Crystal Kostick

@crystal-kostick | contributor
Crystal Kostick lives in the Denver, CO area with her husband and two awesome kiddos who run her ragged most days. Her oldest child, Madeline has been diagnosed with HIE (hypoxic ischemic encephalopathy), Cerebral Palsy, Epilepsy, and Pure Awesomeness. Despite some of these extra challenges, Maddie & Co are not only just getting by, but are living life to the very best of their capabilities...keeping the HOPE alive.

What This Yellow Chalkboard Taught Me After My Daughter's Birth Injury

When I was pregnant with my first child, the whole world was one giant cliche of unicorns and ice cream. I was so grateful and lucky and happy and excited and never once did I stop and even consider anything bad happening. Things were great! Everyone was healthy. This is what I always wanted. I obviously spent an exorbitant amount of time planning and decorating my baby girl’s nursery, agonizing over every little detail until it was just perfect. Because that’s what you do when you live in the la-la land of first-time parenthood. Part of that decor was a small little chalkboard inside a fancy yellow frame that I would place on the side table next to our rocking chair, where I would undoubtedly spend many hours snuggling my beautiful babe and basking in the glow of new motherhood (ha!). The week I turned 37 weeks, I painstakingly wrote out her name on that chalkboard, making sure it was just perfect. We were ready to meet our little girl! But then things changed. I’ll save the gory details, but during my labor and delivery, my sweet baby sustained a severe brain injury. She lost oxygen and blood flow to her brain in an event called hypoxic ischemic encephalopathy (HIE). We didn’t know the specifics at first — she was in the NICU with seizures for a few days before we had an MRI done and found out the extent and the meaning of the damage. The whole medical team brought us into a room, sat us down and told us that essentially our feisty little redheaded girl would likely not survive much longer. If she did, she would have a very low quality of life and probably wouldn’t ever meet any milestones or even recognize us. We were obviously devastated. In the midst of this overwhelming grief, later that night I found myself awake, attached to the breast pump (instead of my baby) in that perfect nursery we had prepared. I looked over through my swollen and blurry eyes and saw that yellow chalkboard with her name written on it. And I suddenly had the realization… I might have to erase it. The thought broke me. I don’t know if there was much left to break, but the very last piece of my heart shattered right then and there. The days continued to creep along and we soon were able to bring our baby home. We were terrified and traumatized and barely functioning but there we were. Home. All three of us. Time passed and our girl continued to make progress — on her own timeline and in her own way, but it became clear to us that she was going to stay and fight. While she definitely has her fair share of challenges, our girl has blown those early predictions out of the water. We still live a very different life than we had envisioned, but it is a good one — full of laughter and joy. I have done many things as a parent that I never expected I would. But one thing I have never done, more than seven years later, is erase her name off that chalkboard. It may be a bit smudged and faded, but I don’t think I will ever be able to wipe off those words. In my darkest time, I thought I would have to, but now I can see that my Madeline Jane will not and cannot be erased. No matter what happens, her soul is just too important.

Kids Who Use Wheelchairs Are Just as Worthy as Kids Who Walk

My daughter is 6 years old, she has cerebral palsy and some developmental delays. She recently began walking on her own — yay! She still has a bit of a labored gait and doesn’t walk like a typical kiddo of her age, but she’s doing great and we are so happy for her! However, one thing I have noticed and am a bit unsettled by is now that she is out walking around in public, everyone wants to talk to her! Like, literally… almost every person that passes us smiles or stops and says something to her. And it’s great — she’s cute and obviously working hard and most people have been really supportive. So, why does this bother me so much, you ask? Well three months ago, when we were out in public and she was in her wheelchair, we would get zero comments… zero interactions, zero supportive words, maybe an occasional smile, but that’s it. The difference is appalling. It’s the same adorable little girl, same fun personality, same willingness and yearning to participate in society. So why the huge difference in others’ reactions? Why am I sitting here, so incredibly shocked at the amount of kindness and support we are suddenly receiving from strangers that was never there before? Why am I so sad about this in the midst of a really happy and exciting time for my child? Because not every child will walk. It has taken us six years to get to this shaky point, and even now, she may still use her wheelchair. Not every child will be able to walk independently. Some will always rely on a chair, and they deserve so much more from our communities than what I have seen. So, here is my PSA for the day: Talk to kids in wheelchairs! They aren’t to be scared of — you will not hurt them with a smile and a nice word. In fact, you may just make their day a little bit brighter. Isn’t that the point? They may not respond, but that’s OK. They and their parent will feel the love. If you don’t know quite what to say, think about what you would say to that kid if they were walking like everyone else, because guess what? They’re still a kid too… just like all the others. So treat them that way. Talk to them that way. Wheelchairs shouldn’t be scaring you off. Wheelchairs should not be a reason to skirt your eyes away. It should not be a reason to avoid connection. If anything, these are the families that could use the support the most. So help take away a bit of that feeling of isolation. Support them. Cheer them on. Because they are every bit as awesome and deserving as any child who’s walking.

Dear Teachers, Please Presume Competence When You Work With My Child

“Oh, she is just so sweet!”“What a precious little angel you have!”“Is she always this easy-going?” Umm… nope. Nuh-uh. No way. It’s laughable, really. If you spend some time in our home and get to know my lovely little girl, these statements are so far from our experience. And yet, these are the type of comments I hear most often from teachers, aides, principals, etc. Well guess what? They are all being played. Now, before I continue, because the internet likes to mom-shame and some people take things way too seriously, I feel like I need to interject here the fact that I love my kid. She’s probably the coolest one alive and I am basically obsessed with her sheer awesomeness. However, that being said, she is no angel (but is any child, really?) This girl is so many things: smart, sassy, goofy, mischievous… but sweet, angelic and precious are not the first things that come to mind. And I honestly love that about her. My daughter sustained a severe brain injury during her birth and as a result has been diagnosed with hypoxic ischemic encephalopathy (HIE), cerebral palsy, and epilepsy. She has significant delays and obviously needs some extra support at school. But she is extremely bright and her levels of manipulation and impishness are right on track for her age. She is only 5 years old, but she has already caught on to the idea that she is cute. Like, really cute. She is cute, and she has a disability and people feel sorry for her (insert eye-roll).   Please, make her work! She is not at school to be cute for you. She is not there to learn new and creative ways to get out of working. And she is definitely not there to watch other people doing everything for her. It’s not OK. Yes, she is cute. Yes, she has a disability and will need extra help in some areas. But I need to know, as her mother, that you are seeing her potential and helping her to reach it. She is very capable of many things and I need to know that you know that. Sending your child off to kindergarten is hard… for any mom. But for a mom with a child who has disabilities, it is downright terrifying. And this is my biggest fear. That she will be coddled and bombarded with help. I want my daughter to have as close to a typical experience as possible and I want her to learn. School is not glorified daycare. She can do hard things. Repeat after me: she can do hard things! It may not look hard to some, but all the while, she is learning about resilience, toughness and persistence. So please, be tough on my kid. Don’t let her get away with not trying. She doesn’t have to be able to do everything correctly, but make sure to give her the push and the time to make the effort. Presume the utmost intelligence and competence and give her a sturdy platform to stand on — just like you would with any other child. I want her to be educated and be the best possible version of herself. I may not know just what that looks like, but I sure know what it doesn’t look like. Sincerely, A “mean” mom who gives a whole lotta craps.