Saturday, November 28, 2015

WE have survived two years!!

This post means more to me than I thought it would.  Our little man is two and honestly there were moments in the past where I thought he wouldn't live to see this day!  At his lowest point on the ventilator in the PICU, I remember the nurse pushing the BLUE BUTTON, the look of worry on her face was not settling to me and I thought at that moment he would be gone forever.  Or the 5 different times the nurses took him back and he went under anesthesia for various procedures and surgeries.   Looking back on all of the ups and downs, it is not hard to have a huge smile, a fluttery heart, and be speechless.  I have no words to describe the joy that this little boy has brought into our lives.  He is a warrior, a champion, a superhero, a fighter, a comedian, a smarty pants, a music lover, determined mini-man that is always pushing himself to the next level and will continue to always need to do that throughout his life.

We are often asked when will he "grow out of this."  The awareness just isn't always there and the misconception that this is a thing that can be fixed and fixed easily sometimes is rather upsetting.  Cohen is meeting milestone after milestone but at a slower pace, his own pace.  Progress is power and he has a lot of it!  But he will continue to struggle throughout his life, whether it be medically, socially, or educationally.  Call me a Debbie Downer or a pessimist, but I've become a realist in all of this.  I can't brush off the struggles I know that may be in his future.  I can just plan and hope that his past was his worst and that his future can only be brighter.  There isn't a cure for 22q and probably never will be.  It is a chromosomal disorder that affects all areas of the body at all different intensities. But with that being said, there are always accomplishments to celebrate!!

It has been over 5 months since my last post and Cohen has made leaps and bounds!  His language has EXPLODED and now has more signs than I can count!  He is extremely verbal and can shake his head yes and no for what he wants, is requesting things to play with by either signing or nodding, and even tells me when he doesn't like a song on the radio by saying "MORE" meaning "NEXT SONG MOM!" He has also begun to show more interest in eating and is requesting particular foods at the refrigerator. This is huge progress for a child that doesn't even know hunger.  It will be the slowest process to get him rid of his feeding tube, but it is something that without it, he wouldn't be here.  As scared as I was of him having his feeding tube, it has made him the stronger and fearless child he is today.  Without it, he wouldn't be progressing and reaching all of these milestones.

And this just happened two days ago, right before his birthday!  It is only a matter of time before he will be running around and we will be sprinting trying to catch up with him.

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The other day a good friend asked me, "So how are YOU?  How have YOU been handling the past two years?"  I don't think I've actually ever thought about that nor had the time to do so. I've been treading water trying to stay afloat.  Whether it be trying to give my undivided attention to my eldest child and make sure that she feels special even with everything going on, to the intense care that Cohen needs, I have yet to reflect on myself and what I have been through.  These past two years have been intense in so many ways.  Cohen has overcome major setbacks, I have started a new career in search of something flexible to be able to stay at home with him, and we have recently moved back to California to be closer to family support and nice weather :)  We have had a whirlwind 3 months getting situated here, fighting for therapy in a new state, and making sure that both Cohen and Isla are comfortable.  But even these huge transitions and changes are nothing compared to where we have come from and what we have gone through.   Yes, I know I wasn't the one hooked up to all of the wires and monitors, or the one that has been vomiting every day for the past year and a half, but I have been there through it all!  I, as the mother, will never forget the things my little baby boy went through and am thankful he will never remember those times.

The 2's are going to be wonderful for Cohen!  I'm ready to see what he will accomplish over the next year and know that it won't be disappointing.  His first year was full of beeps, cords, surgeries, and scars.  Now his world is full of wonder, excitement, and curiosity and I hope it can stay that way!