I just finished reading this book
written by a woman who unexpectedly had a child born with Down Syndrome. The book is about the first year of her
journey as a special needs mama. She
writes vividly about the pain, disappointment and grief she experienced the day
her child was born. It’s hard for me to
read these kind of books because it catapults me back to the days following
Jackson’s diagnosis. Those feelings are
forever etched on my heart and it’s a painful journey back. On the other hand, it is healing to recall
that dark period and realize how far I have come. While I think I will always have a wish for
Jackson to have a whole, healthy brain, I no longer grieve for the child I
thought I was going to have. I look at
Jackson now and I am so proud to be his Mama.
He’s amazing. I know strangers
sometimes look at us, me strolling him around in his wheelchair, and I know
they feel sorry for me. I see it on
their faces. I always smile at them
because I feel sorry for them. They will
never know the awesomeness of the journey of raising a child with special
needs. It’s a roller coaster journey
filled with more emotions than most of us know we even had. It is the best thing I will ever experience
and it is the worst thing I will ever experience. All packaged up in a beautiful little boy who
thinks the sound of an air compressor is the funniest sound on earth and will
roll on the floor laughing about it for 15 minutes. I have shed too many tears to count, I’ve
experienced physical pain in my chest from loving him so much, there have been endless
laughs, heartbreak, and an indescribable joy.
All of this Jackson has brought me.
It is just the beginning of how this kid has changed my life.
A little over a year ago I heard
about this class on advocacy leadership that the Arc of Spokane was offering. I signed up because I wanted to learn more
about resources in our community and I wanted to become a better advocate for
Jackson. What I didn’t foresee was that
it was going to change my life. As the
class progressed I learned more and more about not only advocating for those
with disabilities, but I learned about those with disabilities. It’s hard to advocate for someone or a group
of people when you don’t have clear knowledge about their lives and
struggles. I realized that although I had
a child with disabilities, I really didn’t know much about people with disabilities. I’ve spent the last year reading, studying,
and asking questions so that I can better educate myself on what programs and
supports people with disabilities in Washington need and want. In my effort to educate myself, I think I may
have just found my calling and a purpose.
Something that helps me make sense of why I was given a child like
Jackson. Or at least has shown me what
is possible when it seemed for so long that everything was going to be
impossible.
During this class we spent a
weekend in our state capitol, Olympia. I
had never been to Olympia before nor had I seen our beautiful Capitol
Building. The first time I walked into
that building I felt like it would become a part of my life. And it has.
I spent about 5 days over the next couple of months walking the halls of
the Capitol, meeting with legislators, listening to amazing speeches and in a
truly amazing opportunity got to testify at a Senate hearing. Over the last few months my involvement in
advocating for disabilities has grown. I
have been working with the local hospital to try and get a program implemented
for new parents of children with disabilities.
When your baby is born with disabilities it is a confusing and devastating
time. Having someone who has been in
your shoes, a support system, and can help you access services your child will
need can be a saving grace. I want to be
that person for local parents. The
hospital seems to like the idea too.
Hopefully in the next couple of months we will make my wish a
reality. I have flown over to Seattle a
few times to participate in legislative and community meetings with the
Washington State Developmental Disabilities Council (DDC). I signed up to be part of a core planning
committee member to start up a special education parent advisory council with
Spokane Public Schools. I am also working
on creating a parent support network for those of us with special needs students
in the school district. But the most
amazing opportunity I have had over the last few months was getting appointed
by Governor Inslee to the Board of Directors for the DDC. I can’t wait to begin working on the Board
and really take part as an advocate for people with disabilities in our
state.
When I look back at the last year
of my life I am awestruck at how much I have learned and how important advocacy
has become to me. All I sought out to do
was become a better advocate for Jackson.
Now here I am advocating for so many others. The best part of all of this is that I wouldn’t
be doing any of this if it wasn’t for a little boy named Jackson. He has given me yet another gift. Something I will forever be thankful to him
for. I hope I can make him proud. Joseph Addison sums it up best when he said “The
grand essentials to happiness in this life are something to do, something to
love, and something to hope for."
