Happy Down Syndrome Awareness Month!

“October is Down Syndrome Awareness Month, a chance to spread awareness.  During the month of October, we celebrate people with Down syndrome and make people aware of our abilities and accomplishments.  It’s not about celebrating disabilities, it’s about celebrating abilities.” Chris Burke

October is Down Syndrome Awareness Month, and let me just say that this time last year I don't think I even knew about it being in the month of October. I probably wasn't even aware.  See, when you aren't directly affected by something then you have a tendency to overlook it. This was the case with many things in my world. Not that I didn't care, or didn't want to, it was just that I was not educated or aware of certain things going on around me everyday.  That is one thing I can say I definitely learned in the last 10 months from having a son with DS.  Every day I find out something knew about children with special needs and I want to be aware of what they are going through and how I can help...   I am not ignorant anymore, and I don't live under a rock, in my little bubble where my life is "perfect" and "normal".  God rocked my boat 10 months ago, and I thought it was the end of the world. But I am here to tell you that everyday it gets better, and I am finally in a place where I am not sad anymore. It may have seemed like the end, but it was just the beginning to something beautiful and different. Something that I wasn't familiar with, but in time i've seen that Gavin is truly a blessing, not a hindrance.  I am so unbelievably grateful for this little boy.

Down syndrome is NOT a disease, its not a death sentence, and its certainly NOT a negative thing! DS is not the problem, its our society and how some people view it.... yes, most of these children do things at a slower pace physically and cognitively but they still do them! They are just like any of us, and deserve love just the same.

I want to personally challenge all of you to spread awareness this month... (well every month, but especially this one)... in ALL or the following 3 ways (or at least one):

1. Carry out a random act of kindness- everyday this month, do something kind for someone else...if can be anything you want as long as its from the heart, and there are no stipulations.

2. Share information with friends, family and your community- Here is some great information from The National Down Syndrome Society  and also some myths and facts.

3. Participate in a Down syndrome walk. Our local Buddy Walk is this coming Sunday and we would love to have you join our team, however if you do not live locally, you can reach out to your local Down syndrome association and find out when their walk is. If that doesn't sound like your cup of tea, consider donating to an organization.  If you would like to join our team and walk with us, or donate you can do so here.  To find a local Down syndrome organization near you, please visit this site.

I would like to share this video with you, in hopes that you will all share it to. Thank You.

Update

Its been a little while since I have given an update on Gavin.  He is now 6 1/2 months and seems to be doing great! We've had a ton of doctor appointments and therapies over the last week.

At his 6 month well baby check he weighed in at 18lbs, and 26 inches.  He is approximately in the 50%, which his pediatrician said is great. They usually go by a different weight and height chart in children with Down syndrome.


 He is progressing in his physical therapy and getting a little stronger everyday.  He has been sitting by himself for a short time but was reminded that hes actually only "propping" himself with his arms like a tripod. OH WELL! in my book, he is still sitting by himself.. and we are going to continue to praise him for the things that other people take for granted.  Before I know it he will be crawling so I am ok with him taking his time on reaching some of these goals.

At his ENT appointment, I was once again annoyed because I feel like I constantly get the run around there. No one seems to know anything and I see a different doctor or PA every time I go. They do a ton of different hearing tests but never know anything. Every time it comes back "inconclusive" So why am I going at this moment in time???? After voicing my concern, the doctor suggested we put him under anesthesia and clean out any build up in his extra narrow ear canals.  They cannot do this while he is awake because for one it will severely irritate him and also so that he will hold still.  Once everything is clear they will be able to see his ear drum and go ahead and put his tubes in.  Once tubes are in, and fluid is drained they will THEN do the ABR test AGAIN to determine how well or how little he is able to hear.  I know tubes are a pretty routine surgery that everyone tells me is no big deal however he will be only be 7 months and he will be under an hour and a half. With just getting tubes you are in and out in 15 min, but with cleaning and testing him afterwards he will be under a lot longer.  None of my boys have ever had to be put under and so I will admit that this makes me a little nervous. At least we will know whats going on with his hearing finally! So..... July 1st is the big day. Please keep G in your prayers.
Thanks!

World Down Syndrome Day 3-21

In honor of World Down Syndrome Day, I wanted to write about Down syndrome, and how to show awareness. Gavin is almost 4 months old now, and in those short 4 months I have learned so much. The way I think about life has changed, and through all of this, my heart has opened up and I have become so aware of many different disabilities that I didn't even know existed! This world may be full of pain and suffering, but it is also a world of beauty and love, selfless love.  Things may not go how you expect them to go, but you will find the beauty in them. I have feelings that I never dreamed I could feel.

As much as I have learned and grown, I still often asks myself, "why do you think you were chosen for this journey?" I may never know the answer but I sure try to figure it out. Maybe it's to teach me patience I am the most inpatient person in the world I am constantly hurrying from place to place. I lose my cool a lot on the kids when we are in a rush to get somewhere and they are dragging their feet. Maybe it's God's way of showing me that I have to find beauty even if it's in the package that I didn't expect I need to learn to love regardless of the cards that I am dealt. Call me a little materialistic or just crazy but I have a problem with symmetry and how you look. I had braces but my mid-line does not line up and therefore I want braces again. My nose is crooked so it drives me absolutely bonkers. I don't think I've told many people this but when Lukas was born one of his ears stuck out more than the other one and I wanted to have surgery on his ear so bad. Curtis called me crazy of course and we never did it. It still sometimes bothers me to this day. And I need to learn that it doesnt matter what someone looks like, or what they can and can't do, what matters is where their heart and soul are at.  Now looking back on it, I find it silly compared to everything else we're going through now. And lastly, maybe God decided to give us Gavin because he knows I have such a big heart for children or a sad heart and I want every child to be loved and appreciated. Whatever the reason is I know in my heart that our lives are changed for the better.

One of my favorite blogs is Noah's dad .  His son Noah has Down syndrome and their site is so informative and also very entertaining.  He answers a lot of questions from people all over the world. He does an awesome job at spreading awareness all the time, you all should check it out, if you haven't already. If you want to learn more about Down syndrome Rick, (Noah's dad) put together a post and it is very simple and straight forward. You can view that HERE .  Down syndrome does not define a person it's not who they are, it just happens to be something that they were diagnosed with. Gavin will be his own person, he will have his own identity. He may do things slower or more delayed  than other kids but he will still do them at his own pace and in his own time. 

So for National Down Syndrome Awareness Month, I am going to be raising awareness for Down syndrome.  If you would like ...please join me in letting the world know that Down syndrome is ok.   On his website he has 14 ideas to help you make the most of Down syndrome awareness month. I am challenging myself to do all 16 or at least most of them. One of them is to make an informational down syndrome video so I am going to use his video because I like is better lol. Please watch this video, it is very informative and you might just learn something you didn't know. 

 
Another option he suggested was to create a Down syndrome resource board on Pinterest. If you are not following me on Pinterest please do, because that is the next thing I am going to be working on.  I am also going to be posting a Down syndrome fact a day on my Facebook page.   And one of my favorite suggestions that he offered was to start a YouTube channel to share your videos of your little one. This way it can show other people how normal your life really is with a child with Down syndrome.  In my next post I will also be sharing top 10 blogs by families but other families raising a child with down syndrome I'll be sharing this on my blog sometime soon. Thank you Noah's dad for these awesome ideas.

The last thing I want to talk about is using the R word. Just because I had a child with down syndrome does not mean I automatically blocked the word retarded word from my vocabulary. After reading an article and watching this video clip,  I realized that it's very offensive to use that word even if you are not meaning it in that way.  Without thinking I would say phrases like "that's retarded" or "oh man, I cant believe I did that, I'm so retarded." I never used it in an offensive way and directed towards anyone.  I grew up using that word and it is very hard to break a long term habit but I am consciously aware of it and I am going to take the pledge.   Please take 30 seconds and watch this short film about why using the "R" word is wrong.

 There is actually a campaign called : "Spread the Word"- spread the word to end the word. Help raise awareness about the hurtfulness of using the r-word. 

We love our lil "G" so much and cannot imagine our lives without him.  Don't be scared of Down syndrome.  It truly is ok.  It saddens my heart to hear of so many people that abort babies that have Ds.  Maybe our world would be a happier place if we had more people with Down syndrome.

 

 Please join us tomorrow in wearing your blue and yellow to show awareness and support!  Support baby Gavin! Show him some love :)

  HAPPY DOWN SYNDROME DAY!!

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