Reece’s Journey – A Father’s Wake Up Call
Therapist Kale DeMent works with Reece while pointing out his reflection in a mirror. The ball helps him learn to use his legs and, in another position, his arms.
Somewhere in the back of my mind I have always thought that Reece would some day be normal. He is in that truly adorable stage of life that all of our children have gone through only his phase is lasting longer than any of theirs did. I am loving every minute of it. But he weighs about 25 pounds now and he is getting to be a load to hold and carry. He is making progress in therapy but he is not even close to walking yet. He is scooting on his bottom all over the place but not crawling. Still, I have harbored in my mind somewhere that sometime or another everything would just click and he would be pretty near normal.
The fact is he will probably never be normal as far as his academic and his physical development unless God just does some amazing miracle. This just dawned on me this week. My wife Patty was reading on Einstein Syndrome and she pointed out an article to me. Miriam, the author of the site, was relating how she was trying to teach her 15 year old down syndrome daughter some basic reasoning skills in mathematics on the 2nd grade level. There is a struggle now in at least the second year. That is when the light came on for me. I woke up to a new reality. I realize that my son will always be special but he will never be normal. I have worked through this realization and have come to this conclusion, I will always love my son no matter what.
Reece looks at therapist Melissa Steele while his mom holds him on an exercise ball. Melissa does all she can to make the therapy a good experience but Reece is not convinced.
We are truly blessed with Reece. He draws love out of you like no kid I have ever seen. We bring him into a room and people just light up. They are drawn to him. Everyone is drawn to babies but this is more than that. I can’t really explain it. I see all that going on and I know he has a special gift. I have to resolve my feelings with the knowledge that his normal is going to be very, very different from anything I have experienced before. I can’t really write how this boy makes me feel. It is somewhat beyond words. I love him and I know he loves me. I can see it on his face and in his eyes even if I can’t yet hear those words from his lips. Someday, someday!
Patty and I have much to be thankful for with Reece. So many DS kids have terrible physical problems. Reece has a very healthy body. We finished our visits to physicians recently and the urologist just came in and asked Patty why she was even there. He couldn’t understand why we would bring a healthy child in to see him. His visit to the eye specialist was also very good. What his initial physician thought was a pretty serious condition turned out to be nothing but inactive scars on his retina. The doctor said there is no way to know why they are there or what caused them but there is nothing to worry about. So we are very blessed. Our boy is healthy and strong and making good progress in his physical therapy. There is indeed so much to be thankful for. And I am thankful.
Reece demonstrates his phenominal pout face during a therapy session at our home.
Just a funny note; Reece hates physical therapy. My mom took him to his appointment last week and she said that when he went inside the building and realized where he was he immediately started to pout. He has this awesome pout face. The therapist, Kale DeMent, thinks Reece doesn’t even like her. The other therapist, Melissa Steele, comes to our home and Reece doesn’t really like to see her either. Still, he is making progress and getting stronger and moving better so like it or not the therapy will continue. In not too many weeks the poor little guy will begin speech therapy. They will be messing with his mouth and boy oh boy, he really hates that. Good luck to whomever has to do that. The pout will take on monumental proportions!
Photos copyright Gary Cosby Jr. The opinions expressed in this blog are my own and do not necessarily reflect those of my employer.
I think every mother just said a collective “awwwwwwww!!!!” when they saw these photos. Especially the last one. God sure gave him to the right family
sweetiegirlz
November 24, 2008 at 12:53 am
He is a handsome young man. Daddy has every right to be proud.
Will
November 24, 2008 at 3:23 am
It took me longer than you to come to that realisation for my daughter, but never let anyone tell you that there are things he wont be able to do, or dismiss things as normal for kids with down syndrome because every child is different and historically a lot of problems have been through lack of intervention of lack of trying.
When Christina was drawing or painting she used to make a loud annoying Eeeeeeeee sound. A healthcare professional told me she would never grow out of it because she has down syndrome. So I decided to test that assertion. I would ask her to draw quietly once and if she stopped for a second I would give her lot of praise and tell her what great quiet drawing she was doing. Within a couple of days I could get her to stop making that noise. She still does it now but we can get her to be quiet when we want to most of the time.
Christina used to get shown off to med students as part of their training. They would be told nothing about her and asked to make a diagnosis. All of them would immediately diagnose DS without the benefit of a chromosome test and many of them started imagining things that did not exist like heart murmers, palmer creases, brushfield spots and the like.
Love the pictures and especially that pouty face
Paulo Rodrigues
November 24, 2008 at 11:12 pm
Thanks guys, especially you Paulo. What you said is exactly what our specialist said when he diagnosed Reece. He told us not to do a whole lot of research online because all you will hear is what DS kids can’t do. He told us never buy into that stuff because, just as you said, every child is different and we should not settle for less than Reece can be. Your comment is very encouraging, especially right now because I am coming to terms with this in ways I had not dealt with before. Thanks.
Gary Cosby Jr
November 25, 2008 at 3:47 am
Our little girl Denay has just turned four years old. She doesn’t suffer from DS… I think she enjoys it. All I can tell you is at four years old, the fun just gets better! Oh, one warning. When the physical therapists start teaching Reese to “scribble”…your home will never be the same… Hide all the Sharpie permanent markers!
- Kent
Kent Eddy
November 25, 2008 at 5:26 pm
Hey guys, I just found this by mistake when looking up some P.T. stats for the area! More than anything, I am just glad that face is just not for me! Unfortunately for Reece and fortunately for me, he makes my every other Wed. joyful! I love to see his progress and experience his milestones! He will always be a bright spot in my day and in my heart! You are very blessed and so am I to know this precious young man!
kale
January 22, 2009 at 2:39 am