Monday, November 23, 2009

A vent from a protective mother

He’s not “Downs”

I get so tired of hearing people refer to Jack as “Downs”…People say things like, “well, Downs’ kids” or “since he’s downs”..etc.

He is not DOWNS! He is Jack. To be specific, he is Joseph Steven McKenzie and we call him Jack. He is our little boy, the first grandson on my husband’s side and the second grandson on mine. He is our first child and the love of our lives. He is funny and sweet. He loves faces and he loves to talk and touch things. He loves his hands and he enjoys sucking his thumb. He loves to laugh and is ticklish on his sides and thighs. He has the most contagious smile and I can already tell that he has a huge heart. He is so much more than his diagnosis. He loves to look at people and colorful toys. He loves to be held and cuddled. He gives us life and beauty…he gives us purpose and joy…he gives us love and snuggles and laughter. My heart overflows each day when I look at him. And, I too, don’t see “it”. I don’t see the Down Syndrome…all I see is My Jack, my beloved, wonderful and beautiful son. I don’t think it’s fair, but I also know that he is perfect just the way he is and that I wouldn’t change a thing about him, now or never. I am concerned about the future..not for me, but for him. I want him to be happy and healthy and have a wonderful life and I believe he will. Some days I cry, but most days, I don’t even think about it. On hard days, we are caught between 2 extremes constantly…not understanding and understanding…not thinking it’s fair and not wanting to change a thing. The last thing I or my husband want to hear is someone identify our little boy by his diagnosis. So please, please, please…don’t refer to our son as “downs”. That is not who HE is. He is Jack. And he happens to have a genetic disorder called Down Syndrome.

Monday, November 9, 2009

4 Months old and Halloween

Well, I can't believe it!  Our little Jack is 4 months old.  Wow how time flies.  He is such a cutie. Jack is holding his head up well now and turning over from back to tummy all the time.  He pivots around to get the toy he wants and is constantly reaching for our faces and toys.  When I read books now, he looks at the pages and especially loves books with mirrors and music. He is smiling and laughing and is ticklish.  He is so precious and I couldn't be more proud to be his momma.

Jack started his new Daycare, Childgarden Child Development Center and we love it.  He seems to be stimulated and happy there. Their website is if you are interested.  We really love it.  Here is a blurp about them:

Founded in 2000, Childgarden Child Development Center is a joint program of Easter Seals Missouri and the St. Louis Arc.  Childgarden CDC has a long history of exceptional inclusive early education.  This means that children come to Childgarden from a wide range of backgrounds and with a wide variety of abilities.  Research has consistently shown that children with disabilities and those without thrive in inclusive educational environments.  Children with disabilities learn new skills and children without disabilities learn to solve problems creatively and compassionately.  More than 200 children from around the metropolitan area and 37 different zip codes come to Childgarden CDC for quality early education and therapy services.

We have been so pleased with Jack's teachers, LaCreda and Charlene.  Both have been with Childgarden for over 8 years and Jack seems to really enjoy them.  

He also has 2 new therapists; Teddie is his Occupational Therapist and Katie is his physical therapist.  Teddi and Katie are on staff at Childgarden.  Therefore, they can be sure that the teachers are implementing therapy in a variety of settings throughout the day.

Jack gets therapy every week.  Both Teddie and Katie are inlove with him..he is such a flirt (just like dad) :)

A Note from Katie:

I just finished working with Jack today (11/11/09) and there will be a note in his cubby.  We had to do a 2 part session after Jack sucked his thumb and put himself to sleep during the first part- I had plenty of time today so I went back after lunch and we finished up.  I hate to try to make him work when he is obviously tired.  I am so impressed with his progress-he is getting so big and strong!

Have a great afternoon!

Michael has class 4 nights per week and all day on Saturdays right now, so Jack and I are getting a lot of alone time, which is just fine.  I usually pick him up from day care around 4:30 and we head home.  I get dinner ready for Michael and then feed Jack, a little play time with Jack, bath time with Jack, storytime and then bed time by 7:30.  Michael usually gets home around 8:30, so we have a little time in the evenings together. I try to wake Jack up around 9:00 pm for one more feeding, which he usually sleeps right through.  He is in his crib now for the most part.  I think he is sleeping better and we are too, but it is really hard for me.  I love waking up and seeing him right beside us in his bassinet, but he was outgrowing it was time to move on. 

Jack just got 4 vaccines last week and I got my H1N1 vaccine today!  I was so happy to finally get it.  Michael will get his next week.  Jack can't get vaccinated for seasonal or H1N1 flu until he is 6 months December. 

For Halloween, we stayed at home and just took it easy.  Life is so packed for us right now that we have to take moments on the weekends to just chill as a family.The day before Halloween, Jack's little classroom had a Halloween Party and I went to it.  THey combined the toddlers with the babies in the indoor play room.  Here are some pics from it:

please note: Jack spit up all over his pumpkin outfit, which is why he is wearing regular clothes :(

Here is what he was wearing:

We are getting our first family portraits taken on November 15th and I can't wait!  I am sure it will be fun. I hope we can little Jack to smile for the camera.

Here are some recent pics of our little bit:

Jack will have surgery again on December 18th for the hernia he has developed since his last surgery.  It should be an outpatient surgery and the surgeon doesn't expect any complications.  Please keep him in your thoughts and prayers that day and Michael and me too...the anesthesia part is always very hard.

We are heading to Denver, CO again this year for Thanksgiving and can't wait to be with family.  Then, my parents are coming up in December for a little Christmas visit and we are hoping to make it out to Bellingham and Seattle in the spring.  We want everyone to see our little Jack!  He truly is a blessing.

I'll continue to keep you posted as life continues to move along.  Thanks for listening!!