World Down Syndrome Day!!!

Tomorrow, March 21st, is World Down Syndrome Day. I have been thinking about my role in this day and how to share our joy as well as raise awareness. I decided to share a letter that I wrote to Addie. I want everyone to know that she is amazing, that Down Syndrome is amazing and our family is better because of that little extra chromosome. We are blessed beyond belief!

So, this World Down Syndrome Day, I encourage you to get involved, tell your story (tell our story!) and help make the world a better place for all the individuals with Down Syndrome out there.

Dear Addie,
I am writing you this letter for World Down Syndrome Day. Today is a day to celebrate you and your amazing accomplishments. You have amazed me from the beginning, my dear. I love you in a way that I will never be able to describe to you. You have shown me and our whole family love that is true and pure. You taught me to love and advocate fiercely. You taught me to accept and not judge. You taught your brother that different is good. You taught your Daddy how much a little girl adores her father.

You are growing into such an amazing little girl, Addie! You run around the house (and pretty much everywhere) like you own the place. And, if I am being honest, you really do! You guide conversations and play with so few words. Your ability to communicate amazes me every day. I love that you are now making choices and gaining independence, even if it means you shake your head no, throw up your hands and run away from me. You are a little dare devil, trying to do everything your brother does. That is a little scary for Mommy, but inside I am beaming seeing you try. To say that you are passionate, is a bit of an understatement. For good and for bad, you know what you want and how to get it.

Your determination never ceases to amaze me.  I love the way you sneak into the pantry while I am cooking and bring out a snack of your choice. I love the way you try every button on the remote when you want Tyler to stop watching tv. I love the way you grab my face to look at you if I don't see what sign you are doing. I love that you can tell me what you want to do or where you want to play. I love the way you are fearless and try to play on every part of the playground. I love the way you always ask to wear a coat, even though it is 80 degrees outside. I love the way you take pajama pants out of your drawer and put them on over you clothes.

I know you have faced obstacles like walking and learning sign language. I know this is not easy stuff for you, but you did it! You did, you did it, you did it! The delight on your face when you run around outside and chase Tyler or when you learn a new sign makes my heart leap! I hope to face every challenge in my life the way you face yours. You make me want to work harder.

This week, you learned how to say "lick". It is the first new word you have said in a while. Watching you tonight entertain Daddy and I saying it and then clapping for yourself was nothing short of amazing. I told Daddy that these are the moments most families do not get to have. Thank you for moments like this. It is a gift to be able to celebrate with you!

So, as I think of you and how that extra chromosome has changed me, I think of a few things. I think of love, because you love us with your whole being. I think of laughter, because you have added to much of it to our lives. I think of passion, because you are passionate about everything you do. I think of patience, because you have taught me how to be patient. I think if kindness, because your brother has learned more about being kind from you than I could ever have taught him. I think of those who support you and our family. You have no idea how many people marvel at watching you grow into such an amazing, intelligent, loving, funny little girl.

At 2 years old, you are changing peoples' perceptions about Down Syndrome and about being different in general. You have done more good in your short life than I could have ever imagined. You have the gift of softening people and making them look at what is truly important. I feel blessed today and every day to be your mother.

You are amazing Addie girl! Happy World Down Syndrome Day!

Love,
Mommy

Praying for strength

As Addie gets closer to turning two, I have officially started her preschool search. There are a few schools in town that have been highly recommended by friends that are on my list to visit. I called one today and was warmly greeted and as we were about to set up my visit, I mentioned that Addie has Down Syndrome. The receptionist stopped the visit talk and said it would be best for me to talk to the owner/director.  I hope that I misunderstood her pause and shift in conversation.  I try to remain optimistic as I await her call.

I have been through this before with one other school,  but I did not expect it today. My heart was again broken by the stereotypes that are placed on my daughter. I remember looking for schools for Tyler and feeling that they were selling themselves to me and now I feel the opposite. Why should I have to sell them on accepting my daughter? She is perfectly created and there is so much more to her than just her 47th chromosome. Perhaps these people who do not feel equipped to teach Addie have never met someone with Down Syndrome because if they have, I am positive they would feel differently. I know that if they met my Addie, they would love her just as we do.

As I continue this search for the perfect school for Addie, I pray for the strength of a warrior. I know I am in for a fight but I know Addie deserves to go to a "regular" preschool as much as any other kid and I know she will succeed. I just want someone to give her a chance and I promise they will not be disappointed.

We have a walker on our hands!

Today started like any other... Jeff taking Tyler to school and me getting myself and Addie ready for Physical Therapy. I love our PT and I was telling her how I was having difficulty with some of Addie's exercises. By difficulty, I mean Addie would scream and cry and grip on to me until I gave up. Yikes! I have been battling with myself whether I should push her beyond the tears or just be her Momma and wait until she is ready to do things. I chose the Momma role, so lately we have been pretty lax about therapy practice and we have just been having fun and letting her do things on her own time. I chose to believe in Addie and her abilities. Anyway, back to PT time. In the middle of the session, Addie walked! Not just a few steps, but 16 strong and steady steps!

When Jeff got home, we had Addie walk back and forth between us and she walked 21 steps!!! She even walked by herself across the living room to her bathroom for bathtime. I know that mostly everyone's kids walk eventually, but I promise you this is different. This is magical. Addie went from taking 2-3 quick and unsteady steps one day to walking across the house the next. When she walked to me she hugged me so close and laughed and clapped her hands. She was thrilled with herself. Yes, my darling, you should be proud!

There is something amazing about being a parent to a child with special needs. You get to have these moments that are so ordinary for others, feel like they were heaven sent. Addie is amazing. I am so thankful she chose this day to start walking. I will never forget it. I am also so glad she chose me to be her Momma!

I will post a video soon... hopefully :)

Best News Ever!!!

Today went to visit with her Cardiologist. I have been nervous for weeks. Before I left to take Addie to her appointment, we prayed as a family and Tyler placed his little hand over her heart. What an amazing boy he is!

Addie was born with 2 moderate holes in her heart (ASD and VSD). They caused severe pulimonory hypertension. We were actually told to "wait for signs of heart failure". Talk about devastating. Our goal was to get her big enough to be able to survive such an invasive surgery. Then one day, we went in for her regular EKG and Echo. When the doctor came in and said that she was getting better and that she did not need to see us for 6 months, I seriously was in disbelief. How could a child whose heart was so sick just become well? I believe it was the vigilent prayers of our family, friends and amazing supporters. I was amazed by God's healing power, but I knew we were not totally out of the woods yet.

This time last year, she was doing very well and we knew she would not need major "Open Heart Surgery". There was potential for her to need a heart catheterization to fix her ASD, that is what we were waiting to hear about today. As we waited to have her EKG and Echo today, I met a Mom whose son had already had 2 major heart surgeries and would need at least 2 more. He went into heart failure 3 weeks ago. He was only 3 months old. My heart broke as I sat there and listened to her tell their story. I realized that even if Addie's ASD needed to be fixed it would be relatively minor and she would be fine. I knew we were the lucky ones.

Then, came the news I have been waiting to here. She is PERFECT! She is HEALTHY! She will NEVER, not EVER need heart surgery of any kind! No catheterization, nothing!!! She was cleared for 2 years and the tiny holes that remain in her heart will never affect her. I cannot contain my excitement and tears. I am nothing short of amazed right now. How blessed we are that God chose to heal our daughter!

5 steps!

Addie took 5 steps yesterday and I still cannot contain my excitement!!! Her PT came yesterday and we started working with her as usual. Emily, the world's most amazing PT, decided to let go of Addie's legs and my girl walked, I mean, she really walked! And, she kept taking 4 steps in a row every time we tried.  As soon as PT was over I ran to call Jeff, and sent out a mass text message about the major accomplishment. I was hoping that Addie would have it in her to show Jeff her skills when he got home.

I am not sure what was sweeter, the laugh that came over Addie when she walked to one of us or the look on Jeff's face to see her do it. I have seen a single step here and there, but Jeff has never, not ever seen even one. His teary eyes said it all. Our little girl is growing up and we are so proud of her. My heart melted at the sight of his warmth for her. I love that man.

My one

Two weeks ago, Jeff and I attended a great friends' wedding in Lake Tahoe. How lucky we were to spend 4 beautiful days together! It was strange to be without our kids, but I must say that sightseeing in San Francisco and laying on the beaches of South Lake Tahoe more than kept us occupied. We talked and were actually able to listen to each other without someone crying, spilling something or needing one of us. It was a wonderful chance for us to reconnect, so thank you JR and Wendy for a great time!

It was very hard to leave the kids. My parents volunteered to watch them at our house, which made me feel so much better. I think any Mom has a hard time handing her kids over to anyone, but I felt it was especially hard with Addie. When I was pregnant with her, I thought about who would babysit her and be able to learn all the things that she needed, other than Jeff and I. Well, I have to say that I found "My One"... My Mom. She comes to visit us once a month (sometimes more) to see the kids, help me and be part of Addie's therapies. She is involved, tries to come up with new and more exciting ways for Addie to learn and loves, loves, loves my kids! Not to mention the fact that while she is teaching Addie and playing with Tyler, she is also cooking, cleaning and organizing things I never have time to do. She is a Supermom. She celebrates with me, laughs with me and cries with me. She knows when I am overwhelmed and steps right in. I have found my one and I will never forget how lucky I am to have her.

Addie had PE tubes put in her ears right after we returned from Tahoe. She had a moderate hearing loss because of the fluid in her ears and we were excited to get the tubes in. We are hoping this will help her imitate and make some new sounds. She had anesthesia in April during a tear duct surgery and everything went perfectly. This time, her heart rate went way down for a few minutes and they had to give her emergency meds to get it back up. The doctors said they had anticipated this because of her heart issues. I knew she had more of a chance to have difficulty with anesthesia, but I was devastated. I know that she was okay within a few minutes, but it was MY baby laying on that table, MY baby that was in danger. I think this incident and the fact that she visits with her Cardiologist soon are bringing up a lot of old feelings. The holes in her heart are closing and she will not need major open heart surgery, but her heart issues still effect her.  I am forever scarred by the thoughts of waiting for her to go into heart failure as a 5 pound piece of innocence. I am thankful every day for her improving health. But, I sure do hate the reminders that she still does have special health concerns. My sweet angel just doesn't deserve any of it.

Really?

At the risk of sounding completely redundant, I am so mad and furious and just completely shocked by what happened today. Addie went to the eye doctor to have her tear duct stent removed. Both of the kids did so unbelievably well at the appointment that we decided to go out for lunch. After we ate, Tyler and Addie were playing in the indoor playground. A mother, who was about my age, came in with her kids. She kindly asked how old Addie was and when I told her that she would be 20 months old in a few days, she was very surprised and turned away very quickly. The Mom kept watching Addie as she tried to climb the stairs to reach her brother, a task that she could easily do if I had not been afraid of some crazy kid knocking her down. As we played as we normally do, the Mom and the Dad of the family kept staring at us (Addie and I), not like, "Oh, she is so cute", but what I would call a "shit face". Then they actually proceeded to not allow either of their children near us. Umm... What? Do we have the plague or something?

I was bubbling with anger and thought of a million things I could have said. I, of course said nothing. I am sitting here still shocked and angry, but most of all sad. Sad for Addie, sad for those people who will never know that Addie is just like their kids and sad for their kids that saw their despicable example. I know this is not how the world views my daughter, but I also know that this is not the first or last time this will happen. Maybe I will start wearing a sign ... "Yes, she has Down Syndrome and no, your kids will not catch it". Some people.