Milestone: 5 years old



It’s time for Five! My daughter turned 5 yesterday, on St. Patrick’s Day. It’s a huge milestone in my eyes. Maybe it was just a birthday for her, or her brother, but as usual my big sappy self says this was a huge day. It’s been 5 years since her birth, a day I can never forget, but would like to sometimes.

Back then I couldn’t even imagine getting to her fifth birthday, not because I couldn’t imagine her surviving, but I just couldn’t see that far ahead, I was only looking to hang on day by day, week by week. Soon it became month by month, now year by year. It’s so wonderful to be beyond that.

We are still here, River still has a portal to her tummy, her g-tube, her life-support. We are ever changing and growing as a family and marching forward into unknown territory with her medical conditions. People occasionally seemed surprised to find out she still relies on her tube, since she eats so well. They are sometimes surprised to hear that her heart surgeries are not over. They may also be surprised to hear that she didn’t walk until the age of two. That she’s been in feeding therapy, occupational therapy, physical therapy, and speech therapy. They might be even shocked to hear that she was delivered via emergency c-section with unknown conditions 2 months early, at 3 and 1/2 pounds. That she survived her first heart surgery at that same weight only 2 weeks old. Her second at 5 months. She’s had spinal surgery, eyelid surgery, and g-tube surgery. She’s a bright little girl with a heart full of joy and dreams. She kicked butt back then, and she still does.

Doctor’s once told me it was my milk that was causing digestion issues, so let’s try some fancy expensive medical formula made mostly out of corn sugar. It really boiled all down to oral aversion. She does not have allergies or digestion issues. But sensory aversion will keep a child from eating. With years of treatment we have a girl that eats and drinks. At five she still doesn’t understand how much she needs to eat to grow on her own. We will get there, we don’t know when, and I’m done with orchestrating any more “trial weans” or “feeding treatments”. We are going to let River decide when her tube comes out. Everything has always been done on River-time, sometimes I wonder if any of the therapies even worked. River, perhaps, got there on her own. We just happened to be in therapy, coincidentally. It’s always been up to her! She’s still just as decisive and head-strong as ever, and I can’t wait to see her continue to grow up!!



Dear River,

I’m delighted to be your mother. I love you in a way you will only understand when you are a mother. You’ve made me become stronger than I ever thought I could be. You’ve brought me to my absolute lowest moments, my scariest moments. You’ve shown me what life is really about. Your brother taught me how precious life is, you taught me how to fight tooth and nail for it.  You showed me that pain is temporary, that it can be overcome. You are Xena, you are Joan of Arc, you are anything you want to be or can imagine. You are perfect, pretty pretty please don’t you ever ever feel like you’re less than f***ing perfect! I will always fight by your side, as long as you need me to. I may have goals, but you are my purpose. You gave my life more meaning than I thought possible. Together we are invincible!




4 thoughts on “Milestone: 5 years old

  1. Tears are rolling down my face after reading your beautiful words to River. Michelle you are the most amazing person and mother I have ever or will ever know. You inspire me! I love you all so much and can’t wait to see you next week!

  2. It’s so encouraging to see her at five years old. Life with a heart baby is so hard to explain to someone who has never been there. My little CHD baby is two and he struggles to gain weight – he is a handful, but I am glad for his strong personality. 😄

  3. Way to make me cry! Love you both so very much so glad that you are able to raise your beautiful daughter and so humbled by your appreciation for her! She is beautiful! Love you!

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