and this year I am ahead of the game (sort of)...October is National Down Syndrome Awareness month, so I am joining with my other DS bloggers..the goal is to post everyday in October...this should prove to be interesting seeing I can barely post once a week..not that I lack in things to say, just the time to say them these days.. Grab This Button
Commit to blogging in your blog everyday for the month of October (which is Down syndrome Awareness Month).
And then...um...blog in your blog everyday for the month of October!
You can choose to write about life with DS or...not. It's up to you. But if you at least mention the challenge and start writing EVERYDAY it's bound to go NOTICED. Personally, I find that I go back and forth, sometimes I write about DS because hey, it's a part of our life, and sometimes I don't, because hey, guess what? It's just a part of our life!
Here's step 4: Grab the button (by clicking the link that says "Grab this Button above") designed by the lovely RK so people will recognize that we're doing something here! Power in numbers, baby! The button''ll link back to this post and hopefully more people will sign up to participate in the challenge!
nothing like blog silence after a post like that last one...sorry, friends, I was a bit beat down last week...this week has been much better! I heard Stephen Curtis Chapman's wife talking about her tragic situation and she said something that resonated with me...she said," I kept crying out to God, asking God "why," but finally realized that the world is full of suffering and he replied back "why not?" She said it became apparent that she was to be a good steward of the suffering. While I cannot imagine being a good steward after losing a child, I can say that I can be a steward and an advocate for my precious son (and all of my kids) even to those that may be unaware of the things he can do and the support available to help children with DS achieve their full potential. Not saying I won't have bad days, but I am committed to being a better steward!
Today Parker is 16 months old. We have come so far and I am painfully aware that he is growing up. He has lost that "baby" feel, is stretching to that toddler stage. He wants his independence and is quick to find it. He is crawling, climbing, and cruising everywhere. Last night he pulled a bowl off of my end table and glass shattered everywhere. Gone are the days where I can "run to the laundry room to start the wash.." He needs a constant eye close by. His favorite new thing is to stand on the windowsill and look outside. He is so cute in the window looking out, "talking" to the things outside. It is a whole new world for him and watching the excitement in his eyes as he discovers these new things fills me with pride and excitement. He also loves to crawl and slide down his slide in his room. He scoots his bottom to the edge and wildly slides down even if there is no one there to catch him. Fortunately I have many willing "catchers" as he wants to slide over and over again! He has cut 3 teeth in the last month. Two front ones are in and another coming in up top near the front two. I even think he is growing more hair, a girl can hope,right? I keep reminding myself that Madeline didn't have hair until she was 4... The girls gave him a "mohawk" after his bath the other day, ah, the fun we have with our little brother! :)
His scar is healing nicely, here we are 9 weeks post surgery. The "bump" is still there, but I couldn't get a good angle for those of you still asking me. Next time! This boy is hard to catch these days!
Honesty. It's the best policy. I was taught that all my life. We teach the kids the same thing. So, I will fess up, honestly, I have been struggling and I am beat down. Parker is making great strides, doing amazing things, having tremendous gains and impressing everyone around him. His therapists want to know what I am doing "differently." People continue to comment, "he's so alert, engaged, not missing a thing.."
I am truly grateful and know I should be dancing and jumping around praising the Lord for his goodness, but the enemy has my number and he's taking me for a spin.
I continue to be disgusted and disappointed with people that just dismiss kids and adults with DS. And we aren't just talking about "ignorant, uneducated folks.." Many physicians and educators (it appears many special ed teachers are the worst offenders)feel the same way. Their thought process of "they have DS, so they can't do that anyways" seems to permeate society. They refuse to acknowledge that yes, children with DS have metabolic issues that need addressed and that their thyroids and diets DO matter and affect cognitive function. They seem comfortable just telling parents, "well they have DS." A friend of mine is in a battle with the school system because they have removed her son completely from the middle school classroom. And, he is fully capable of learning. Educators want to modify and tell you to accept, not expect. That just doesn't work for me. We don't "accept" from our typical kids nor will we from Parker. Last time I checked "typical" kids with behavior and academic problems were not removed from the classroom. Seems to be quite the double standard. Problem is the more I talk to these parents with older kids the more I hear this comment. Time to start now researching the best place in America to live. I still believe that with work and effort, Parker can attend private school. I will continue to believe in that goal and make every effort to have him ready to "pass the tests." I can only hope and pray that the educators and administrators will be more open to this possibility than what I've experienced so far.
I now have enough knowledge on biochemistry and the genetic mutations and their affects on kids with DS to get an honorary degree. I have the bags under my eyes to prove it. I have come to terms with this reality and I've accepted we better address it fast. I've started his regime and I will say it makes a tremendous difference. I know this is a touchy subject, but I've done my research and I believe this information should be given to parents after receiving a diagnosis. It has hope and encouragement and the sooner you start the better off you are. I also understand the people that say, "not my baby..what if he's different..I will wait to see.." I was there too. I talked to enough people and did enough research and I'm not comfortable "waiting to see" because I know what will ultimately happen. Find some families with kids older than 5-6 and see what they say..then find the ones with teens and or older...you'll be convinced too.
Today I signed Parker up for "lists." Lists that I don't truly understand nor want to think about, but at a friend's urging I went ahead and did it since it takes up to 15 years to get approval. Parker is number 31,000 something on a list for assisted living. I probably would have broken down screaming had it not been so comical..woman on the phone asks me the following screening questions.." does he need help toileting himself, getting around, getting dressed?" Me..."yes, he's only 15 months old.." She.. "Does he read independently?" Me.. "well, no, as I mentioned he is only 15 months old.." OK, give me your info and I will add him to list... Good thing I don't have to do that everyday. Add that experience to the list with open heart surgery. Don't want to have to go there.
We did receive one of those divine meetings Saturday that gave me a lift. The kids did a triathalon and I met a Mom whose 10 yr old daughter has DS. She was competiting in the tri. Amazing young lady, gifted swimmer and runner. All of you know how athletic and competitive I am..I grieve the "loss" of athletics for Parker and God showed up to tell me not to "accept," but to expect! Thank you!!!
So, forgive the rant. It is over. I am mad at myself for not being able to shake the enemy and his taunting. I write this honest post because I know many of my sisters traveling this journey feel these same things, maybe some of you feel like they can't be spoken. Far be it from me not to be honest. God is greater than all of this and has great plans for our lives and Parker's. Parker is such a gift and his new sense of humor and responsiveness quite funny. The irony of all of this is the things people say and assume about him because of his diagnosis are so wrong and so untrue at this point. Hoping people can see him through the right eyes and not assume. Guess part of our role in this journey is to help them see that. Guess he has the right Mom for that...one willing to tell you honestly what she thinks and passionately plead for what is right!
Matthew 11:28 "Come to me, all you who are weary and burdened, and I will give you rest."
Isaiah 40:31 "but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.Jeremiah 29:11 Our unexpected journey with Down syndrome, babies with heart conditions, T21, and AVSD.
Lara, 40 year old wife to Michael (married 17 years, best years of my life)! Mom to 4 wonderful kids! Taylor, 11, Mallory, 8, Madeline, 6, and Parker born 5/23/09. We found out after delivery Parker has Down syndrome and a complete AVSD. He was scheduled to have open heart surgery at 4-6months, but God intervened! His surgery was postponed until July 2010 and God healed his VSD hole in the process. So, on July 20, 2010, Parker had open heart surgery to repair his transitional AV canal defect. He was in ICU for less than 24hours and home in 72 hours. We never looked back! I own an Executive Search Firm focused on Accounting/Financial placement (used to work in Big 4). Actively involved in my kids activites and school; all are competitive swimmers and son Taylor plays tournament baseball. Girls do tumbling as well. Avid runner and boot camp fanatic. Used to be a competitive figure skater growing up. LOVE to shop, ebay/etsy crazed, addicted to Starbucks non-fat lattes, a child of the KING, thankful that we are saved by faith and grace!