Struggling today…..perhaps I should keep it to myself; but my heart just aches.
I went to bed last night knowing that today was going to be World Down Syndrome Day; 3/21 (a day recognized for celebrating individuals with three copies of the 21st chromosome).
I knew I would wake up this morning with everyone celebrating Down Syndrome; which I totally believe should be celebrated. I think these amazing people should be celebrated daily but being raw and honest here; sometimes a disability is difficult to celebrate. Awareness is being brought to people with Down Syndrome one day a year but the remaining 364 days a year are a fight for so many of us. We fight for acceptance. We fight for normalcy. We fight for services. We fight for a plethora of medical issues and insurance coverage. We fight ignorance. We fight….all day long…..and at times we get very weary. Now, with that said, I know some people who have kids with Down Syndrome and they don’t have the same issues. Some of our special kids don’t have the plethora of medical issues that Hannah does (and I am so thankful for that for them). So many kids with Down Syndrome are in school, doing fabulously, working, and making their mark on the world. But, there are some of us where that isn’t a reality; where the differences between our child with Down Syndrome and a typically developed child are VERY different. The slogan for World Down Syndrome Day is “More Alike Than Different.” I get it; I truly do but there are days (often times) where I don’t see that. I see the vast differences and I grieve those.
I think I see the differences more now than ever. As Hannah gets older I see what other kids her age are doing and what she still cannot do. I grieve the fact that I will never have that friendship with her that so many other moms have with their kids as they get older. We won’t be going to see movies, getting manicures and pedicures and we won’t be going shopping together. We won’t be taking family vacations to fun spots….heck, for the past 4 years we haven’t even been able to take her out to dinner. I am still bathing her and taking her to the potty. I am still reading books before bed, tucking her in, saying her prayers and standing there as she falls to sleep. I know that our circumstances are much different from most; even our sweet friends who have kids with Down Syndrome. We are in a very rare category with PANDAS, Autism and Hannah being so immune compromised. Heck, we are even in the less than 1% of kids with her heart defect that have had 3 open-heart surgeries. Most kids with her heart defect only have 1 open heart surgery. So, you see, things are a little more different for us than the “typical” chid with Down Syndrome. So, my grief and heartache is quite a bit different from most.
I hesitate even posting this blog post. I mean, it sounds like I don’t appreciate what this day means for all kids with Down Syndrome. I do, I promise I do. It is a step in acceptance, a step in spreading knowledge and a step in the right direction. I look at Hannah and even though I do see ALL the differences (and there are a lot of them) I also see my greatest gift and biggest blessing. I never dreamed a little baby with Down Syndrome could teach me so much. I never imagined as she grew up she would still be teaching me about life, what is important and how to reach deep down and find strength and perseverance you never knew you possessed. Even through my heartache and grief I can still see purpose and find joy. I can still find things to be thankful for…..they might not be the things most moms are thankful for but I have many.
Today, I will celebrate Hannah and all kids with Down Syndrome; I might do it through my tears but I am grateful. I am grateful I was chosen to be Hannah’s mom even though it wasn’t the journey I expected. I am grateful God has taught me so much through her; lessons I probably never would have learned without her. Yes, it took a child with Down Syndrome to knock me down from my self-righteous, selfish, materialistic pedestal (trust me on that) to show me life was about so much more. Life is about caring for people. Life is about loving people; even those very different from you. Life is about doing all you can to point others to Jesus. Life is about EVERYTHING except yourself. Life is about taking baby steps, finding your journey and embracing it (that has been the hardest part for me). Life is about so much more than any book, education or job could ever teach you. No amount of money, big house, nice car, dream job or higher education could show you the real meaning of life. Those are just things/possessions…….life is about caring, love, loss, grief, finding joy in your sorrow and purpose in your pain and sharing that with others. Life……the important part all taught to me by a little girl who possesses an extra 21st chromosome. So, because of her, even through my grief and sadness I will celebrate; because you see, Hannah is worth celebrating today and every day……
Until next time…….