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."