Hometown: Flowery Branch
Down Syndrome, Mild Conjestive Heart Failure, AV Canal Defect
Favorite Character: Mickey Mouse
Favorite Disney Celebrity: Miley Cyrus
Favorite Singer or Band: Fresh Beat Band
Favorite Song: Hot Dog Song- Mickey Mouse Clubhouse
Favorite Food: Cold spaghetti pasta, cake and yogurt
Favorite TV Show: Mickey Mouse Club
Favorite Movie: Yo Gabba Gabba
Favorite Color: Blue
Sport/Hobby: Playing with brothers, reading or karate with brothers
Favorite Bert Show Member: Mommy says, “Jeff”
WDW Souvenir: Mickey ears
When grow up I want to be: An example for others
I’m looking forward to: Meeting Mickey
My parents are looking forward to: This will be Noah’s first time to Disney, first plane ride and longest time he and his brothers will have to relax and have fun with mom!
Letter to Noah from his mom, Tara
Monday, February 20, 2012
You are extraordinary. You continue to touch people’s lives in a positive way wherever we go. You mesmerize me with your awesome ability to focus on the here and now and the necessities in life and you can so easily disregard insignificant, frivolous, shall concerns that often overwhelm our society. I believe that you have an unmatched ability to separate the negative from any situation, that is when you want to.
The night you were born I sat on the stool next to you all night long and it hurt me so that I couldn’t touch more than that slight clutch of your foot under the oxygen hood, but that wasn’t the focus of all of my attention that night. Looking at you under all the monitor wires, IV, and your oxygen tent, I was absolutely deeply affected by your presence alone. I will always be so grateful for the time we spent together that night getting to know each other. I saw you for how beautiful you were. How enchanted I was. However, I was nervous too because I was realizing that this new found sensation inside that you were going to live a different path than I had expected. I did not know yet the issues of the heart. I knew nothing yet of down syndrome. I did not see the extensive health challenges that you would face. I did not see infections. I did not see ambulances. I did not see countless trips to the ER. I did not see how difficult it would be for so many needles to find your tiny veins and I did not see the need for 13 medical specialists and I did not see the needs for countless therapists, OT speech, PT. I didn’t see aspirating, reoccurring pneumonias, none of these things. I didn’t know any of these things would follow that night.
Let me share with you what I did see. I saw something more overwhelming than any of those things. I saw such a beautiful and peaceful soul in front of me. I saw an absolutely beautiful boy that could only be compared in my mind to a true angel on earth. I sat there in awe not knowing of the things that would follow and I thank God for you over and over. It was if I understood but didn’t have any of the details yet.
That night was a blessing from God that would only help to heal my strength in all of our journeys together because inevitably the rest did follow and continues to follow, but God grants us strength and Noah, during our tough times you set the path. You teach me. You inspire me with your strength and perseverance. I am not sure what our hardest obstacle has been because you and I always imply have done what we needed to get through them.
Perhaps I should share with you the sixth night after you were born. This was the night before the test results were due back that would confirm that you had Down Syndrome. I had returned home from being with you in the NIC unit and I drove into the garage at home and I parked our van and I cried. I mean I really cried. I hated leaving you at that hospital for anything, but I also had your brothers that I needed to check on at home. So in this overwhelming moment I cried and I screamed and I screamed loudly to God please Lord if this down syndrome thing can pass us by, please let it. But if this is your path for us, please Lord give me the strength and the ability to do what I must for my son. And then I wiped my tears and I went on.
The next day I was pulled aside by a doctor and nurse at the NIC unit and taken to a quiet isolated room and was officially informed that you had down syndrome. I simply said okay. Now what? The doctor proceeded to rattle on some statistics and such, but interrupted his own thoughts saying to me you certainly seem to be handling this news well and I said to him, doctor, all children have obstacles. I just happen to know more about the ones that Noah will face.
Since then I researched to help you, trying to learn all that I can about your struggles medically. But as for your extra chromosome, to me that is now what I feel empowers you to make more of a positive difference in this world in your five years versus what most people do in their lifetimes. As I have learned more about down syndrome, it doesn’t fear me as it once did. Instead, I see it as a gift of sorts and I thank God for trusting me and having the faith in me to give me you.
Noah you continue to fascinate me and the people that you bring in to our life.
Last night here in Disney I watched you dance. It is so hard to describe the happiness that I felt. Again I watched you in awe. You were dancing with Mickey and his friends and I can only describe the feeling as what Heaven may feel like. To see how incredibly happy you were. How happy you made me. This truly has been a magical trip. I want you always to remember everyone you have met here because Noah these people have a special place in Heaven awaiting for them. So many here have said to me that they don’t know how I manage to do what I do and I think that is so silly because I’m simply a woman that decided to have children and I take care of them no matter what challenges arise.
It is actually these people with Bert’s Big Adventure that go the extra step and aggressively seek out extraordinary children like yourself and they embrace them and they instantly fall in love with them. Bert’s Big Adventure staff, they are the smart fortunate ones that sees what too much of society doesn’t. They are the ones that go looking for you and I can only speak of how admirable they are.
This trip Bert’s Big Adventure has granted for you and your brothers and I surpasses any expectations we could ever have had. It truly has been magical. In fact, I found it difficult to speak to the staff as they in my eyes absolutely are magnificent people and I am humbled around them by their generosity and selfless ways. So I am thankful to have at least been able to give them something in return, which is the ability to meet you Noah. I have witnessed how you have brought smiles to their world these past few days as well. It has been such an honor to be able to accompany you on this trip my son.
God continues to bless us so very much and it has been such an honor to be your mother and I am so very grateful that you have led us in this beautiful chapter of Bert’s Big Adventure.
I love you so much Noah Boah, Mommy.