(lifelong learner) mom with a blog

 

“If we truly listen, our children will always surprise us with the depth of their innocent wisdom that has not yet been shaped by years of life experiences. Keep your ears and your mind open.”

♥ ♥ ♥ ♥ ♥ ♥

This past weekend my second article for Babble was published. This one is called, “10 Things My Daughter With Special Needs Has Taught Me About Life”.

The title is pretty much self-explanatory. This is a piece discussing ten things that my sweet girl has taught me over the past five and a half years. Of course, I knew that I would learn a lot becoming a mother. Parenting is a learning experience, right? What I did not realize was that my children would teach me so many poignant and important lessons about life.

I hope you enjoy reading this piece as much as I enjoyed writing it. ♥

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(advocate) mom with a blog

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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 PostToday Parenting Team and The Mighty.]

(special needs) mom with a blog

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As you probably already know from reading this blog, our daughter will be going to kindergarten in the fall. The past few months have been spent going through the process of registering her and working with the school to find her the appropriate services and placement. It is a very intense and draining process.

After one particularly emotional day, I sat down and wrote an essay about what I was feeling. I wanted the world to know what an amazing and capable and special little girl my daughter truly is. Children cannot be defined by labels and diagnoses alone. There is so much more to them.

My piece was published on Scary Mommy this past weekend. I am really proud of this one. You can read it here.