Wednesday, October 15, 2014

Dear Matthew...

"Before you were a parent, what did you expect motherhood to feel like?  And how is it different now that you live in the world of parenting a child with special needs?”
These were questions that I posed to my colleagues last week in preparation for a conference we presented dedicated to parents raising children with special needs.  

Here are some of MY answers – along with a thank you letter to Matthew:

Notice his flapping hands - he is SO excited!
I figured that being Matthew’s mom would include playing soccer or a game of catch in the backyard before driving him to his soccer practices or baseball games.  I didn’t picture that the driving we do together actually has no destination.  Matthew’s favorite thing to do together is to drive around looking for the garbage truck.  I didn’t know how heartbreaking it would feel to drive past those athletic fields packed with other people’s kids playing on teams while we search for the All Waste truck.

Matty at the amusement park this summer - do you think he's enjoying it!?

I thought that being Matthew’s mom would mean summers that included day trips to the beach or an amusement park – I pictured of course, that we’d bring his friends along on our excursions.  I didn’t realize that spontaneous would no longer be a part of my life – it’s all about keeping to the safe and predictable routines now – and that friends for my son to invite to the beach are hard to find.

Stressed out face - vacations are stressful for Matty.
I thought a family vacation to Cape Cod and Martha’s Vineyard would include family bike rides, trips to the ice cream shop, buying souvenirs and relaxing on the beach.  I didn’t know that our family vacation time would be spent divided – one parent with one child at a time -  not buying souvenirs or ice cream in those shops, but rather asking what time those shops open and close each day.   This information is SO important to Matthew.  It gives structure to his unstructured vacation days.   Let’s not forget about finding out what time the streetlights go on at night – this is another activity that brings Matthew great joy and something that I would never imagine doing on vacation.
...and Matty is HAPPY!
Streetlights go on...

I pictured being a parent would mean speaking to my child’s teacher for parent conferences two times per school year, and perhaps a handful of other times.  I didn’t know I would be in  daily contact with my child’s team of teachers and therapists (special education, regular education, PT, OT, speech, school nurse and school psychologist…did I forget anyone?) to touch base about seizures, behaviors, protective holds, educational concerns and modified curriculum.  

Dear Matthew,

Before you came into my life, my view of the world was so narrow.  I was all about the product, not the process - the destination not the journey.  Thank you for helping me understand that it’s OK to drive around without a destination in mind.  That it’s a good thing to just enjoy the time we spend together driving around looking for the garbage truck.    Journey – not Destination.  Part of our positive energy comes from this journey we are on together. 

Our days at the beach don’t have to be filled with friends and social conversations.  Experiencing your pure joy when you watch the ocean waves crash over and over – each wave to you is just as exciting as the first one you saw – sending you into your excited “triple hop” – isn’t that what every mother wishes for?  To see her child so happy that he literally jumps with joy?
Matthew and Nana at the beach.

Our journey takes us to places that are difficult for me – like doctor appointments where new diagnoses are given, school events watching typical peers interact with each other the way I pictured you’d be able to one day, and simply having to admit and accept that I need more help from professionals to learn how to handle your behaviors at home.   Going to these difficult places is necessary, because it’s for you.  I wouldn’t go there on my own – you have held my hand each step of the way and made me stronger – able to take on the next part of our journey.

Matthew, thank you for teaching me to be brave and strong.  To be honest and stand up for you and your needs.   You’ve given me the strength and courage I’ve needed to teach others who are not a part of our journey, what it is like to travel the journey of life with disabilities. 

Thank you – for showing me what is truly important in life – it’s the journey, the process  - not the destination or end product.  Everyday I learn something from you – but the best thing you have taught me is that on our journey, we will continue to get to new places if we both feel happy and loved.   I am so lucky I get to be your mommy.