Things I Can't Say

Tips and Tales from an Introverted Mom

Trudging Forward and Fiercely Advocating: Things They Can’t Say

things they can't sayI’m Kristin, a 20-something mom and wife of a residence hall director.  My rocky road to motherhood was filled with shock and adjustment. Now I’m a stay-at-home mom to an active tube-fed toddler (C) and a baby girl (Baby Jo), blogging at Little Mama Jama.

“Your special needs child.” Reading those words was like getting slapped in the face. I don’t know what it is about them. They are true, after all.

C park 2

I guess I never thought of my 2-year-old son that way. He’s my sweet, funny, smart, stubborn boy. Yes, he has always had feeding issues. Yes, he had dropped almost everything out of his diet except crackers and fruit snacks. Yes, he had fallen off the bottom of the BMI chart. Yes, he had a feeding tube in his nose (NG tube). Yes, he was about to have a feeding tube surgically placed in his stomach (G tube). But special needs? Ouch.

Those words were just too much. I slammed the G tube information binder closed. I couldn’t take it anymore.

Hot tears ran down my cheeks. My heart ached for my boy. You wouldn’t know C had “special needs” by looking at him. He’s developmentally and socially on track for his age. His growth was becoming a serious problem, but he was a happy toddler. Why did this happen to him? Why can’t he eat? Why doesn’t he want to eat?

G tube surgery 2

That was nearly two months ago. With his G tube feedings, C has been making major progress on the growth charts. He is now safely in the 25th percentile for both height and weight! We still don’t know what is going on with him. We know that there are sensory issues at play in all of this, but continue to piece that complex puzzle together. Advocating for my son has become my full-time job as I push for further testing to see if his feeding problems have a physiological cause. The words “special needs” still make me cringe a little, but I’m starting to accept them as we move forward day by day, feeding by feeding, appointment by appointment.

That’s what motherhood is, right? Trudging forward, fiercely advocating for our children, shouldering more than we think we can handle, all for our family’s best interests. Special needs? Those two words are just a label, but love and motherly instinct is always stronger.

 

Comments

  2. My son has a severe peanut allergy and the first time someone called him “special needs” I was a little taken aback. But technically, it did fit. Like you, I’ve had to advocate for my son in a way that most people don’t ever have to think about and there are certain things about him that must be taken into consideration on just about a daily basis. Still, it’s weird. I know what you mean.  I imagine it’s that way for every single parent who has ever had that label put on their child no matter what their child faces. Your little guy is adorable!!  SO glad that he is doing so well!! –Lisa

  3. I am thankful each and everyday for my two healthy kids and my heart goes out to the families who have a child that isn’t 100% healthy. That label may be technically right for your son’s problem but he is so much more than that label. You will always be your son’s advocate and you will as fierce as any momma bear in the fight to find out what is wrong and in solving it. My best wishes go to you and your family

  4. My heart goes out to her. I am also a mother of a “special needs” child. It has been hard but I wouldn’t change it for the world.

  5. One of my best friend’s nephew had a similar situation and had to have a feeding tube. He’s doing so much better now and has been gaining weight, etc. I hope the same for you and your family. All the best!!