Five and a half years ago we were blessed with a little bundle of joy on the morning of Christmas Eve. Our daughter, Evalyn, came into the world as an early Christmas gift for us. She was born with a serious congenital heart defect and struggled after birth. Although we knew about her diagnosis during my pregnancy, we were still not prepared to watch her be whisked away to the NICU and transferred after only a few hours to a Cardiac Intensive Care Unit at a children’s hospital over an hour away.
The first weeks of Evalyn’s life were spent in the hospital and filled with medical challenges and procedures. She had her first open heart surgery at only seven weeks old, and finally at nine weeks we were able to bring her home. Due to her rough start in life, it was evident from very early on that she was delayed in meeting her developmental milestones. She began working with early intervention at only five months old. This is what it means to be a special needs parent.
The subsequent weeks, months and years have led to more diagnoses, more medical procedures, and hours of therapies. As time went on the degree of Evalyn’s developmental delays became more clear. She did not crawl until 19 months and did not walk until 30 months. At two and a half years old she was only able to say a few single words. Over the past three years she has come so far. Although she continues to make great progress each day, she is still significantly delayed compared to her peers in all areas. This is what it means to be a special needs parent.
Those weeks, months and years have also shown us the amazing little girl that we have. She is smart, funny and has an enthusiasm for life that is infectious. There are so many things that make her the person that she is – her kind heart, her quirky interests, her love of people, her smile. We have watched her grow from an adorable infant into an incredible little person, and we are so lucky to have her in our lives. She has taught us so much about strength and love, and has made our lives and our hearts fuller. This is what it means to be a special needs parent.
We are now facing a new challenge as we prepare for the transition to Kindergarten in the fall. As Evalyn is getting older, we are finding what an emotional process it is to try to show the world all her strengths that we see everyday. I know what it’s like to sit through seemingly endless meetings and feel the disappointment and heartbreak after hearing all the things your child can’t do. I know the frustration of having told your story over and over, and still feeling like no one hears you. I know how it feels to be fueled with determination to do whatever it takes to get the best for your child. This is what it means to be a special needs parent.
Evalyn, and every child with special needs, is so much more than what you see on paper. My daughter is not an IEP. She is not a diagnosis. She is not a percentile ranking. You have to look past all the evaluations and test scores and labels to truly know her. It is so difficult as a parent to see how so many people are unable or refuse to do this. As her mom, I will continue to do whatever I can to help the world view Evalyn as we do. No one knows her better. I will be her biggest cheerleader, her number one fan and her loudest advocate. I will not stop until everyone can truly see her. This is what it means to be a special needs parent.
[This post has also been published on The Huffington Post, Today Parenting Team and The Mighty.]
3 thoughts on “(advocate) mom with a blog”
While I was reading your words and nodding my head, I was thinking, this woman has lived my life! There are stunning similarities in our daughters. All that your sweet girl has gone through has touched my daughter’s life as well. From the open heart surgery at seven weeks to the many many IEP meetings I have sat through over the years. My heart has some idea of what you have gone through, although we all have different circumstances and I cannot pretend to know all you have gone through. Please know that your blog post struck a chord in me and I wanted to reach out and let you know that you have touched other mothers in your brave quest to be your daughter’s advocate. Thank you for letting others know of the struggle and the joy of having a special needs child.
Thank you for your kind words, Allison! It means a lot that my article meant something to you and others. Being a “Heart Mom” and a parent of a child with special needs is both a difficult and wonderful road. <3 All the best for you and your daughter!