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…

We aren’t sure if our son will ever walk unassisted. We don’t know when and if he will say his first words. There is a harsh reality that comes with having a child who is affected by this rare disorder. I’ve learned not to have any expectations. I live in the moment. I have to. I live in joyous moments and not defeating thoughts. I can’t live in the depressing reality that my son may never have the ability to care for himself, drive a car, or get married and have children. I celebrate every small achievement. I smile when I hear my son say a different consonant when he’s…

As I lay in bed next to our 4 year old I feel myself wanting to hug him tighter and apologize. Some nights I look at his innocent face and tears well up in my eyes. This was not what we had planned for him. The beauty is….he has no idea of the plans I made.  He doesn’t know that I envisioned him helping his little brother ride his old trike around the block on a warm sunny day. He has no idea that I had scrapbook paper for the classic photos of shared baths in a tub full of bubbles. He doesn’t have a clue that I could hear their…

I have been told some of the most flattering, uplifting, and kind compliments over the last year. Many people have told me what a wonderful mother I am or that my son is extremely lucky to have me as his mommy. These words are very encouraging and I tuck them away for the days when I’m not feeling so awesome. Yes, I’m thankful and flattered but I’m also confused. Confused? You may be wondering why? I’m confused because I feel that I’m not being any more special or fabulous than you. I’m just being his mom. You see, when I first laid eyes on my boys I gave them my…