I type this with a sickening sadness in my heart. Something I have feared from the beginning of my motherhood experience. Something every mother fears. My child having a disease without a cure.
Today we learned that it might just be a reality with our youngest, Kohana. We aren’t positive yet, because he still has to be evaluated and have some testing done. However, since I saw the look and obvious avoidance of a diagnosis from his pediatrician, it runs in Nick’s family, and symptoms match perfectly, we have a fairly good idea.
I type this as a form of personal therapy as I sit downstairs in my living room, clinging to my phone as Nick and I discuss our future from opposite sides of the world. The children are sleeping soundly upstairs, and usually this is the time where I would be cleaning up their mess of toys scattered about the house, doing laundry, or pumping breast milk to increase my constantly decreasing milk supply. But tonight? Tonight I just cannot find the physical strength to finish those tasks. Hearing Nick constantly reassure me that everything will be okay (and not believing it) is the only thing I am able to do tonight.
Now I know, its not the end of the world. Some say he will just “live differently” blah, blah, blah. But its the end of our world. Our world as we knew it before 10:15 this morning when the nurse called my sweet boy’s name back.
The questions have been racing through my scattered mind since I walked through the doors on the way out. Luckily, my parents had offered to watch the girls so I could take Kohana by myself, as we have all suspected something was abnormal with his muscles for a while now and I needed to be able to focus on his appointment. (Hearing my mother sound concerned about his weak legs really frightened me, as she was a nurse for many, many years and cared for several patients with various muscle disorders.)
His doctor is a sweet, caring man who clearly loves his patients. So when he came into the room and began asking me questions about milestones and his face went cold, I knew something was wrong. He checked his ears, eyes, and mouth. He noted his high cleft palate. His lip tie. Then moved down his body to his legs. He felt for the bone structure, and noted that it seemed normal. So it was in his muscles. He tried to lift him to encourage him to stand on his legs, just to bare some weight. Just for a second. But like I had told him at the beginning of the visit, he was unable to use his legs to bare weight. Kohana’s legs collapsed in his doctor’s lap and his expression changed from hopeful, to concerned. My stomach sank. He then placed Kohana back into my arms, wrote something down on his clipboard, and told me that he would be referred to specialists, because he could not make a diagnosis. He’s just a basic pediatrician.
“We will get him involved in some physical therapy to help strengthen his muscles, and so he can be formally assessed by specialists.” He said trying to reassure me. I’m sure I looked like I was going to breakdown right there. I’m usually so strong.
“You said muscle and nerve disorders run in your family?” He asked.
“Yes, his father’s mother died from one.” I responded. Cue more clipboard writing and awkward, sickening silence as I waited to hear words that he refused to say.
Soon after our discussion, I was shown out while carrying my beautiful seven and a half month old that shot everyone gorgeous, gummy smiles. That didn’t look like he had any physical issues. That didn’t have any idea what just happened. What words were just exchanged. All he knew was that his mother was holding him tight against her chest and that he was loved. And that’s all he needed to know.
So as I sit here now, feeling shocked, depressed, and tuned out, I will let the tears fall where they may and not let the guilt of unfinished housework affect me. I will look at the future with the most optimistic, positive mind I can manage. And I will eventually drag myself upstairs to bed, and wrap my arms around that precious little being that has stolen all of our hearts and nurse him back to sleep, just like I always have.