I Will Raise Awareness Quietly

I don’t readily embrace the title of special needs mom. Some moms I have met along the way wear the title with fierceness. They are the voices that raise money for cures and design memes for awareness. They truly believe that cures will be found. During awareness weeks, they wear purple or red or blue or any other color of the rainbow. They start hashtags to get onto Ellen’s show and loudly speak of the struggles and celebrate the accomplishments of their children.

I prefer to mother more quietly. Mothering Reese is caregiving in the truest sense of the word. There is no discipline involved, although I would love to be scolding a naughty boy. There is no picky eating to contend with daily, but there are tube feedings to hook up and formula to make. I don’t fight medication administration, but there are so many medications to manage. There is no potty training, but there are frequent diaper changes. There is no finding a babysitter for an occasional night out, but there is finding trustworthy caregivers so I can work and attend my teenager’s activities. We manage a delicate balance on a daily and sometimes hourly basis.

No, I don’t embrace the title special needs mom. I would not, unlike the story that I see every so often on Facebook, go to Heaven and choose Reese with mitochondrial disease. I would choose healthy Reese. I feel guilty about very little, but I feel guilty about that. There is nothing that I did or didn’t do that created his mitochondrial disease. I could not have eaten better or done more yoga while pregnant with him. He has two different mutations on a gene, one from me and one from his dad, that wreaked havoc on his cells. I trust that any decision we make with Reese is the best one we can make at that very moment. While I know all these things in my heart, I still feel guilty about wishing that I had normal. I feel guilty about my inability to truly be okay with who he is.

Reese has taught me so much. In my job, children like Reese are some of the hardest for me to work with. I am positive that is why I am he chose me. I have learned patience to know that answers will come when they will. I have patience to wait for a smile or a foot to say hello. Slowing down and being in the moment is important, very important. I’ve learned trust in strangers with long titles who know more about brains than we do. I’ve learned to not trust people who don’t listen to those that know our boy best. Adding new people to our team is better done during stability, not crisis. Saying no to conserves Reese’s energy and mine. I have learned to push aside the pain of lost friendships and non-inclusion in life outside of our little bubble. I have learned to fill my cup with people who bring me joy, even if we don’t meet face-to-face very often.

And yet, I would trade all these lessons for one real moment with the brown haired brown-eyed boy who has visited me in dreams. He’s come running around the corner with an impish grin and said “hi, mom!” Those dreams don’t come often thankfully, because they always make me sad. Our life would be so different if those dreams were reality.

I will raise awareness quietly by living with mito, not letting it control our lives any more that it must. I will chuckle as I put Reese in a shirt that says “The struggle is real” with an almost empty battery picture on it. That is truly what his cells experience. Mitochondrial disease is a disorder of energy production. Reese’s cells don’t make enough energy for his body to function normally.

 

Mitochondrial disease is not like cancer or a stroke or an accident. People understand those things. People don’t understand mitochondrial disease and the wide range of symptoms and ways it can present. To talk about Reese’s story feels dramatic and I despise drama. I will post information on social media when appropriate, but will not remind people daily how much work being Reese’s mom is.  To tell Reese’s story takes significantly longer than if he had a diagnosis people knew about. I will embrace the uncomfortable silences that follow strangers’ learning of my littlest far-from-typical 11 year old and share his complicated story. He will not survive mitochondrial disease. After he dies, there will be uncomfortable silence when I mention that I have two boys, but one is no longer with us.

I won’t fight diligently for awareness of a little known disease and will quietly fly under the radar parenting my boys. I will talk about Reese proudly if anyone wants to listen. I will talk honestly about how hard this path is. I will surround Reese with people who think he is fantastic. I will love my littlest (and my biggest) boy fiercely and fight for the best quality of life he, and we, can have. I will continue to parent him in the best way I know how. In the end when his body is tired and he tells us it is his time to go, I will let him.  No, I do not label myself “special needs mom,” just Reese and Griffin’s mom will do.