Wednesday, June 15, 2016

Remarkable

REMARKABLE: adjective re·mark·able \ri-ˈmär-kə-bəl\
worthy of being or likely to be noticed especially as being uncommon or extraordinary

Seven years ago my life changed forever. I became a mom to a remarkable little girl. Today we are celebrating Ella's birthday, but really we celebrate her every day. She came into this world in a whirlwind of chaos and confusion, tiny and a full head of black hair. As they whisked her away to the NICU, Jason and I had no idea how our world was about to change. I remember every second of June 15th 2009 like it was yesterday. It's hard to believe my baby is 7...my remarkable baby. 

Remarkable may be an interesting adjective for a 7 year old. Trust me, it is appropriate for Ella. At a recent check-up at Boston Children's hospital, the doctor that has treated her for years simply said, "Ella is remarkable." A profound statement from a physician who doesn't often offer up anything more than what is clinically necessary for Ella. She is direct and to the point and even after five years of visits, practically every three months, the relationship is still very formal. This is a doctor that I credit largely with Ella's current health and success. For her to say "Ella is remarkable" sticks with me as a mom. I have known this forever (for 7 years actually!) I love that others can see just how special she really is. 

"They" said Ella would never walk, talk or have any quality of life. She was actually labeled incompatible with life. Guess what? "They" were wrong. Ella runs around the soccer field, she danced in her 4th dance recital a few weeks ago, she talks to all her friends as she rides the bus home from school (one of her favorite things), she plays superheroes with her sister and brother and she shares laughs with her neighbors who have become her close friends. Ella is sweet and affectionate. She lovingly opened birthday gifts this year, inspecting every item and enjoying every minute. She is stubborn and has found her voice. She loves to eat oatmeal for breakfast and pizza any time of day. She is finishing up her final days of 1st grade and will start 2nd grade next year with her peers. She has taught us so much and will continue to do so. "They" couldn't be more wrong about Ella. 

So as I watch Ella blow out the candles today and play with her friends, I will really see once again how remarkable she is. A little girl who is certainly uncommon and extraordinary. Happy Birthday Ella! #lucky7

Friday, April 15, 2016

Miles of Smiles!



Ella has taught me so much. I have learned to appreciate all the things you tend to forget about once you have grown up, because work along with other stuff takes over. I was reminded of this once again this week. Things like, how much fun it can be to ride your bike. Simple things that really made us smile.
Rocking her new glasses!

Riding a bike is a big milestone for so many children. It's celebrated by parents everywhere. Milestones are important. I know this; I get it. I know because I'm not just Ella's mom -- I'm also Avery and Kellen's mom. I am not sure I can put into words how happy Ella's bike riding made Jason and me yesterday. I am not "happier" for Ella, it's a different feeling, a much deeper feeling rooted in our past. I must have watched the video dozens of times. Whenever Ella reaches one of these big milestones, I instantly go back to that day in the NICU. It's all still so clear to me. Hearing the doctor and the genetic councilor tell us that our beautiful little baby's future was bleak. Her chances for walking, talking or even general quality of life automatically diminished by a blood test that showed a complex chromosome re-arrangement. Her diagnosis considered "incompatible with life". If only we could have flashed forward to this day! So many of our worries would have been erased and replaced with hope, inspiration and happiness.

Ella is now in 1st grade. She is doing very well in school. She has adjusted amazingly well and continues to surprise us every day. More than anything, this is very comforting. She keeps up with her siblings, her friends, her classmates. She comes home with great marks on her Friday spelling tests. She gives me a hard time doing homework some nights. (This can be frustrating and also in some strange way just fine. It means she is acting like any other soon to be seven year old.) She has her first soccer practice in a few days. She asked to play...so we signed her up on the 1st grade team. (I can't wait to see her out on the field!) We always strive to make sure she never feels like she can't do something. It may take her a little longer, but she will get there. Ella does everything with a smile on her face and pure happiness.

video

Her smile was beaming yesterday afternoon. Ella is officially training wheel free!!! She is cruising around the neighborhood on her two-wheeler with all her friends. She has been working on this for a while. She started riding her bike last spring, just about a year ago. Her bike was almost instantly her "happy place". She was all of a sudden 100% keeping up with her peers. She spent hours riding up and down our street, around the cul-de-sac and everywhere she could. Avery decided a few weeks ago that she was too good for training wheels. We took them off and off she went. Everything comes very easy for Avery. For Jason and I, this was a moment full of conflict. We were so proud of Avery and her strong will and desire to do things years beyond her age. We cheered for her, we celebrated the big moment, we shared her video with all our friends and family. It was also a moment where we worried if it would break Ella's spirit. Ella was excited for her little sister, but definitely determined at that point.

I let Ella set the pace. We would work on her bike without the training wheels here and there. I was always willing to help her when she asked. I tried not to push her, because I didn't want her to feel pressured to do it. I wanted this to be Ella's accomplishment, not something she had to do to keep up with Avery. Balance isn't Ella's strong suit. She is also more cautious and careful than her sister and some of her friends. She had some nasty falls, but she never completely gave up. Something sparked her interest again this week and I had a feeling that she was going to get it this time. After a few (maybe 2 or 3) unsuccessful tries yesterday, she was off. She figured out the balance and coordination and hasn't turned back yet. Ella wanted to show EVERYONE her new skills! It was awesome to see the girls riding together. Avery is Ella's biggest cheerleader. She was genuinely excited for her sister. Avery has no idea about any diagnosis or challenges Ella faces. She is too young to understand, but I honestly don't think that will ever matter. They are so close and now they can cruise around together...training wheel free.
May they always have this much
love for one another!

This was just my latest proud mom moment, on so many levels. We can check another childhood achievement off the list for Ella. I am also relishing in the love and support my children have for one another. I am full of gratitude for the therapists, doctors, teachers, family and friends who have helped us along this crazy journey. These are the people who supported, encouraged, counseled, consoled and still cheer with us constantly. This won't be the last time Ella thrills us with her accomplishments. She's our inspiration! Cheers to many more miles of smiles :-)