Since my son was born four years ago with an unexpected diagnosis, I have had a lot of time to really dig deep into my being. I have felt my heart change. I am a totally new and different person than I ever was before.
When I say my heart, it has nothing to do with how much I love my child or how much I love my children. You see my child with special needs is not my first child, he is my third. I love all my children the exact same amount, but when we got the confirmed diagnosis of Down syndrome about four days after birth, I knew I was going to be different from then on.
I don’t like to say that I am different from all the typical moms out there. I am also and was a typical mom first. Now as an added bonus I get to be a special needs mom as well. It is not easy, but it is also not as hard as you may think. If you can, think back to a time where something that happened to you, completely changed you and changed your heart. My moment was when Ronin was born.
With our experience and life’s adventures so far, my heart has been revealed right before my eyes. I hope I can provide a small glimpse in my story for I hope for more understanding, compassion, and celebration for moms who have children that are differently abled. The heart has 4 chambers physically but has an unlimited about of chambers emotionally. Here are 4 of my emotional chambers.
The Sensitive Heart:
I am sensitive to people that stare at my child. I am more sensitive to people that stare at him without a smile. But Ronin’s got this, he will tell you straight up to “No look at me.” To always feel like people are staring at your child bothers me to my core. I cannot go to church anymore as the worship music makes me cry uncontrollably. Life is a blessing but you also wonder why you were given this life.
Speaking of tears; when the day is hard, you don’t get the news you hoped for, you drive past the hospital you gave birth at, your child who is speech delayed, says a 7-word sentence of all potty words and when he graduates from physical therapy; you also cry uncontrollably without warning. Happy, sad, mad, excited, and every emotion under the sun can trigger my sensitive heart. I definitely do cry more but not all for horrible, bad reasons. The tears dry and you continue to trek on and move forward.
The Warrior heart:
Educate, Advocate and Celebrate. I will always, always, always be there at the front lines for my son. I want to bring knowledge, make social change, and then rejoice in everything we have accomplished. Whether it’s at an IEP meeting, at the grocery store, in an online comment, or at Capitol Hill, I will do whatever I can to bring awareness for acceptance and inclusion for every single human being on this earth and for that little piece of my heart named Ronin. The time is now, Let’s Go!
The Cautious Heart:
I have always been the type of person to plan everything out. But I feel I look way too far in advance sometimes and play out every scenario possible. My son will be in Kindergarten next year. I am already on the edge of caution about the birthday party situation. Will he be the only kid not invited to a birthday party in his class? (Tip for readers: If you are required to invite everyone in the class to your child’s birthday party, take an extra step to make sure the special education students in your child’s class are on your list). And his birthday- is it going to be like the ones on the news where no one shows up and local police and fireman come to try to make their day special? It makes me scared and unsure about the whole party situation.
I will also be cautious with everyone’s intentions around my son. I am hoping he will make true friends but don’t want the kids around him who want to just be the “cool person” by being “friends” with the “special need kid.” And I’ll be on edge if my son is ever the school’s mascot. Red Flag.
The Reassured Heart:
Reassurance is the removal of doubts and fears. Will I always have doubts as a special needs mom, sure. Will I always have fears as a special needs mom, sure. Everyone has fears and doubts, if you didn’t I’d be a little worried about that. What is reassured daily; with every tear, smile, word, laugh, connection, resource and people that come into your life is that I will get through each day. The day may have gone well but it also might have been not so good. What matters is that you made it. And good or bad are ready to learn, grow and love in the next day of your adventure.
An overall description of my heart is “Renewed.” I have no idea what my life may have looked like if I was not a special needs mom. When I look into the mirror, I don’t ever imagine my life without Ronin or what our story might have been. After my tears have dried, my eyes do open and begin to see and I trust the life I was given as a special needs mom.