Written for September 28th, 2013
Hi there Connor,
Once again mom and dad have been slacking on writing notes to you. The bottom line is we've been having a lot of fun staying busy but that's still no excuse. I certainly want you to be able to look back and remember all this fun stuff when you get older so I better to get to writing (plus we know your fans are dying for updates).
About two weeks ago you hit a huge milestone. I can hardly believe I'm writing this but you turned ONE year old. For every baby turning one is a big deal but for you this marked a very important hurtle. Kids with CHARGE syndrome face an immense amount of complex medical issues of which you have covered more of them than not. It's pretty scary that statistics of kids with CHARGE syndrome are almost always measured by those that survive to the age of one and those that do not. Sadly at least one third of babies with CHARGE don't get to celebrate their first birthday. I say this not to be a downer but to bring awareness. Awareness of what a miracle you are, awareness of the complexity of CHARGE syndrome, and awareness for those special angels with CHARGE who we will not get to attend their first birthday parties here on earth (one who is very close to our hearts). We have a lot to be grateful for.
Clearly the dangers of your medical issues don't disappear suddenly because you are now a big one year old. We have a long journey ahead but we will continue to take it one step at a time. When you were born our goals and plans were measured in hours, eventually we graduated to days and then weeks. Finally when you came home from the hospital we started to measure things in months. The bottom line goal of year one was to survive. That included both you literally surviving as well as mommy and daddy keeping our heads above water. When I look back on this year we have done so much more than survive. I would be lying if I said it has been a walk in the park but I can truly say we are thriving. I couldn't be more proud of our little family and the amazing feats we have accomplished this year. Such big accomplishments called for a BIG celebration.
When mommy and daddy started talking about your birthday celebration we decided it had to go one of two ways, either very small with immediate family or the other end of the spectrum.......BIG time party. Mommy and daddy just kept thinking about all of the amazing people who helped us to get to this point and we couldn't imagine not sharing your special day with them (plus mommy loves parties). So as you probably guessed we went for big. We invited a lot of people. To be honest I don't have a number because the list kept growing. The RSVP list went about the same way. Mommy stopped counting for fear that daddy may have a heart attack. Mommy tried to plan every detail and I loved every second of it. We decided on a jungle animal theme and away we went. Daddy rented a bounce house for the kids to enjoy and made an awesome slide show of you, Grandma helped make lots of food, we bought and made lots of decorations, mommy baked tons of cupcakes, we filled a pinata with pounds and pounds of candy, mommy and daddy found all kinds of cool party favors for your friends, Gigi helped mommy get the house just perfect, and lots of your friends and aunts cooked and decorated to help out.
Mommy was a little worried when you woke up grumpy that morning but it was almost like you knew what a big day we had planned and when it was party time you were ready to go. As we first walked out of your room you seemed a little surprised and overwhelmed by all the people in your house but you adjusted pretty quickly. You definitely love being the center of attention and smiled as person after person stopped by to sneak a peak at the birthday boy. It was almost as if you were a rare exhibit on display that so many people had waited over a year to see. There were so many people filling our house, yard, garage, and driveway mommy's not sure she even got to say hi to all of them. It was truly amazing to be surrounded by so much love for one little boy. You played on the floor with your friend Ava and cousin Leo. I think you especially liked sitting in your chair while everyone sang "Happy Birthday" to you. In fact I believe that is currently your favorite song.
You took a quick power nap on mommy's lap while a lot of your friends took swings at the super cool lion pinata and decorating the driveway with chalk pictures. When you woke up it was time for a photo session. It reminded mommy of people waiting in line to get pictures with Santa. While you sat on a chair person after person sat with you or held you to get a photo snapped. You LOVED it. With each person you were interested to look around and check out their face. I am certain you had never been held by so many different people in one day. I don't think we have a ton of pictures with you looking at the camera because you were much too busy checking out your friends and family.
Then your crazy mommy decided you needed to experience the bounce house for yourself. At first you just sat on mommy's lap while we bounced and you seemed ok with that. Next we laid you on your back and bounced you gently. You were pretty happy with that. Then we started bouncing you a little more aggressively and you were even happier. Finally mommy just went crazy and bounced you around like fish flopping out of water. You couldn't stop smiling. It was hilarious (although I think we were making Grandpa pretty nervous). It made mommy and daddy's heart smile to see you enjoying yourself so much. Here is a video of you in action. For those of your fans that worry if you had shaken baby syndrome the answer is no.
You spent the rest of the day playing with friends and family some new to you and some familiar faces. Noah is a new friend to you but you instantly took to him. He was great helping you play with your toys and even doing sign language with you. As the afternoon went on some of your friends had to leave but some were able to stay around. You had some special help from your friends Leah and Ava opening the mountain of gifts you received. The amount of clothes and toys you were given was actually a bit ridiculous. So far you have almost worn ALL of the clothes you were given and bit by bit we are introducing your new toys. Each week when mommy brings out a new toy or two you get so excited. It's kind of like your birthday celebration is still going. I think at this pace your new toy unveiling will last almost to Christmas.
Although the gifts were amazing and we couldn't be more thankful for everyone's generosity the true gift of the day was that you were surrounded by so many people that love you. Mommy and daddy wished we could have flown, drove and arranged for each and every person that has been praying for you to be there but we know that's not realistic. We were amazed how many friends and family and even one of your doctors were able to come from ALL over to be a part of your special day. We can't say thank enough to each and every person that took time out of their busy lives to be with us. In addition to that we'd like to thank all of those people who maybe couldn't be at your party but were thinking and praying for you not just on your birthday but on so many days during the past year.
As the night came to an end you feel asleep in the middle of the floor. I think all the partying flat wore you out. What a perfect day for a special boy. When mommy put you into your bed that night she gave you an extra kiss and could hardly imagine that her baby boy was a year old. What an amazing miracle you are Connor.
Happy 1st Birthday Connor. Mommy and daddy love you.
Love,
Mommy
