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The Reality of Becoming a 'Rare Disease Parent'


This is my reality.

I’m coping with the fact that my child has a medically rare, chronic diagnosis: Mast Cell Activation syndrome (MCAS). I haven’t fully accepted it yet, but I’m getting there. I recently read a blog post about being a mother of a “special needs” child. I cried when I read it because I never thought of my child as “special needs,” but when I read the article, I realized it applied to me perfectly. I am a mother of a child with special needs. No quotation marks needed. My child does not “look sick.” I am often told: 1) how good he looks; 2) how he looks like he’s gaining weight; 3) how happy he seems.

My response?

1) Yes, he does look good. It takes a ton of effort to keep him looking this good. The majority of his symptoms are internal anyway, so even at his worst, he would probably still look pretty healthy.

2) Tell that to the scale. He’s not gaining weight right now, and your comments minimize my reality and the intense fear, sadness, helplessness and frustration I feel every time we go to the doctor’s office for a weight check and see his lack of weight gain.

3) He is happy

We are so lucky our child is generally happy, playful, relaxed, inquisitive, patient and engaged. But his disposition is often like that even when we know he’s uncomfortable, which hurts us. And when he’s really screaming and crying, we know the pain must be pretty bad. That hurts more.

This is my reality.

I’m coming to terms with the fact that my 10-month-old son is allergic to everything and anything — meaning he could react to triggers (food, environmental, etc.) with vomiting, rashes, abdominal pain, sleeplessness, restlessness and hyperactivity. And once he reacts to something, it can take weeks to start seeing improvements again. I’m nervous during play dates, and I’m terrified to take him to parks and public places. If I take him outside, I spend the entire time worrying about every possible trigger, so we just go back inside because it’s a lot less stressful. Any time I have someone over, I’m half-listening to their stories and half watching them like a hawk. (Yes, you just washed your hands. Thank you. But then you ate those pretzels. So yes, you need to wash your hands again before you touch my son or his toys. Yes, I’m serious. This is my son’s life. This is my life. Wash your hands again.)

This is my reality.

I often find myself comparing my child to other children with chronic health conditions. I look to other children and sometimes think “at least my child doesn’t have ‘XYZ.’” This mindset minimizes my own child’s condition, and dumps me back onto the denial train. It also makes me feel guilty for having sad feelings regarding my child or my situation. How can I feel bad about this when another parent is dealing with that? Not healthy, I know. I’m trying to find acceptance by looking to families with healthy children, and acknowledging my current experience is quite different. I’m pretty sure typical families do not take their child for weekly weight checks or scrutinize over every dirty diaper. I’m sure that it never crossed their minds that their child may have an allergic reaction to heat, and therefore maybe they should not go to the park that day. Very little of what we’re going through with our child is considered “normal.” I’m allowed to mourn the loss of my hopes and expectations for my experience as a first time mom. I’m allowed to compare. It’s all part of my process.

This is my reality.

Other parents are proud of their children for talking, walking and clapping. We are proud of those things too, when they occur, but we’re also really proud of how well he takes his medicine. My child, who is 10 months old, is just now starting to take his disgusting, compounded medicines without crying or spitting them out. Every time he takes his meds (which is four times a day), we throw a party, praising him profusely. “We are so proud of you! Way to go! What a big boy! What a trooper! Yay baby!” And this really pisses me off. He shouldn’t have to take his medicine like a big boy. He is a baby! And that compounded, no-dye, no-flavoring, no-preservative medicine tastes terrible. He has every right in the world to protest, scream, and spit. But he just takes it peacefully now. I’m proud of him, and simultaneously, it breaks my heart that this has become his new normal.

This is my reality.

My child was diagnosed with Failure to Thrive (FTT) at 4 months old. We calculate everything that goes into his mouth, to the 10th of an ounce. We feel anxious when he does not want to eat some days, and we celebrate each ounce he does eat. We take him to see a GI specialist every three to four weeks, and we take him to the GI’s office weekly for weight checks. We used to weigh him at home every night before bath time, but then stopped when we realized it was not helping anything, and it was not changing anything.

This is my reality.

I have the sweetest child, who is also my greatest educator. He teaches me patience like I never knew it was possible, and to be comfortable with uncertainty. We rarely feel confident in knowing what triggered a reaction. Sometimes it’s near impossible to tell whether he’s teething/fighting a virus/[insert normal baby thing here] or having a reaction to something. While I’m not at the point of being comfortable with these uncertainties yet, I’m learning to accept them, and I’m more familiar with them now. He teaches me to be strong, and to speak out. I have always been one who is eager to please, who does not rock the boat. By advocating for my son, I have found my voice and my strength to speak up, ask for services, demand answers and expect nothing less than the best for my child. My child is worth it. I am truly lucky to be his mommy, and I hope my struggles during this time will help eliminate or ease the struggles he will face as he gets older. My child came from me. He is a part of me. He is my reality.

This is my reality.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.