October is Rett Syndrome Awareness Month
October. It comes every year with it's pumpkin-spiced everything, snazzy boots, scarves, and piping hot apple cider. And every year, I personally have reason to celebrate since October is, after all, my birthday month! (Turning 41 years young this year! HEEEYYY!!!) But it's also a month to commemorate various causes. Most know that October is Breast Cancer Awareness Month. Many others know that it's also Down Syndrome Awareness Month. But many do not know that Rett Syndrome Awareness Month is additionally in October. For those of you who do not know my family well or haven't yet read This Special Life, Rett Syndrome is the neurological disorder which my 13-year-old daughter, Kaiya, was diagnosed with at the age of three. For that reason, this time for commemoration hits very close to home for me.
We live with Rett Syndrome every day. We are very aware of it. There is no need for us to be reminded of everything that comes with this diagnosis. Having said that, because RS is deemed as an extremely rare disorder, I realize that there are tons of people out there who do not have a clue about this disease. They don't have a clue that it is a random, genetic mutation which is almost exclusively only seen in girls. They don't know that it's the most debilitating of cases on the autistic spectrum. The fact that it exists in children on every continent and does not exclude any particular race or nationality is unbeknownst to most people in general.
(Side note: To get an idea of just how rare Rett Syndrome is, 1 in every 10,000-15,000 babies are born with RS per year. 1 in every 700 babies are born with Down Syndrome yearly.)
So there! Now you have been a tad more educated about what it is. However, this doesn't give you any kind of a window into what it's like to live with this disease on a daily basis. Any and every bodily function of the brain, (that's a lot of major functions, by the way), can virtually be adversely affected. This means, our daughter's life is glaringly different from most other children's lives. My husband's life is different from the lives of most other fathers he knows. My sons' lives are in many ways nothing like that of their friends and peers. Lastly, my life as her mother and main caregiver looks NOTHING at all like I imagined parenthood would be like. I mean, come on. I change the diaper of a human being who almost weighs as much as me and has boobs. (REAL TALK!)
Can I continue to be real with you though? I have a genuine love/hate relationship with Rett Syndrome Awareness Month. I am all for the effort to educate others. Since the major push to produce a possible cure began back in 2007, the fundraising opportunities are endless towards research and clinical trials. The more people know, the more finances come in for a cure to become a reality. I understand that without money, there's not much hope for a cure so the need to spread the word is significant. But every October 1, I think I start to twitch a bit when the endless posts start showing up on my FB newsfeed from other moms within the Rett Syndrome community begin posting about all the struggles and issues their girls have because of Rett Syndrome. It's enough to turn a bright day to gloom. I realize they are just trying to give people an accurate idea and view of what life is like for their precious child and I do not fault them for it. They are expressing themselves the best way they can to educate the masses about this wretched thing that they feel stole so much from their baby girl (or in super rare cases, baby boy).
Where I personally struggle, is the conflict between wanting to educate others without also bashing the beautiful life I feel I have been ultimately blessed and honored to live as Kaiya's mom. Yes, I want people to better understand who Kaiya is. But not to the point that it casts a dim light on the awesome purpose God has for her. I want people to understand that though she cannot talk, she very much has the ability to understand you when you speak to her, (So please do speak to her!) and will respond to you in the only ways she is able to in that moment. But, I do not want people to feel in any way that she is a burden or that I'm missing out on having what a parent of any "normal" child may experience. If you have read, This Special Life: Living Life with Special Needs & LOVING it, you'd know that I genuinely feel I hit the jackpot getting to be the mother of this amazing young lady. I don't feel victimized by Rett Syndrome. Likewise, I believe that since we, her family, no longer harbor anger or bitterness over this diagnosis in our hearts and minds, she also feels more accepted, loved and takes on every challenge which comes her way like a rockstar.
I am not in denial. We have seen this girl deal with seizures, surgeries, and more medical issues over the years which I do not have the time to list here. Yet, through every difficult moment, day, season, and year, we have literally seen the miraculous hand of God in her life and such a tangible presence of grace and peace which has changed our mindsets about Rett Syndrome; about "This Special Life". It's not this living and breathing enemy which we feel we have to fight daily. It's a thing we live with but it hasn't earned this grand place in our lives that causes us fear or pain. We don't give it the power to dictate the kind of lives we're created to live! We don't treat it like this thief that came in the night and stole everything precious to us!
This attitude of victory in the midst of Rett Syndrome was not conjured up overnight. I didn't drink a little bottle of positive potion that magically made my perspective this bright, warm and fuzzy. Here is where I remind you that my daughter will be 14 next month! I have cried, screamed and toiled with plenty of negative thinking, fear, and grief. Thankfully, as we have become more aware of God's supernatural grace to give us the strength and ability to take each day and trial as it comes, we've been completely transformed by His glorious character displayed through the life of this little girl. I know beyond a shadow of a doubt that without something like Rett Syndrome coming into our lives, we'd not have the intimate knowledge of God which we possess today. I was desperate to be able to make sense of why my little girl had to be born this way. I searched and searched for answers and prayed and prayed for wisdom to somehow be able to understand it. I clung very closely to Proverbs 3:5 which says,
Trust in the Lord, with all your heart and lean NOT ON YOUR OWN UNDERSTANDING.
This bit of gold here told me that my own futile mind may NEVER COMPREHEND why our little girl was born this way. Then after several times of reading the story of the blind man in John 9:3, a light bulb moment occurred in verses 2-3."
And His disciples asked Him, "Rabbi, who sinned, this man or his parents, that he would be born blind?" And Jesus answered, "It was neither that this man sinned, nor his parents; but it was that so the works of God might be displayed in him.
(GASP!) What if God could actually be glorified in the life of my precious daughter? That was a thought that literally made me feel like the biggest ton of bricks had been lifted from my chest. That was a thought that allowed me to breathe noticeably easier. That was a thought that gave me unspeakable joy. Slowly, but surely, my prayers transitioned from prayers that would make our lives more convenient, to prayers which gave God rule and reign to completely show off in our lives, even in the life of this little girl who just happens to not be able to do hardly a dang thing for herself. This epiphany gradually removed the light from my own selfish desires of what I thought I wanted to experience or what I thought she was "supposed" to experience, to the desire to honor God with our lives in whatever way we could...wheelchairs and g-tubes and all.
This is how Rett Syndrome has become just "a thing" and not something we highlight very often. We've just gotten to a place where no matter what happens, we know that God will be glorified in her life. NO MATTER WHAT. Rett Syndrome does not have the power to destroy the works which He has already performed in and through her life, nor the ones to come.
I realize that the complexities and severities of RS have caused many children to actually die what seems like too early a death. I do not know what it feels like to lose a child and cannot speak to that kind of grief. We have had some very close calls with Kaiya and the thought of her not being here does greatly grieve my soul and bring sorrow to my heart. I know there are many heart-broken parents out there. I do not belittle your pain or the reality of what RS has meant for you. This is my personal experience and I only share it in hopes that a new perspective may inspire, give joy, and produce peace to another parent in my shoes. I would hope, however, that even in death, my sweet girl's life would still be a light and tribute to the One who created her and ministered so greatly through her presence here on this earth.
A cure which may increase the quality of life of every child/adult in the world living with Rett Syndrome would be an answer to thousands of prayers around the globe. It is indeed a worthy cause to research and find out what we can about this disease and raise awareness to the public. It is for that reason, that for the next couple of weeks, I am donating a portion of the proceeds from the sales of This Special Life to two different organizations that offer help and hope to families living with Rett Syndrome, Rett Syndrome Research Trust and RettSyndrome.Org. Please take some time to check out these organizations online and consider making a donation of your own if you feel led to be a part of this effort.
I want to make very clear that my perspective and experience may differ from that of many other parents of RS. However, I acknowledge the significant need to get the word out about Rett Syndrome. I have participated in plenty of fundraisers and I LOVE my other Rett Syndrome mama friends whom I have had the pleasure of spending time with. There is something very special about the people who know exactly what you're going through on a daily basis. I can talk to them in a way which may make others squirm. (Lots of poop talk and shared surgical procedure experiences mostly!) Many times we come through for one another in a pinch when we've run out of diapers or feeding supplies because the silly supply company took too long to ship or due to the busy lives we lead, we forgot to call and reorder! These women are irreplaceable in my life. You know who you are, and I love you more than words can say.
My very personal desire is that we can continue to spread the word about Rett Syndrome with grace and gratitude; that our posts have less of a tone which may cause some to feel sorry for us. Instead, that people would honor us with respect for the role these amazing children play in our lives and in this world, inspiring them to learn more and possibly donate towards research efforts. There is hope for a cure and any help to quicken the process is greatly appreciated. At the end of the day though, my prayer still remains what it's been for the last several years of Kaiya's life: "God, give Kaiya the ability to do everything You created her to do; nothing more; nothing less. And in all things, may Your name be glorified. Amen".