I told my oldest son awhile back that I was going to write a children’s book about “Karsyn goes to Pre-K”. A book that can be read to preschoolers explaining Down Syndrome and showing that kids with DS are really not that different…..to which he replied, “what’s going to be your sequel? Karsyn drops out of Kindergarten?”
We both laughed because that was a true statement. She didn’t make it past December in Kindergarten.
Another time in my life when my plans went nothing like how I wanted them to go.
I choose to believe that God knew my plans were going to fail. He was there.
He doesn’t always save us from the heartache but He is always faithful to pick us up, dust us off and send us on another path. He promised to work all things for our good.
I don’t think you ever forget “traumatic” events in your life. The ones that shake you to the core. From time to time you replay them in your head and you still feel the pain in your heart.
The day Karsyn was born will forever be a part of who I am. I kind of wish I would get to the place where I’d forget. I wish even with her diagnosis that her birth story would have just been a celebration. But the reality is it hurt then and it still hurts now.
The sting of the reality that my baby is “different”. The moment that my doctor gathered us around my hospital bed and in the kindest way possible broke the news to us. I can still feel the pounding of my heart and the tears swelling in my eyes.
The grief and fear were overwhelming.
But over time the grief subsided and we were overwhelmed with joy instead. I love her to pieces. Anyone that has ever met us would never question that.
Everyday you accept that the things she can’t do pale in comparison to the things she can do. She taught us to stop and enjoy the little things. To look for the miracles in everyday.
We made it through the fear of the newborn days. We waited patiently for her to build the muscle needed to hold her little head up. We watched her struggle to rollover. I screamed the first time she sat up, she did a full split and pushed her way up. She eventually crawled, then walked and now she’s running.
Believe it or not I survived dropping her off to school as a little 4 year old baby to a total stranger I had only met a few times. She couldn’t say anything, she was still in diapers and couldn’t even walk the whole way to the cafeteria and back without tiring out. (Or just wanting to be held)
That precious teacher who loved her like her own will always hold a special place in my heart.
Karsyn gave us the courage we needed. She thrived and learned so much.
I had high hopes that school was going to be a great and exciting journey for her. She was going to break the stereotypes! She was going to be the one who changed the way people viewed Down Syndrome.
We were blessed with a great school and everyone loved her.
I think I went into the year with the same expectations that I walked into the hospital with that day.
But things didn’t go like I had planned.
Maybe my high expectations were a bit unfair to everyone including Karsyn.
After a few months, I had another meeting that changed me. This time it was gathered around a little desk instead of a hospital bed. My heart started pounding and I could feel the tears swelling before they even said a word. I’d been here before and I knew what was coming. It wasn’t my Doctor pointing out her almond shaped eyes, her “thick” neck and the crease across her palm instead it was a teacher pointing out similar facts. Karsyn is different. She was not keeping up with her class. I know it broke their hearts as much as it did mine. I wish I could say I was prepared to accept the news this time around but it didn’t get any easier. Just like the day she was born the rest of that meeting was kind of a blur. I got stuck in that dark place of grief.
I knew they were right. Academically she wasn’t anywhere close to the other kids. I tried to agree with them but my heart said just give her a chance.
I do not doubt that they loved her and wanted what was best for her. I wanted the same thing!!
I just wasn’t ready to accept where she was ultimately headed.
Someone asked me, “what do you want for Karsyn when it comes to school?” I guess the true and honest answer is…I want her to be “like every other kid”. The same thing I wanted for her the day she was born. I want her to run and play with no limitations. I want her to sit and learn with her friends. I want her to express her wants, desires and feelings. I want her to be fully included.
I know there is not an easy answer and maybe what I’m searching for doesn’t even exist. I just know how her being in my life has changed me. I’ve seen her change my kids without them even realizing it. I watched her in a reverse mainstream class for two years leave an impression on the kids around her. She was teaching them compassion, empathy and acceptance. I know if you asked her teacher she would stand up and say she added way more to her class than she ever took away!
I really never cared about academics. I want her to learn to read and write but that has never been my focus. I never wanted it to be but I found out quickly that academics is all that people see on paper.
Unfortunately, it defines who you are.
It doesn’t show you the amazing little girl I see. It doesn’t let you see everything that she has to offer that can’t be graded.
It’s not the school’s fault. It’s the society we live in. We live in a broken world with a broken system. We all look for what people have to offer on paper. Grades, behavior, awards and achievements. It’s hard to look beyond the surface and see what’s really there!
I don’t know where Karsyn’s place is for her educational journey. I could have this all wrong. I am very new to this!
Sometimes reality is hard and it takes awhile to come to terms with it.
Eventually I will get there..
I’ve come a long way in 6 1/2 years and I’m sure in another 6 1/2 years I’ll look back and I’ll be proud at how far we’ve come.
I’ll continue to be forever grateful to the people that God puts in our path with understanding hearts and patience as we grow.
Karsyn was not given the “best” mom out there with all the answers and the mom who always makes the right decisions.
Does that kind of Mom really exist?
We are all just trying to do the best we can driven by a fierce love to protect and provide the best things for our babies.
What I’ve learned is Special Education is complicated! I take so much for granted with my “typical” kids.
The next time you see a student with special needs cross the stage and receive their diploma, stand to your feet and applaud them! They overcame many obstacles to achieve their goal!! And then go find their sweet Mom and give her a BIG hug!! Because she is my hero!!
Karsyn will continue to teach me like she always has!
She’ll find her place and she’ll bless everyone with her vibrant spirit.
The girl really is amazing!
Update..Karsyn is currently enrolled in school!! She didn’t stay a “drop out”! 😊
The Best is yet to come….
Run with Me 