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.

The news that rocked my world.

Today marks the 2 year anniversary of one of the most memorable days of my life. On June 30, 2009, we found out that Addie had Down Syndrome. I thought that my life would never be the same, and I have to say that it hasn't. It is amazing how news that I was never ready for would make my life so much better. We have been blessed beyond measure by Addie and her 47th chromosome. I am inspired by her persistance. I am amazed by her ability and determination. I am so glad she is who she is. She has changed my life and most importantly, she has changed my heart. Tyler gave me the gift of becoming a Mother and Addie made me an even better one. Today I am thankful for God creating her with a little something extra!

"What happened?"

Best friends. She is just about to lick the powdered sugar off his face!

My Princess

 We recently went to the beach and had such a great time! We had a lot of one-on-one time with Tyler, thanks to loving grandparents to watch Addie. We needed this time together. We went to the beach, movies and played the games that he wanted to play. We laughed as we played in the waves or "major crushers" as he calls them. We looked at starfish and ran up a huge sand hill. It was an amazing blessing to focus just on him for a while.

Handsome boy

My love

 As usual, I had a list of "therapy" things to do with Addie while we were on vacation. But, I wanted all of us to have a relaxing week, so we did none of it... and boy, did that feel good! There were no tears, from Addie or myself. We just played and snuggled and loved each other.

Now that we are home, we are back into therapy. Addie got her custom made orthotics and special shoes this week. She has very weak ankles and these are specifically made to stabilize her when walking. She seems to not mind them at all, for which I am so grateful because she has to wear them for hours a day. We have also been using Talk-Tools therapy items with Addie. They are designed to improve her facial and mouth muscles for improved speech clarity. She is currently on the 3rd straw of an 8 straw series. She is doing amazing well and we are so proud of her.

Addie with her new orthotics and sneakers. 

They obviously don't hold her back from wrestling.

Therapy straw #3

Yup, she's awesome!

If my girl has to wear orthotics, they have to be cute :)

Addie

People always seem to want to know if we knew Addie had Down Syndrome before she was born. I am often afraid that people are asking because they assume I would not have wanted her had I known "the truth". The truth is, we did know she had Down Syndrome and loved and wanted her as much as we wanted our Tyler. I remember getting the phone call from genetic counselor saying that she did in fact have Trisomy 21. At first I could saying nothing but "okay" and then she quickly asked if my husband and I had talked about what we like to do. That was the moment when my Mommy claws came out. I told her we were obviously keeping our baby. I suppose to her and the rest of the world, that decision was not so obvious. Considering the fact that 92% of babies with a prenatal diagnosis of Down Syndrome are aborted. Yes, I said 92%... sickening. Since that phone call, I have not stopped being extra protective of my girl. I also know that as the Mom, I have a very important job to do. And my job is to teach her that she is perfect just the way she is. So, when people choose to stare at us at the grocery store, I choose to teach Addie to smile and wave at them. 

Being the Mom of a child with special needs can be overwhelming at times and I so often pray that the world will view her just as her brother does. He says, "She is just so beautiful, why can't I marry Addie"? She is perfect in his eyes. This morning was one of those overwhelming mornings that everything seemed to go wrong. Addie didn't take a morning nap, I was exhausted, Tyler was bored and wanted to get to the playground, the juice spilled all over my bag... etc.  Then, a moment that I have been praying for happened. We were playing at the playground and a little girl with Down Syndrome came over with her Mom and brother. It so happens that the Mom is involved in a monthly meet up for families like ours. This is what I have been waiting for. To get involved, to not feel alone, to have friends to go to with questions about schools, doctors and therapists.  Oh, my excitement! I wanted to get up and hug her right there! Sitting at the picnic bench with her and her beautiful children made my day not seem overwhelming at all. I was just a regular Mom. 

So, I'm blogging now

I have been saying to my husband that I am going to start a blog lately. I am not exactly sure why I am starting now. I am not a "journaler", so hopefully this will serve as a wonderful place of memories for my children to look back on. Consider this my love story to my husband, my children and all those who love and support us. Enjoy!

 6 years ago we started on our long journey to these wonderful human beings we are now raising. I never thought the road would be so long or so difficult, but every minute has been worth it. Tyler is 4... going on 16 and he is the funniest, craziest little boy that I have ever met. Addie is now 19 months old and she is our precious princess. Addie was born with an extra 21st chromosome (Down Syndrome). I am sure a lot of this blog will be dedicated to DS issues because I am just a crazy researching Mom, but DS certainly does not define Addie or who we are as a family.

Now, back to story of how my little miracles came about. Tyler was conceived after 9 months of fertility treatments. I was thrilled beyond belief and he was everything I ever dreamed of. When he was 1, we decided to try for baby #2. This did not prove to be so easy, if you call 9 months of fertility treatments easy. After many months of failed IUI's and IVF's, we gave ourselves a break. I told my girlfriends one night at dinner that we were considering adoption, but little did I know that my princess was already growing inside me! If you have never been shocked by a pregnancy that you never expected to happen, you are really missing out. It is the most amazing feeling! At 18 weeks we found out that our baby had Down Syndrome and more importantly that we were having a girl! Tyler and Addie are perfect and best friends and everything I ever dreamed of. I am who I am because of them.

I hope you enjoy hearing about our daily craziness!