Thankful A to Z, E and F

E

I am thankful for Early Intervention. As much as I struggle with balance in my life, I understand the value that EI lends. It has seen us through many issues, the most marked being feeding issues. To me it is not the be all and end all of what helps Jack in his development, but it is a fine compass along the way, guiding me in the right direction, keeping me on the right path, and educating me on the hows and whys of what we need to do. Without it I would probably be unclear on what steps to take, and when. And it is nice to have the people involved recognize and remind you that you are doing a good job. We have the good fortune to have Jack attend a highly regarded clinic in our area, born out of two mothers' desires to provide better resources for their sons with DS, and other children like them. That was over 30 years ago, and the program is still going strong.

F

Friends and Family. I am encompassing this in one, otherwise I would be here for a year singing the accolades of everyone in my life. I will keep it short and sweet. Thank you, my friends and family, for reaching out in word or deed during the best and worst of times. I am very lucky.

Thankful A to Z, C and D

C

I am thankful for my computer. When we first got Jack's diagnosis, it was my lifeline to a world out there that understood me. Without this piece of technology, I would have been left alone in my head to worry and wonder, but instead I was allowed a glimpse into a life not much different than most, and it calmed me as much as I possibly could be at that time. It has allowed me to make friends from all over the world who share the common bond of life with a child with Down syndrome. It allows me access to resources and people who guide me on my journey. And, it allows me to blog!

D

D is for our daughter. She was the first one to question my grief over Jack's diagnosis. One who put my worries into perspective when I was letting fear own me. She has been an advocate not only for Jack, but for anyone who would be considered the underdog. She has one of the most sympathetic and empathetic hearts I know for people who may be less fortunate, or are treated as such. She calls Jack her hero, but honestly, she is one of mine. And she is only 10. She has a wise old soul, which I am certain must be older than mine. Jack does not know how lucky he is to have her in his corner, but he will someday.

Thankful A to Z, A and B

Fellow blogger Cathy at A Walk in Lily's Garden has shared a wonderful idea for blogging this month she calls Thankful A to Z, and I am encouraged to give it a try. Given that it is already mid-November, and I am not exactly a shining example of timely blogging, I will have to do the condensed version with 2 letters a day. I certainly cannot pass up an opportunity to express my gratitudes in an organized fashion! I tried to do a weekly one last year, and though my failure in no way expressed my lack of gratitude, it did express my lack of organization and commitment. So, without further ado, Thankful A to Z....

A

I am thankful for Add-A- Bands. Jack has very lax hip flexors. His usual way to get in and out of the sit position (if I was not fast enough to stop him) was to do the splits. While admirable to all of us stiff-jointed people out there, and effective for him, this way of moving is not conducive to the gross motor development necessary to crawl, kneel, and eventually walk. Also, his lack of stability in that part of his body does not provide him an adequate base for supporting his body for proper gait. Enter Add-A-Bands. Similar to Hip Helpers, but adjustable, they prevent him from spreading his legs too far apart, and give him a chance to learn to move more appropriately. While I hate the fact that he needs an apparatus to help him do what comes naturally to most children, I am happy that they are available to him, and they seem to be helping.

B

I am thankful for bread. Food of the world, the love of fellow carb junkies, great with wine and cheese.... But most importantly at this point in our lives, one of Jack's favorite foods, and one of his regular signs. When there is whine (not just wine...), there is bread. Torn into little bits like we are feeding a pigeon, he happily and quietly munches on bread while we are preparing his meal, just like at any other fine dining establishment. So, for my own sanity, I am thankful for bread!

Less is more.

Therapy. An available resource. A useful tool. A thorn in my side.

I love Jack's therapists. They are wonderful, insightful, intelligent, and want what I want. The best for Jack.

However, I don't love therapy. I don't love driving to clinic 3 times a week, with nearly 3 hours a week just in the car. I don't love how it breaks up our week and upsets Jack's naptime. I don't love how unnatural it sometimes feels to implement something meant to help Jack, when it interrupts the natural flow of our day, the "mother and son"-ness, I guess. I don't love the guilt that comes on the heels of raising a child who has special needs. The guilt that says, "If you do not take all that is available to you, if you do not take all that he qualifies for, you are shorting your child." I don't love the strange tools and unusual manners of doing things, all in the name of making things more normal from a societal standpoint. I don't love that life just does not feel like it belongs to us. Sometimes I feel like life belongs to Ds, and that is not OK with me.

So, I had a breakdown. And I let his therapists know everything I felt. And I asked for permission to be Jack's mother more, and his therapist less. And you know what? They understood. And they thanked me for my honesty, and said they wished more parents would let them know how they were feeling, because they are on the outside looking in. Most don't know what it is like to raise a child with special needs, much less other children as well, and it is useful for them to hear that enough is enough sometimes.

I wondered, is he getting any farther on weekly therapies than he would on less? We assessed Jack's needs and determined that he would be just fine on bi-monthly OT and PT, and we will assess speech on-going. And yes, I can just be his mom sometimes. And it is OK to say "Today I do not feel like doing XYZ." Guilt was not invited into the decision making this time. Just everyone who wanted the best for Jack. Happy children come from happy families, and positive outcomes come from positive experiences, so if you are feeling burnt out, speak up. If it is too much, say so. A good therapist wants what is best for not only your child, but your family as a whole.

Wordless Wednesday

My kids' names

I recently got tagged by Jennie at A Little Something Extra For Us to talk today about how my children got their names.

My firstborn came with a long list of possibilities. She had the longest list out of the three kids. Maybe because she was a girl, maybe because she was the firstborn, but somewhere in a box I have a scrap with a list of about 30 name combinations. Not agreeing on a namesake, our criteria was simple. Something not over-used, easy to spell, and never mispronounced. Of course, pretty, too. The name Tessa resonated for both of us for different reasons, but in the end we chose Tessa Morgan because it was beautiful, just like our girl.

Harrison Charles has the most namesakes. He is named after his paternal great grandfather's last name, and my grandfather's first name. His was an easy pick, and suits him well. We always thought that our firstborn son would likely be a Harrison.

Our little Jack was not always Jack, but there was something always pointing me in that direction. Whether it was a dream someone had, or more than coincidental circumstances surrounding the name, arrows kept pointing to Jack. When I began to research the name, I found it was a derivative of John, which means God is gracious. While I did not feel His grace at the time, I hoped in time I would, and it was then I knew for sure that it was the right choice. His full name is Jackson Wayne. While we call him Jack, and have since the beginning, we felt he needed a name that flowed better with our last name while allowing us to still call him Jack. The name Wayne comes from his grandpa's middle name. We lost his grandpa Marv just a week before that big ultrasound where we found out we were expecting a son and so much more. We like to think that grandpa is a special angel for our Jack.

Wordless Wednesday