In case you can’t tell from my last two posts, I’m totally obsessed with A&E’s Born This Way right now. I love when people are so willing to share their experiences for the sole purpose of encouraging and inspiring others.
I saw this little clip recently of Rachel from the show and I love it. (Click Link on FB here ) Besides Rachel and her parents being so inspiring for me, she reminds how important it is to reflect on the things and people that inspire me. Rachel’s dad talks about how being the parent of someone with an intellectual disability is just a little bit different. He talks about how things happen on a different timeline and while they are still celebrated all the same its just flat out different.
I think about how my experiences being KC’s mom has differed from the big girls. Again, we’ve celebrated so many of the same milestones; talking, walking, jumping, singing, climbing stairs, coloring a picture, etc. and I think about how some of these things have been entirely on her own timeline. Furthermore, there are still many milestones that I anticipate the big girls will reach but I’m unsure about whether or not KC will. I don’t know if she’ll get a drivers license and drive off in her first car or if she’ll have the opportunity to walk across a stage and accept a diploma as she moves on from there to her career. I know that none of these things are ways in which we measure success but some days all of these thoughts turn into a really strange cycle in my mind of ,”Yes, I want to push her to accomplish anything and everything my other girls will.” but “No, those are not the things in life that matter and no one should be measured on these scales so why I would I push her towards these things if they don’t really matter?” but then again “I don’t want people to look at or treat her any differently because of a diagnosis. KC is awesome and amazing and should never be limited. She be given and challenged with all of the same opportunities.” and then I end with, “but I truly just want people to love and see the amazing girl she is. I just want others to be kind. I want to know there will always be someone there to help her. Maybe I can just keep her home and safe with me always and forever.”
Crazy mom talk, right? All of these conflicting thoughts and emotions all mixed into one. Then I think how truly amazing it is that I still have any friends left of only “typical” kids. I’m all over the place in my own mind. I know how clueless and ignorant I was about disability and everything surrounding it before I had KC and now that I’m forming my own thoughts and options from a whole other perspective that are so very conflicting some days, I wonder how can someone that doesn’t understand our life feel brave enough to be a friend to me. Yet somehow, by the grace of God, I have them. Now, there are people in our lives that seemed to disappear and move on around the same time frame as KCs dramatic birth story but those people are few. I should add that really, greatly appreciate having those fellow moms that have similar stories that really understand me like no one else but to be honest, I’m moved at the thought that I have close friends that don’t understand. They don’t always know what the proper/non-offensive, people first “thing” is to say. They don’t know what its like to juggle therapies and appointments. They’ve have never had to watch their kid fight for life in a NICU or again later through open heart surgery. Some of these friends I’m even lucky enough to call family. These people inspire me. I think about how much easier it would’ve been to disappear on those hard days for fear or saying the wrong thing. I think about the times that KC was on lock down because her immunities were so low and how so very easy it would’ve been to just fade away and go on with their own life until things became more stable with us but they didn’t. I wonder what I would’ve done if the tables were turned. I think its really inspiring that people decided to love us right through our hard days. The love and support was not motivated by their understanding of our experience. They chose to be a faithful friends and were willing to risk doing or saying the wrong thing in the name of lack of experience because they decided it was better than doing nothing.
Thank you to those friends/family that navigate though our amazing, new normal every step of the way.
I know you saw the part about the give away, right? Because some days being a mom is hard and for those of us with a little one that requires a little extra, we would really love to gift one of you with a $25 gift card to heaven…ok kidding, its to Target which basically a little piece of heaven on earth!
***So, head over to our FB page, watch the link and be inspired by Rachel and then tag a parent you know that is raising someone with a disability that is totally rocking it and deserves this gift card. We will randomly select one winner for the gift card.***
I adore this little ball of sass and all of the wonderful things she teaches me.