As a parent of a “failure to thrive” child, weight checks are not my favorite thing. The scale taunts me as if it is the measure of how successful I am at caring for my son. It reminds me of how far we have to go. It has the ability to completely crush me. A tiny scale has the possibility of sending me home from an appointment in tears.   At our last appointment the nurse asked if we could get a weight check as I wheeled him to the exam room. “Yes, as soon as I undress him” was my response. His pediatrician would like very accurate weight checks…

“God only gives you what you can handle.” People often say this when they don’t know what else to say. As a mom of a complex child this phrase has been uttered to me many times with a gentle smile. At first you want to believe that God hand-picked you for a rewarding task. God believes in ME more than he believes in you, which must be the case since you don’t have a medically fragile child. You were not chosen to live this life. This life of inescapable worry, beeping machines, and constant therapy. Tears in the car after an appointment, sobbing until snot runs down your face in…

Raising a child with special needs is a lot like being stuck in traffic. You’re driving along and then all of a sudden you see the brake lights illuminate on the cars in front of you. Then you slow to a stop. This is not what I planned for at all. I’m not prepared for this. I thought I did everything right and left the house with ample time but I guess not, and to be honest, I’m angry. I start to feel anxious and wonder when we’ll start moving again. I worry about being late to my destination. I try to look ahead to determine what the holdup is,…

I received a private message a few months ago from a complete stranger. Her message was warm, kind, and sincere. She herself has a special needs sister and our experiences have touched her and she felt compelled to reach out. I can’t tell you how wonderful it was to gain some insight from a sibling. A few things she wrote resonated with me and I think about her words daily. “Amazing children are on the sidelines.” We do know this. It wasn’t just our life that changed when we received their little brother’s diagnosis, theirs did too. The other day I realized just how amazing our (almost) five year old…

As a mom with a complex kid it’s easy to get caught up in daily chores and things on my to-do list. There never seems to be enough time in the day. Ever. The list keeps growing and things get forgotten. Our little guy has a day filled with his own tasks. As soon as he wakes he needs to take on a day filled with therapy and activities I have planned for him. Wake up, meds, water bolus, sit in high chair and play with food while having breakfast via g tube, get ready for therapy, after therapy more tastes of food while feeding him, stander for an hour…

1. We’re exhausted. Physically, mentally, financially, and emotionally drained. The exhaustion is much more than just sleepless nights, although we’d like a full night’s sleep too. 🙂 I am exhausted from worry, anxiety, and fear. I’m exhausted from daily cares, therapy, and appointments. I am exhausted from the constant unknown. I lay in bed at night and worry. Our worries never go away. As much as we try to live one day at a time it’s really hard not to go to places in the future. Will he talk? Will he be teased at school? Will he ever sit on his own? Will he be in diapers forever? 2. We…

We have been away from home now for nearly 3 weeks. Intensive therapy for our small hero was more than I imagined. To be honest, I didn’t have expectations. No expectations, just celebrations, remember? I stuck true to this and left for California with an open mind and three identical favorite monkey blankies. You can never be too prepared. The very first day we arrived I met a couple of other moms and we instantly hit it off. Wish I could say this for my extremely-attached-to-mom-and-monkey-boy and his reaction to new therapists! As time went on the wailing turned into whining and he soon started flashing his magical smile to…

I cried in the baby aisle at Target today. All because of a small yellow bath sponge. You know the kind that you can lay your baby on in the bath tub and it gives them a nice little cushion? That kind. Target hasn’t had it for months but I keep looking and today was no different. I threw the diapers in the cart and headed to look down the bath aisle. I stood there and looked at the baby tubs and bath seats and tears welled up in my eyes. I felt so ridiculous. I was crying because they still don’t have the bath sponge. I was crying because…

Sometimes I feel like Elphaba from Wicked. Green face. Different than others. Not wicked, just not like you. I’m in a different club. A club of green face moms who measure output and diligently measure milliliters of input. Our children have foreign objects in their body that help keep them alive. We compare poo consistency as if we are talking about the weather. Our children see their pediatricians and specialists more than our relatives. We’re different. In the beginning, I would walk around Target and watch happy moms in their skinny jeans with their perfectly healthy children and want to scream. I wanted to run up and say “Don’t you…

Lately I cannot stop singing the song For Good from the musical Wicked. I’m either singing parts of it out loud or it plays over and over in my head. Love that song! “I’ve heard it said That people come into our lives for a reason Bringing something we must learn And we are led To those who help us most to grow If we let them And we help them in return Well, I don’t know if I believe that’s true But I know I’m who I am today Because I knew you…” This is exactly how I feel. This journey has brought so many different people in our…