What a week this has been! Oh, and it's only Wednesday!
On Monday, Wyatt had PT, OT and Speech Therapy at 8am. During therapy, he seemed to be sleepy and just not feeling well. The older that Wyatt gets, the more defiant he gets. Mike blames me, but, ok, so maybe that is from me. Anyway, he wasn't very cooperative at all during therapy. The worst part was that we had an appointment with the Vandy geneticist at 11:30.
On our way to Vandy, Wyatt slept. Our drive to Vandy is only 20 minutes, typically. I knew we were going to be early, so I just took my time. When we arrived, he was still asleep so I tried to to jostle him to wake him. Thank goodness he slept until it was time for weight and measurements. This nap was much needed! (We also saw his PCP on Tuesday who said we have another double ear infection.)
For those of you who have noticed, we have seen a geneticist in the past. The one we saw was part of Centennial, the hospital where he was born. This geneticist, is part of Vandy. I felt it was better to centralize all of his doctors to Vandy. It's much easier for his care. Their computers are all linked and they have access to everything, making it much easier to look up information they may need. This appointment was made more than 6 months ago, but I was able to get in to see the other quicker, so I kept it. I know, crazy mother!
Anyway, this visit was very bittersweet. During the first five minutes of seeing Dr. Phillips, he diagnosed Wyatt with Moebius Syndrome. Now, if you have followed my blog previously, you know that from the time he was three months old, I have questioned Moebius. I had researched it for quite a while and felt as though he may have it and I questioned many doctors about the possibility that Wyatt had this syndrome. We even saw another geneticist who assured us that he did not and that all of the issues I had noticed that were similar to Moebius, were simply low muscle tone. Within the first five minutes of meeting Dr. Phillips, and with the first six questions he asked me, he had diagnosed Wyatt with Moebius.
While this diagnosis is disheartening, it is also a sort of relief for me. It's strange, I know, but I feel like the weight of the world has been taken off of my shoulders. I am not sure why this is, but I really feel relief. I have known all along that there was something else going on that was yet to be diagnosed. I knew my child had Moebius. I hate that I wasn't listened to.
Of course I go back to questioning myself. The geneticist, Dr. Phillips, explained how Moebius Syndrome is "marked" in Wyatt's DNA. I know that there was nothing that I did, or could have done to prevent it, but I still question things. Then I ask why us? I question why Wyatt. I just want answers. But, I know that I will never get answers to these questions.
However, with this diagnosis, I also question the future for Wyatt. Knowing and seeing other children with this syndrome, I ache for Wyatt's future. He will face so many more mountains than other children. Even if he had just been diagnosed with Poland Syndrome and lived with that, he would have mountains to climb that most others wouldn't have. But now that we have an added diagnosis, we have added mountains. Wyatt will not be able to move his face. The tiny movements we get now, that I associate with a smile, are all I will get. Wyatt will be unable to move his eyes laterally (left to right). "Moebius Syndrome is a rare neurological disorder that affects the 6th and 7th caranial nerve, leaving those with the condition unable to move their faces and unable to move their eyes laterally." - www.moebiussyndrome.com With that being said, my son will never be able to show emotion through his face. He will not be able to frown or smile normally. He will not be able to look left or right without turning his head to do so. He will have problems swallowing and eating and may possibly have speech issues. He could someday have vision, hearing and dental issues. This is all so much for a mother to digest.
I have thought about so very much in Wyatt's future since before his birth. I went from thinking that he would die at birth to being thankful that he was alive and thriving. To thinking he was dead in my arms, to being thankful that he was crying during an attempt to get an IV. Then we are faced with knowing that without a surgery to "tact" his aorta to his sternum that he could die, to being thankful that he made it through. Followed by the fact that my child had to be intubated and not knowing if he would make it, then to another surgery followed by a trach and vent to keep my baby alive. And just when I thought it was all downhill from here, we are hit with this. When I once thought about being worried if he wanted to play sports and get hurt, I now worry about protecting him from the cruelty of those around him. Not just children, but adults. How do you explain to someone staring at your child that he is unable to smile? How do you tell someone that he can't blink? How do you stop people from staring at your child, possibly causing that child to be self conscious? How do you teach your child to love ones self when society is there telling them that they are not good enough because of the way they were born? There are people every day that we tell aren't good enough for one reason or another. The song "Born This Way" by Lady Gaga is running through my mind. I want my baby to know that he is perfectly perfect, just the way he is. But, how do I help ease the pain and rejection from others? I know this personally because of my weight, but I don't want him to know this pain. If you take nothing else from this blog, please teach your children acceptance. Please, teach them that just because someone is different from you doesn't mean that they are bad. It doesn't mean that they are scary or mean or dirty or ugly. They are just like everyone else, God just made them out of different materials.
With that being said, I have found www.moebiussyndrome.com to be an incredible resource for me. I have found mothers and fathers who have grown children with Moebius and are will to tell their experiences. Also on this website, I found that the Foundation has a conference every two years. In 2010 this conference will be in Philadelphia. Mike and I are determined to learn absolutely everything we can about this diagnosis so that we can provide an environment for Wyatt that he is able to thrive in. So, as of right now, our plan is to travel, with Wyatt (granted we are off of the vent) to Philly next year to learn more about his syndrome. We will also be able to attend seminars from people who have children with Moebius and from adults with Moebius. We will be able to connect with others and share the information about our children, in hopes of helping each other. It's a support group that friends and family just can't provide. It's a group of people who are able to share their journeys in parenthood with children with Moebius.
Pray for us as we live in this new diagnosis. It feels as though the wind has been knocked from our sails. I know that we will sail again, but for now, I grieve. I don't know what I grieve for. What have I lost? My baby is here, and amazing! He laughs when I blow raspberries on his belly. He is into everything! He is so curious it amazes me. He is so stubborn that I have to laugh! I can't explain my emotions at this moment. It's so difficult. Just pray that I somehow gather the strength to walk though this with power and conviction. And pray that 40 years from now President Wyatt Paul Carcione does a great job running this country! Because I know there are great and mighty things ahead from him!