March is an "extra" special month

We love the month of March for many reasons but at the top of the list is the countdown to March 21st which is significant in the Down syndrome community because we celebrate World Down Syndrome Day on this day. The significance is that our children are born with 3 copies of the 21st chromosome. As we countdown to this we do what we do everyday, we celebrate our beautiful and amazing children. Showing the world they are capable of much more than in the past they have been given credit for. Our children are not to be written off, thought of as unworthy or even ignored.  They are here to teach, show love and most of all be an important part of the world we live in. They deserve that chance! 

One of the things also highlighted this month, on March 5, was the official day to spread the word to end the "r-word" and teach others that it is not alright to use this dehumanizing word which many use daily incorrectly. Don't know what the "r-word" is please visit this page http://www.r-word.org/

In recognition of this day and this campaign check out this link to view an amazing video created that shows Lucas and many of our friends in. This is a very powerful message filled with beautiful imagery.  I can't help but to feel proud that my son is part of this movement to change the way people think.  Way to go!


Spread the Word to End the Word!
 

It takes a village

When we received the news that our son Lucas would be born with Down syndrome it felt like our world ended and every dream we had for our unborn baby was shattered in an instant. All because he would have 3 copies of the 21^st chromosome.  I remember feeling like I couldn’t breathe as a stream of tears endlessly raced down my face.  I still recall how small and alone I felt that day.  As I sit here today writing I see how much I have grown and my life has changed, for the better, because I have a child with Down syndrome.  I don’t have a life of sadness or regret but instead a full life of beauty and love beyond comprehension. 

One of the beauties in my life are the friends I have made on this journey who I now refer to as my family, my village.  The bonds which began through our children have grown into a strong support group of women who rely on each other for advice, understanding, friendship and most of all strength.  That’s why when one of us is in need we all stand tall for the one that needs comfort and care without hesitation.

Tonight, one of our little ones Annie Wojtowich is fighting for her life after open heart surgery and several complications that have impacted her recovery process.  Her parents, Arek and Monika, have been by her side since the surgery on February 10, 2014 and have most recently been trading shifts amongst themselves to also be home with their two other daughters Kelly and Nicole.  Annie’s health issues are complex and have been present since her birth on May 22, 2012.   She was born with Down syndrome and a congenital heart defect (Unbalanced AV Canal) and had her first open heart surgery procedure at 1 month old.  In addition, Annie’s heart stopped working for 7 minutes when she was 2 months old it was discovered she had Pulmonary Hypertension making her heart unable to be fixed.  The most recent heart surgery Annie had is an attempt to give her the best quality of life with the heart she currently has.    

This has been trying and extremely difficult on Annie’s parents so as a result our mom support group has put together a fundraiser to help the family with medical costs during their time of need.  It is our hope that sweet Annie soon be home with her family where she belongs.  We have faith that she will soon be able to put this behind her.

I think I speak for all the mom’s in my support group when I say we would do anything for Annie and love her as if she were our own daughter.  We are desperately trying to help Annie and her family in any way we can because that’s what family does.  

You can follow Annie’s story on Facebook at “Annie Golden Heart” and you can join our fundraising efforts at https://fundrazr.com/campaigns/8hdP8 to help this beautiful little girl.

Learning as I go

I used to think that I knew so much before Lucas was born and he has quickly shown me that there are many things that I didn't know or didn't even have a clue about.  He continues to help me be a better mom on a daily basis and makes me grow not only as a parent but also as a person.  Like any mom I only want the best for my son and I will do anything I can in my power to try and make that happen.  I mean seriously, I look at this face each day I know that I owe him the best of me and the foundation that will allow him to dream big dreams. 

 

 

So even though this mama can get tired from all the weekly therapies, various doctor visits and routine housekeeping I dig deep to keep it all together. I will admit it's not always easy. It's not always fun and often it is down right challenging. When you have a child that may have the deck stacked against them in some areas you worry about a lot of things but try not to let that bog you down. You have to take each day as it comes and learn as you go. Some things that certainly don't come easy to me.  But I am learning.

Some of the many people who help me learn are our amazingly talented therapists.  They have many times answered my questions, relieved my worry and boosted my confidence to be Lucas' advocate, voice and biggest champion.  They actually inspire me to pick up where they leave off after our weekly session so that Lucas remains challenged and a happy little learner.  Of course I know his limits and want him to be a kid but I also know that my son is very task-oriented and loves to learn! So I make sure we have fun and play to his strengths and make learning as fun as possible.  All this is part of the plan to keep him moving forward.

Today I decided to do something pretty simple but something I knew Lucas would enjoy.  It included language, fine motor skills, color recognition, numbers and forcing Lucas to use 2 hands since he is often left hand dominant. (weaker on his right side)  The activity was simple and included Boardmaker symbol cards, empty seasoning container, balls purchased from the dollar store and tons of celebration at the end. Did I mention we must have done this almost 30 times in a row?

What I learned today is that these simple activities are not only a time for me to be with my son but also to encourage him to keep learning and gaining confidence with his own skills. I am thankful that each day I learn something new from Lucas and those around me.  These are the times and moments I am most proud of in my life.  You see I also love to learn and it couldn't be more perfect that I learn side-by-side with my son and also have him be one of my best teachers.

Jumping on the trampoline

This weekend was a nice treat as we came home to find Lucas received his trampoline that his physical therapist ordered for him. Although Lucas is not walking completely independently this is just another tool that will assist him with strengthening his balance while also helping with balance. In order to fully introduce this to him we turned on some fun music and let him start moving. This video is his first time on his new toy!

Jumping, jumping....

This weekend was a nice treat as we came home to find Lucas received his trampoline that his physical therapist ordered for him. Although Lucas is not walking completely independently this is just another tool that will assist him with strengthening his balance while also helping with balance. In order to fully introduce this to him we turned on some fun music and let him start moving. This video is his first time on his new toy!

Special Delivery

These days I think Lucas gets more mail then we do whether it's some new clothes for a growing boy, a new therapeutic support item or just something fun from family and friends. Well this weekend got something from him new friend Jamie who lives in Tennessee.  She is the runner he was matched with through the organization  I Run 4 which is a movement that give the gift of mobility to others.  It is a relationship that is built through and emotional and mental bond.  We can say that we have been blessed to be matched with such a wonderful woman who checks in on Lucas and always is thinking of him.  This weekend we were so happy when we received a lovely gift from her and one that will be with Lucas for the rest of his life because it is so cute and meaningful.  Lucas loves his new buddy.

Lucas checking out his new buddy

Best of buddies singing together

Snow Days (Part 2)

Just like we got to enjoy outside with Lucas once the weather got better we also had to do a lot of entertaining inside. This was to keep us all sane as cabin fever was setting in! I think it is safe that we played with every toy, read every book (more than 20 times each), and did anything we could to make being snowed in for several days manageable. We had lots of fun and even got to put our Christmas stuff away sooner than usual.  Here are some of the items we all managed to do together while hanging out home. Lucas again had tons of fun as we kept him busy and intrigued with so many activities.