How are you already ten years old… double digits?! For some reason, this birthday is hitting me in a different way than past birthdays. I think maybe it’s because you are now entering into double digits and in a way, you are “entering the club” that most of us are in. Your “little girl” days are gone and now you are transitioning into the “tween” phase, and with that comes new territory. You will have new thoughts, feelings, emotions, exposure… all of it and more.
I look at your past ten years, and there are so many things that you’ve done, experienced, and accomplished… and I’m so beyond proud of you.
Starting from your younger years to current, you’ve shown us how a pretty cool dancer you have become… along with being an amazing baseball player, cheerleader and swimmer!
You’ve shown us how you are a great friend to others, you are caring and thoughtful, and you make others instantly smile and feel good just by being around them. You’ve been the absolutely best sister anyone could ask for; you have taught your brothers more about life than I understood when I was their age. You go to their sports games to support them, and I know that can be a lot sometimes, but they see this and appreciate having their little sister in the stands, cheering them on.
You have shown your medical team – doctors, nurses, etc. how brave and strong of a girl you are and how you still continue to smile, sometimes even during the toughest times.
You have shown your therapists how hard you work and continue to work… every week at therapy, and everyday in-between. You have gone on some really fun family vacations to West Palm Beach in Florida, Disney World, Myrtle Beach, Mohican, University of Notre Dame and countless trips to Catawba Island to name a few.
You’ve gone on numerous “girl trips” with me to Pennsylvania to meet up with your Rett sisters. You’ve been snow tubing a couple times and you love going fast down the hills. You loved the roller coasters at Disney and other rides at various amusement parks. In general, you have shown us that you prefer to get a little crazy with these things and you aren’t afraid. You’ve been go-cart riding many times, and you love to go putt-putting, especially when ice cream follows a good round. You’ve participated in many father-daughter dances that are filled with some of your happiest memories and moments.
You’ve also enjoyed many dance parties throughout the years at the Barons Rink with your friends, thanks to a great family who graciously heads this up! You’ve taken an airplane ride to the North Pole and experienced many other magical moments like this, due to the goodness of others and their time, coupled with their generosity. There are so many amazing people we have come in contact with that we may have never met if Rett wasn’t part of our lives. We have met amazing families and people who have dedicated a lot of themselves to help make your everyday life at home easier and happier. We have a lot to be thankful for Claire, and I know you know this. It’s really, real cool to look back and reflect on all of this, you know?!
I want to share with you, some of my favorite things about you. I love how you like to do things for others. You enjoy writing letters and sending them in the mail to cheer someone up; you enjoy making stationary and other gifts. You feel proud after you complete chores around the house, or help me cook. I know how much you enjoy making others happy because I can see your eyes light up either during the moment, or when we talk about it.
You’ve learned how important it is to help others. You’ve participated in many “Claire’s Crusade” events over the years and we thank you for being the one on the front lines, so to speak, to share your experiences so others better understand Rett Syndrome. You doing this helps in so many ways, Claire. Providing awareness sometimes leads to raising funds. Those funds over the years ($225K+) have gone to helping Rett doctors, scientists, other Rett organizations, Rett families, and one that especially is important to me – education and communication. Your impact to this world over your ten years thus far has been tremendous. You’ve inspired others to want to be better people, or fight harder; to be more inclusive and kinder, or to have a better perspective over certain things and to not give up even if you want to. You’ve done all of this… just by being you.
You tell us what you like and what you don’t like. As you get older, you get more opinionated and we absolutely LOVE this. We have so many funny memories that have come up during dinner meals and conversations. What you say to your brothers, or to us (or about us) sometimes is absolutely hilarious. We’ve been on a long road with implementing your eye gaze communication device and we still have a lot of work to do. Our end goal is to make it so you can use it as independently as possible. We want you to be able to share each and every thought that you have within yourself to others. I know this isn’t easy for you. And I know there are so many times we aren’t reading you well or we misinterpret your message and you feel misunderstood. We are sorry about this and we promise to continue to try and get better at using your machine so it’s a little easier for you.
In sharing your opinions, you have learned that it’s totally okay not to say that everything “is good” all of the time. You tell us when you don’t like how a certain person made you feel or if you don’t care for them or about a situation in general. We are so proud of you for speaking up or answering hard questions we ask, especially if it’s difficult for you because you don’t know how we will react, especially if it makes us sad or angry. Claire, continue to do this ALWAYS, please! We are so proud of you for getting to this point where you feel comfortable doing this. It’s SO important to speak up and continue to share ALL things on your mind, whether good, bad or ugly. Your dad, brothers and I want to know it all so we can best help you, however and whatever that means. We love you and want you to be as happy as possible and feeling as safe as possible, especially during the times we physically can’t be with you.
Claire, you are a very beautiful girl. Your eyes are bright blue and they really do sparkle often and tell us so much about how you are feeling and what you are thinking. Your smile takes our breath away and it is so contagious. Your hair is naturally curly, and it sums you up in many ways – people remember you often because of your hair. I remember the day you were born, (10 years ago today, this morning!) and the nurses at the hospital were telling me how you looked like a porcelain doll. After all these years, your skin tone and complexion are the same and you still definitely have an angelic look to you.
The thing is – your beauty, Claire … it comes from within too and this is what is really important in life. You are extremely kind and generous, and your heart is golden and pure. When you only have a few M&Ms in front of you for example, and someone asks you if they can have one, you say “yes.” (Even though I know you want to say “beat it!”) Now, what’s also awesome about you is when you are feeling extra feisty (and we all know when this is!), if we ask you for that M&M, we immediately see the extra sparkle in your eye and smirk before you say “no.” Then you start laughing… this is the absolute best. We will sometimes ask you again, and unless we are really in the doghouse for some reason, you always say “yes.”
And how about this past Christmas when we made cookies… we made an angel cookie in particular and you loved it.
You kept tapping it and smiling. You loved the taste and kept enjoying every bite. But then all of a sudden you stopped opening your mouth as I was feeding you. It took me a while to understand why, but after a series of yes and no questions, you told me. The last part left of the cookie was the angel’s head and you didn’t want to eat that part. It was almost like you thought it wouldn’t be nice to eat the head. I only thought to ask this question because when I was your age, I used to think the same things and when I told your dad this, he laughed at me. But it was true! So when I asked you if you didn’t want to eat the rest of the cookie because all that was left was the angel’s head, (and you didn’t want to eat her head), you said yes. The look on your face when I finally figured out what you were thinking, and why you weren’t eating the rest of the cookie, was one I’ll never forget. This was seriously so sweet. And then I saw the look on your face when you finally felt understood… which leads me to another topic.
Sweetheart, you’ve done some pretty HUGE things that some people said you were never capable of doing. You should be SO SO proud of yourself because you worked hard for this, and this (your education) is something that cannot be taken away from you. You’ve proven that you CAN spell, read and write. The fact that you are nonverbal and do not have control over your hands (which results in limited purposeful hand use – making things even harder) is a tough combo to work through – however, this has not limited or stopped you.
When you were little, we were told that Rett girls were greatly underestimated and misunderstood with regards to their cognition. We were told it would be possible for you to be literate and ever since I heard this, it literally became my mission to get you there. Since you were little, my biggest goal for you was for you to learn to read and write. Over the years, this has not changed. I wanted this for you because I felt it would help unlock your world a little more. I felt this could also help you feel more understood by others. People called me crazy because I wanted this for you. They laughed at me, talked about me, and were downright cruel in many different ways. It doesn’t matter what others think though, especially when their thoughts are negative, and I’ve learned not to care or have those opinions stop my dream for you. I knew in my heart you could do this, and here you are, Claire – you are doing it! All along when I told you that you were capable of learning to do all these things because you were smart, your face would always light up. Even if it were not my goal or dream for you to learn these skills, seeing your face light up because the thought of learning these skills made you excited… THIS was all of the reason to keep going in order to make it happen for you.
We are beyond grateful to Rett University for all of the ways they’ve helped you over the years, but especially this past year. We’ve witnessed and experienced that when all of the right factors are in alignment, you CAN and will be able to learn and do so, so much. We’ve seen what you’ve done in a short amount of time Claire, thanks to Rett U, and it’s so exciting… this is just the beginning, babe!
We are also so extremely thankful to your nurse who has been there every step of the way this past year + as you’ve transitioned into this new chapter of your life. Without her consistent help and genuine love and care for you, things would have been more difficult. She has helped you see what we all see – and that is your incredible worth. She reminds you to hold your head high and be proud of all of the things you are doing. She wants to see you continue to grow and she loves you like you are her own daughter, plus her good friend.
It may have taken 6+ years too long and a lot of advocating to get to the place we are finally at now – but that doesn’t matter. What matters now is that we are seeing first hand how much you’ve changed once you were expected to learn more and once you were given the right tools to do so. You are so much happier… you are more opinionated… you have a lot more life to you. And you are SO much more confident, which you should be!
Seeing this academic transformation in you brings your dad and I to happy tears… we can’t even tell you… Your brothers have seen a change in you and I see the excitement when they tell us what new things they are noticing about you. Others who don’t see you as often, have told me that they’ve seen a change in you too. This is incredible – all of it – and we are thankful for the shift that brought this change about, along with all of the people, places and parts that are the reasons things are working well.
Unfortunately, as you know, there are a lot of injustices that you will face in your life. You may automatically be thought of as someone who “isn’t capable” just because. You’ve already experienced this in different ways over the years, and I wish I could take those memories and experiences away from you. It’s a hard lesson to teach you that this type of mentality exists with some people… and it’s heartbreaking as your mom, to watch you go through some of the things you did and sometimes continue to do. It angers me when I see this occur because I can’t imagine how this makes you feel. However, please listen to me… your disability does NOT define who you are and your dad and I will do everything we can to make sure you have the appropriate experiences, education, and more – throughout your entire lifetime, so you can reach your full potential. Dad and I will limit these types of negative experiences for you in every way possible. It won’t always be easy, however you know that we will do whatever we need to do, to make sure you are in the right place in order to grow and be the best version of you that you can be.
Additionally, the other thing you know by now, is that your dad and I will fight for you. Your brothers will fight for you. Your grandparents and great grandparents have and will fight for you. Your aunts and uncles will fight for you. Your great aunts and uncles… your cousins… your godparents… our community of friends, etc… WILL FIGHT FOR YOU! The list goes on, babe. You have an army behind you – and we all believe in you, love you, and will do everything in our power to make sure that you reside in a place, in a world – that despite discriminatory injustices, you will be okay… and not only be okay, but you will be safe and truly happy!!
SO much is ahead of you Claire… and as long as you are in the right environment, using the right tools and resources, surrounded by the right team and people, there isn’t anything you can’t do. The key is to surround you by those who are positive, patient and encouraging… and to surround you by others who truly and genuinely believe in you and care about you!
You’ve gone through a lot in your short ten years so far Claire, emotionally, and physically. When you went through your regression period, you would literally scream for hours. I know this was so confusing and frustrating, and I wish I could have prevented it from happening. I am hoping because you were so little, you forgot most of this… hopefully all. Over these ten years, you’ve been in the hospital more times than I can count; you’ve had numerous ambulance rides that I know were scary. I know the years and days aren’t easy for you. I know you may feel very sad and lonely at times. And I know your body is uncomfortable and hurts at times as well.
As hard as it is on certain days especially – I pray that you are comforted by knowing that God handpicked YOU to come into this world for a very important reason. God loves you so much Claire! And Jesus is your pal! God made you perfectly the way He wanted and the way He intended – He knew you and what he wanted from you and for your life, before you were even born. And you have a very important and intense purpose in your life… this I know for a fact. I had a feeling about you before you were born… in fact, it came to me before Brendan was born. Claire, you are an amazing girl and you’ve already helped a lot of people throughout your life so far. I know you will continue to help many, many more.
I know that there are times where you wish things could be different and you didn’t have to walk your particular walk in life. Knowing how much you understand everything is sometimes the hardest part. I wish I could take away your sad thoughts when they come, and all your struggles and make things different and easier for you. I pray that during these days, the harder days especially where maybe you question things or you are mad or sad or angry, etc. I pray that God gives you the extra comfort, grace and strength that you need to get through it.
As you turn ten, it is my promise to you, to continue to try and bring you as much happiness as possible. I’m not always fun and it won’t always be fun. Yes, this means I’ll continue to push you. This may get annoying… I know at times it already is. However, doing your therapy is important and making sure we do certain IEP related topics at home is important too. These are the basics.
I’ll continue to try and come up with fun family activities we can all do together. My wheels are spinning with regards to a few ideas I have lined up, and I’m excited to try them out soon!
I promise to also try and create more opportunities for you to build friendships. It’s hard because I don’t know much about the kids you go to school with. I know it’s hard for you to tell me about everyone and there’s a lot of information I wish I had about them and you, and what you all do together. Having friends is important, and I want to give you more chances to interact with other girls and boys your age, not only inside of school but outside as well.
Today on your 10th birthday, Dad and I want you to know how much we love you… how much God loves you… and how much other people love you. You are truly special to all of us. As I look back on your past ten years, I am grateful for everything we’ve crossed and experienced because all of it has brought us here, together, to this point. Please continue to shine by just being you, because you are pretty darn cool, Claire! You are a smart, strong, beautiful, kind, thoughtful, funny, (I can go on and on as you’ve seen with the length of this letter, lol!) brave girl who doesn’t give up. You have such a naturally positive attitude and you continue to be so patient with others.
My wish for you today, and always, is that your dreams – whatever they may be – will come true! Happy Double Digits, Claire Marie… we all love you so very much!