Be Inspired!

PURE LOVE

WOW!!! It is hard to believe that 1 year has already passed by and how can we possibly be celebrating Joella’s FIRST birthday.  This year has definitely been a whirlwind for my family and the most descriptive word I can come up with is “WOW!”  Just one year ago, coming to terms with the diagnosis of Down syndrome is probably the single hardest thing that I, as a mother, had to do.  As a mom, you want the best for your children and bam you are hit with “We suspect your baby might have Down Syndrome.” just hours after giving birth and after the doctor telling you that your baby is in the NICU with respiratory problems.  I look back on that now and reflect on the raw emotion that I felt.  At that particular moment after the doctor told us, I didn’t care about the “Down Syndrome”, but was most concerned about if my baby was going to be okay.  We anxiously awaited the results of the echo because I knew enough about Down syndrome that there can be problems with the heart.  I wanted to know if she was getting enough oxygen and wondered how long she would have to be under that hood.  She was one healthy baby though weighing in at a whopping 8lbs 10oz and she dwarfed all of the premature babies in the NICU.  That experience truly opened my eyes. Each day she was in the NICU, she progressed and was making her way to being home.   I watched as some of the other babies were truly struggling each and every day.  My heart hurt for those mothers who would place their tiny babies under their shirts to create that bond and warm them up.  How truly fortunate we were.  After 6 days, our Joella was released to come home, healthy heart and all. Then the thoughts starting swirling through my head about caring for a child with a disability and how was it going to differ from my other daughter.   I began feeling anxious about the future and how exactly was I going to handle this because right at that moment, it wasn’t any different.  Caring for Joella was no different than caring for my other daughter when she was an infant.  Sure, I worried more about her breathing and keeping her warm after the stay in the NICU, but other than that she ate, slept, pooped, peed, just as my other daughter did.  The days quickly passed and my love grew and grew for my precious girl.  There would be days that I actually wouldn’t even think about the “diagnosis” and maybe that really was all a bad dream, yep the doctors had to be wrong.  Nope, that just wasn’t the case especially after seeing the karyotype in black and white withTrisomy 21 staring me back from the page and maybe my safeguard to feeling was actually denial.  Reality.  Time to face it head on.  I loved my baby girl far too much to not do my best for her, so it began, doctor’s appointments, and First Steps processes to begin therapy and let the whirlwind begin.

Consequently, the past several months have been filled with therapists, wonderful therapists, that have helped us in many of Joella’s successes and reaching these milestones.  These milestones that we strive for to make sure that development is happening like it is suppose to.  It is important, but I have a new take on it since passing by a plaque in a store that read “Life is not a matter of milestones, but of moments.”  I had to buy it.  So now, we are blessed with wonderful moments, like when she sat independently by herself at 6 ½ months.  When she began playing and manipulating her toys at 10 months, and exploring them with her mouth.  Our latest moment, is her scooting on the floor by herself on her tummy.  These are all wonderful moments in her life that we will remember forever. These little accomplishments that we can notch off for her.  She has also developed quite the personality as well, and yes, Mama has made her ROTTEN!  Who wouldn’t, did you check out those cheeks, totally kissable!!!  However, this is something her therapists aren’t quite as thankful, the rottenness that is.  She has a way of “putting on the lip” as we say when she has had enough or just doesn’t want to do the task at hand.  It is quite pitiful for anyone to witness and as her speech therapist states, “It can break anyone’s heart.”  So she has mastered how to get compassion and to manipulate that at quite a young age.  She has a quirky little sense of humor and a contagious giggle.  Her big sister, Laney, is by far one of her favorite people, and my favorite thing to watch as a mother, is how Laney can make Joella laugh so hard by just being silly.  No one can make Joella cackle like her big sister and my most favorite sound to hear is my girls giggling together.  I look forward to hearing that sound for a long time.

So, WOW, one year has passed and we survived the whirlwind of the diagnosis, the revolving door of therapists, and the “moments” reached.  Even with the whirlwind, I believe that in all I have come to appreciate so much more in this world and have a greater understanding and compassion for all.  I am thankful to be a part of this family of friends in our DSACK community and believe that we wouldn’t be as far as we are without the support of the Parent group and the programs like First Steps.  I am so grateful to all with inspiring stories that encourage my family to press on and to continue to strive to do our best to help Joella become the best that she can be.  The road ahead may be filled with uncertainty and may or may not be easy, but as always in anything that my family has faced, we have managed to overcome by pure love.  So, Happy Birthday Baby Girl, We Love You!!!