QPlease tell us more about your journey as a special needs mom from the beginning to now.
AWell my journey hasn’t been an easy one and quite frankly I probably haven’t seen all the blessings Chloe has brought until recently. I was pregnant with Chloe at 26 so the thought never went through my mind I would have a child with Down syndrome. I did have a still born baby and a miscarriage before I had Chloe so I was considered high risk. Chloe didn’t have any heart problems, thankfully so nothing like that showed up in my Ultrasound. But because of that We didn’t know she had Down syndrome until she was born. That being said we got very lucky and were blessed from the very beginning with the best doctors and therapists. As a mom I definitely did everything I could and got involved the most as I could in the “Down syndrome” community. As Chloe got older she wasn’t as verbal as a lot of other children I knew of with Down syndrome that was always a hard one for me to swallow but I always knew her needs. She always had a way of communicating to me. When Chloe was a freshman in high school again my world was rocked when she became very ill. She started to regress, have seizure like symptoms, lost a lot of weight, and started acting much different. Like she wasn’t acting like the Chloe we knew, her genetics doctor knew this and helped us through a long and tiring time of tests and hospitalizations. We finally had an answer. Not a pretty one. Chloe had iron all over her brain and they diagnosed her with NBIA which is extremely rare and not even a handful of kids with Down syndrome in the world have this. At the time my daughter was diagnosed, there were her and another child we knew about.
I think that’s when I went on shut down as Chloe’s mom. I was so devastated and heartbroken there were times when I physically and emotionally didn’t think I could function anymore. No one can tell you how it feels to lose a child or any bit of your child. The only way one would ever know is walking through it themselves and the aloneness you feel is unimaginable. Then there was school . Which I will say school was always an issue, the politics, the favoritisms, the dynamics of the IEP’s , none of that was enjoyable. Her elementary school years were good I had to fight to keep her in her neighborhood school. Which I did and won then there were the middle school years which we flew through ok then when high school came it was all downhill. Once again heartbreaking for me we went through some very unpleasant times with the staff. We ended up getting her private respite therapists on staff as her one on one aid and sailed through a whole lot easier when she was there. That made this momma heart so much lighter that I wasn’t getting phone calls all day long. She graduated from high school in 2018 and I will say that was miraculous.You see during IEP’s you discuss with a whole lot of staff,( an assistant principal or principal in the room) at length your child’s year. During Chloe’s IEP her senior year we discussed how she was going to walk with her class at commencement but she wouldn’t get her certificate of completion til she was completely done with school altogether. Which would be next year 2021, Chloe has one more year and she’s done. She can go until she’s 21. We then were told a month before commencement, when the graduation gowns were coming in and we were supposed to pick them up she would NOT be walking by our schools assistant principal. He was not gonna budge and let me tell you neither was I. As a mother again I felt defeated and really picked on that it was MY daughter there were other kids that have different disabilities that were walking. I got all my friends and we started a petition to “let Chloe Walk” called news stations called the paper and everyone I knew. Chloe did walk in commencement with her peers. But this time I didn’t feel so alone the amount of support and love from people were outrageous. I felt overwhelmed with love and I felt blessed to be a part of such an amazing group of parents that have children, their children, that happened to be born with some sort of disability come together and rally for justice, for MY child to walk in commencement with her peers. How can I explain that feeling I’m not sure I can. I still do tear thinking about however. And today Chloe is doing every day with a smile on her face and I can tell she wants to try and try to do more all the time that makes my heart happy.
QWhat has been the biggest blessing and biggest struggle that you have faced as a special needs mom?
AWell the biggest blessing like I said has definitely been the ties you build with other parents especially moms. I have found my closest friends I have made are with other moms of kid’s with Down syndrome. And maybe that’s where the struggle lies as well. The comparing “my daughter” with Down syndrome to this friend's daughter with Down syndrome or that one. It all can be a real huge struggle for a lot of people. And it definitely has been for me. Growing up in a community where Chloe definitely wasn’t the only girl with Down syndrome or child for that matter was a blessing . I would say it also was part of my biggest struggle. Chloe is very shy and unsure of herself. So she wouldn’t talk a lot if she knew people didn’t understand her. Or just in general sometimes she would stop communicating and when she got sick her speech did go way way down. I felt so defeated, why my child was the only one who didn’t talk. It has been a struggle always to get her to talk with me.She can understand me completely but not get the words out she wants to use and I can tell she is thinking. She answered me just the other day when I was expecting her not to, she surprised me so much it just made my day!! Really it made my life you know what I mean? Both my sons could win their race in their track meet and if Chloe said a whole sentence in that same day, I might be more happy about that one sentence! It’s just so hard to make people understand. The simplest of things that so many of us have every day we all take for granted. Not everyone can communicate like the majority of us can and it surely doesn’t make them less than. It makes it more than when they do because they have to try that much harder. And it makes it that much more sweeter. So really the biggest blessing and biggest struggle for me would be one in the same.
QWhat advice would you give to mothers who are feeling down and are struggling with their child's special needs?
AOh wow, where do I start every child is different and every family dynamic is different so one person's story will look totally different from yours. So for starters don’t compare your child’s progress to another child that has special needs. Have faith in YOUR child and when you feel like giving up for a while, do, then when you come back from a break, you have more fire in those momma veins. Give yourself LOTS of grace because undoubtedly you will feel like you’ve failed as a mom time and time again. But you really haven’t it’s just normal, natural human emotions. And if you have all these feelings, congratulations you are a fabulous mom, every mom wants the best for their child, disability or not. So you need to see beyond the diagnosis to your child like I said before every child is different that has any sort of disability because every child is different period. So surround yourself with good people that build you up, are true friends and love you and your child for who they are. There are always going to be insensitive, uneducated people out there who will say negative things, give you and your child those “looks'' but our job as a mom is to educate people and help them look at things differently. And on occasion give them “the look” back! But seriously the best advice I can give you is give yourself grace. Plenty and PLENTY of it. Being a mom is a special needs child might be one of the hardest jobs, but it’s also one of the most rewarding . When your child does something they have worked so hard at for so long it’s the best feeling in the world and that’s what you need to look to that next small accomplishment no matter how small it is. And know other moms have walked this path before you with far less resources. We are blessed very much to be able to connect with other special needs moms now with so much out there. I wish you all the best xo
QWe absolutely love hearing about Chloe's victories whether they are big or small, what are some of your favorite moments that you have shared together?
AJust like almost every mother and daughter we have always enjoyed the shopping sprees before school every year together. Even when Chloe was young she loved clothes shopping and it was always our special time together. Dad would take the boys and Chloe and I would have our special time. Every family vacation I can remember was a special time with the whole family as the kids grew up. One in particular was going to Busch Gardens and riding a really big roller coaster with Chloe for the first time. She loved it and was scared at the same time, or course right! I’ll never forget that was the first time she said an inappropriate word, but appropriately! That being said, she can’t ride roller coasters now like she did then. After all Her medical problems arose we had to switch all of Chloe’s specialists to Cincinnati Children's Hospital. Now that is always a special time just for us,we sometimes stay at the Ronald McDonald house or other times we just stay at a hotel and do different fun things.We have went to the Newport aquarium, Cincinnati zoo, we discover different shopping areas, it’s nice because it’s always our “special time together ‘and I always try to make it fun for her even when there’s not pleasant appointments we have to go for. Obviously her open house for her graduation commencement was very special for us, after the fight to let her walk. But we do have one more year this year of school and you can bet I have something super special in mind for her when she finishes. I do have another son graduating this year so maybe once he goes off to college I’ll have a girls getaway planned!