond in the selfless unconditional love we have for our children. We all share a bond in a very specific type of heart ache and strength.
Most of us have likely read the poem “ welcome to holland”. Its a lovely poem that helped me to understand some of this when my daughter was born. However I've been thinking and after doing the special needs mom gig for 3+ years I beg to differ with the holland poem because lets be real….it nothing like holland, holland is a nice peaceful predictable place….
Having a child with special needs is more like packing for a ski trip, getting on the plane and then being given a parachute at 50,000 feet right before they boot you out the door over the desert and toss your luggage after you. Am I right, or am I right?
But do you know what else all my thinking has lead me to see? That I am a better person, a better mother because of you all. I feel more connected then I ever have in my entire life because of you all. I don't ever truly feel alone because of you . I know I'm not the only person up at 2 am with their kid who's having strange spasms. Im not the only one who prays for the smallest bit of progress and cries pretty much everyday at some point or another over the smallest thing. I am not the only one trying so hard to balance every part of my life that I feel like I cant even focusI am not the only one because of you and that my friend . Is powerful.
When sophia was first seen by a neurology specialist we went for an MRI, the result came back that she unquestionably had brain abnormalities. They thought it was Ponotocerebellar Hypoplasia. They were very vague and kept saying we shouldn't get upset until we get confirmed testing. When I googled Pontocerebellar Hypoplasia….My world fell apart in an instant. (google is NOT our friend). I felt so alone. So overwhelmed.
But then one day I randomly search PCH and CASK on Facebook, and there they were. My people. I have not felt alone or been without a friend a single day since I was accepted into that group. I don't know if they even know how much they mean to me. When I woke up that day I was the only person I knew who had a severely special needs daughter with PCH. When I ended that day, I suddenly had 200+ mothers from ever corner of the globe who knew EXACTLY what I was going through. To this day they are an incredible inspiration to me.
You are are so diverse. so amazing. Some are you are highly educated , professors at universities, published authors, amazing researchers,artists, some hold doctorates, some have 5-6 other typically developed kids, some have more then one special needs child, some have adopted and fostered children in need. Many are full time stay at home moms. Many work jobs.You are all extreme caregivers on top of being a wife and a friend and a daughter.You all amaze me. and frankly I'm honored to be in a group with such resilient beautiful souls.
I just wanted to take a moment of your time to remind you of how incredible you are. Don't you dare ever forget that. Amidst all the crying and phone calls and laundry and feeding and cleaning don't forget that your making a difference. You are down in the trenches fighting for your child future. You matter more to that child then anyone in the whole world. never forget that.
We may not get to have the frivolous easy things the other people get. But you know what? They are the ones missing out. They have not been tested like we have. We have an awareness of ourselves that only comes from being put in our position. We have an understanding of our children so deep that it goes beyond words. Do you have any idea how many parents would loose their shit if they couldn't talk to, play with, yell at or bribe their kids? think about it. you have a level of patience that would make Mother Theresa pour you a drink. Be proud of yourselves. Because I am proud of you.
I have seen so many of you get slammed and slammed and slammed again and you get up every day and care for your kids and husbands and go to work and make life happen an you don't quit you don't stop to whine about it. you get shit done. and it makes me proud to know you. I'm proud to call such strong women my friends.
I think what I have found to be the most rewarding part of this group of amazing friends I have never met is the fact that on any given time on any day we have a place to turn with out deepest truest most un edited thoughts and fears. A place where we are met with people who KNOW exactly how you feel and wont ever judge you. How amazing is that? Friends like that are damn near impossible to find. and we have got over 200 of them. Not to shabby if you ask me.
I just wanted to say that life served us all a pretty hefty serving of shit sandwich…that much is evident. But if I have to walk down this very remote path. I am glad that i have you all to do it with. Distance separates us all across our globe. But we are connected by the small steel thread of unconditional unwavering love.
Thank you for being my friends. I am better because I know you. I really hope we can sit and have coffee together in person someday.
