5 years ago when I found out that my baby was going to have Down syndrome I frantically searched for answers about her future. What to expect and how to over come the obstacles she would face right out of the gates. I remember thinking that I did not need support of anyone else who also had a child who happened to have Down syndrome. I knew I could do this, alone and with the support of my own family and friends.
Time passed. Obstacles presented themselves and I found that family and friends did not have the answers I needed. A couple more years passed and I was finally ok with saying the words Down syndrome out loud and I began reaching out for a support system that understood what I was feeling. As I look back on those years I remember how alone I felt. Kind of like the only person in the world raising a child with Down syndrome.
Fast forward 3 years and our world is very different. It is filled with people who do understand what it means to raise a child with a disability. I need them and sometimes they need me. Our world is different and I have finally accepted that it is ok to say that. We are different. Our journeys are different and there is strength in numbers.
Our Down syndrome community often has to say good bye to our children way too early. We all live in fear that what starts as a little cold can quickly take our children from us. Simple surgical procedures can turn into life threatening situations quickly. And when our babies are stolen from us the community rallies. We all feel it.
This week 3 babies have been laid to rest and 3 families are hurting. As I watch the outpouring of love, support and sadness over social media I realize once again how important these members are to our family and our journey. This “club” is made up of fierce moms and dads who love our babies. With every club there comes misunderstandings and sometimes in the fight for what is right for our children information gets lost, but at the end of the day we are all working on paving a better future for our children. When we lay down at night we all want that same thing and that is the best for our children.
I have scrolled through the images I took for the Wojtowicz family many times over the past couple of days. Reliving the short time I got to spend with Annie and her family. My heart aches for them and for all the moms and dads that are supporting them with love and friendship during this unimaginable day . The day they have to say good bye to their precious Annie.
It makes me proud to be a member of a club that truly feels the loss and shares words of support and encouragement to not only the family but the community. These moments take our breath away and bring us all back to what is important in life. Advocacy is just a small part of real life. Loving each other and our children is 99% of what really matters.
So today as I pray for peace for Annies family as well as the other 2 families who are also saying their good byes. I am feeling a whole lot of gratitude for this large group of club members who send my family love and support every day.
Love your kids and your neighbors. OXO Katie
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