My Life’s EXTRA Curveball
Bases are loaded, I’m up. This pitcher facing me is the best at fast curveballs. Deep breath. Focus. Believe. I can do this…. I have no choice but to knock it out of the park.
As a mom to three and as a mom to a child with special needs, my own health is vital to me. I do understand that much is unforeseen, but the science of genetics and your family history can paint a picture of what’s to come for some of us. My arch nemesis’ are heart disease and breast cancer. Loaded family history. My heart issues were discovered in my early 30’s and I see Cardiology annually to stay heart healthy. As for my family history and having the ATM gene, the breast cancer part of my journey, I decided to be proactive recently.
At the end of March, I went under for a preventative double mastectomy. It was an easy choice for me. Not only do I have memories of this ugly disease, but I have a lot of work to do here for Hudson’s future and my time is already stretched thin. Obviously, I was on the right track and had no idea that my preventative surgery was actually removing cancer I already had. I am 46. My mom, grandma and aunt were all 50 and over; not news we were expecting. Carcinoma: Positive.
When the news came in, I already had been healing for a week and still had two drainage bulbs as my gory accessories. With the new diagnosis, it’s likely more surgery from the positive margins left behind. And my hope of not needing an oncologist, I was now hearing that I need two. This is all fresh and I still have no idea of what’s to come, but I believe that God uses us to share the message He provides durning good and bad times.
Here’s what I know so far: I will be fine. I will not let this slow me down. And my favorite part, I will lead by example to my children of how wonderfully God designed me and fight for me and for them. God does prepare us and I pray constantly that this isn’t a way for me to prepare for any more oncologists in our future, but no matter I will face any and all challenges ahead with the same “I WILL KNOCK IT OUT OF THE PARK” attitude. I have no choice.
Sharing this so publicly is to encourage kindness. We all have life’s curveballs that many have no idea about. A smile can a long way. A phonemail or even a text can brighten a day. The friends you have in your communities that have children with Down syndrome often feel alone. Uninvited to parties or playdates, discouraged from outings to not hold other friends back from fun, they are sitting alone in their cars while waiting on therapy and so on. It shouldn’t take a diagnosis of cancer to reach out, they need you now. Please know that I am crazy happy for all who have shown the greatest love and support, but my cancer I will fight and it will be gone. Hudson was born with an extra chromosome that won’t go away and he needs the love more than I do. I am accepted in society. But having a child with special needs has sadly been lonely. Let me decide what we can and can’t do…. To be invited is the game changer for all who are on my path. Down syndrome has opened a beautiful door to new friendships that I would be sad to not know now, you should get to know these wonderful people, too.
Many extra big acts of kindness are found in many ways, like nominating Prom Kings and Queens with Down syndrome or cheering at the Buddy Walks in your area or getting your school or office to wear crazy socks for WDSD. We love all this, we do, but being invited to birthday parties, sleepovers, to the movies… these acts are way more inclusive and impactful on our children and us, too. Having people who see our children’s abilities in their learning environments is encouraging and provides hope. We already know that are precious children, so that is great, but as a teacher, we need you to push them as you would a typical child, like your own child. Churches, find your own “Buddy System”. See that every child has the opportunity to know God. However it works for your church, make it happen. The parents and the kids in your disability community need to be a part of yOUR community. That OUR is capitalized for a reason. It belongs to both you and I, together. We can work with anyone who wants to learn more and do better, just ask.
One thing I hear a lot is about children and their curiosity. If your child has ever embarrassed you in public by asking a question loudly about a child with a disability and you hushed them, you missed a beautiful opportunity to teach them. Maybe its because you aren’t educated in the disability to share? Or maybe you think it will upset the person or momma hearing you? Or maybe it’s that you don’t think you have the time to “get into it”? No matter the reason, your child is asking and we would love for you to teach them or ask us to help. I am not educated in all disabilities, I am well educated in kindness. A generic answer can suffice, “God made her/him, just as He made you… both very special”. Or you could say, “lets go talk them and learn together”. To hush your chid is awkward for everyone. It leaves us wondering what your real thoughts are or question why you don’t want your child to learn? Be kind. Always.
Let me educate you about Down syndrome:
A person born with Down syndrome has an extra copy of the 21st chromosome. This means that they have a total of 47 chromosomes. Most people born have 46 chromosomes total. This one extra gene causes them to develop differently.
Children still look like their families. They may have almond shaped eyes, a flatter profile, larger tongues, sandal toes, sparkles in their eyes called Brushfield spots, shorter arm or legs, but they have a mom and a dad that they get their genes from.
Down syndrome is not contagious. You are born with the extra chromosome, No one know how this happens, but it is a miracle that we have these wonderful people in our communities.
Larger tongues can make speaking clearly harder for individual with Down syndrome. The ability to speak truly depends on the child, but friends and family have no problems communicating however is best with them. Thats why learning and not hushing is so important.
Most individuals have low muscle tone. This isn’t to say that they aren’t strong, it’s saying that the control to crawl, walk, run and more is often a more difficult task. But many are able to do all these hard tasks in their own time.
People with Down syndrome are so loving. Hugs and acceptance go together. To be afraid is silly. You’ll miss out on this love if you shy away from them. Give them a chance to be your friend, I know they’ll give you one.
Down syndrome doesn’t have a number system. You are born with it or not. Many challenges face our friends, especially their health. This varies from child to child. Some have heart defects at birth and some don’t. Some have the battle of cancer and some never do. Some have autism and many don’t. Just like everyone born, we all have our own journey, no two alike. Similar paths can be found, but none are cookie cutter.
Talk to your children Teach them to not be afraid. God created us all. Period. No mistakes. Take every opportunity to raise the next generation to be more inclusive. Diversity is talked about daily, this includes my son. Kids and young adults can use “Down syndrome” as a rude comment or as a joke. This hurts. If you hear ANY child or person belittling one of God’s children, be a voice for change. We shouldn’t have to fight all the battles alone.
I’m fighting for him, like my cancer, I have no choice but to knock it out of the park! My life’s EXTRA curveball can’t stop me.
Bases are loaded, YOU’RE up….