And now the Rett community is left with questions?
I guess that’s the only one. Why? WHY?
And now the Rett community is left with questions?
I guess that’s the only one. Why? WHY?
Let’s just put it in the simplest of terms…Rett syndrome sucks. It sucks bad. And, a lot of the posts I’ll do this month will be about how bad it sucks. But, today, because there is so MUCH horribleness in the world this week. I’m going to tell you about when it doesn’t. And the thing is, some people will read this and go boy that really sucks! Meanwhile, I’ll be laughing my head off, because, you may not know this, but Rett syndrome parents and loved ones have a damn weird sense of humor. We need it.
First know, We will do ANYTHING to make our kids laugh. We will make fake fart noises, we talk to their favorite stuffed animals/toys. We try ventriloquism, badly, with Barney, or whatever. One of Katelin’s favorite things was hearing her brother get in trouble when he would flick the light switch on and off when she was in the bath, so even if he wasn’t there, I’d flick the light switch and yell and him…Sean, you are so ANNOYING!! Hysterics every time. So, basically, we get to act like complete idiots and stay very connected to the kid in us.
Katelin loves when things break by accident or fall. I have a video on my phone of her sister, when it plays I will “accidently” drop the phone and say “Oh, NO! Katie I dropped Debbie! Is she ok??” Giggles galore. She thinks it’s funny as hell when I blow bubbles in her chocolate milk and they come up through the lid of her cup. I will do that anywhere.
And that’s just me, Katie is in a class of her own (which she probably actually shares with her sisters and brothers in arms). Like the time she stole nachos off some strangers plate at the fireworks when she was about four. I laughed so hard tears came out of my eyes.
And then there was the phase she went through were she had a thing for shoelaces. Like…I mean a real thing. She’d crawl over to strangers feet and start chewing on their shoelaces. I remember one well dressed man reading a newspaper, I went to go get her and he said…leave her if it makes her happy. So, you see it isn’t all bad, sometimes you meet people with the hugest hearts.
Oh, and the stories we tell each other no one else will understand that send us parents into fits of laughter, choking and crying that would send other parents running from us…these usually involve poop in some way.
Don’t feel sorry for us or pity us. Oh, sure, we appreciate very much when someone reaches out to us. I’ve had people just come up and hug me in public when it’s one of the times that it really sucks. Strangers have given me tissues, helped me with my groceries and one time in particular I’ll never forget….
I flew to California to attend my step-daughter’s college graduation-36 hours total…I get a call on the way back, from my oldest, Katie was in a rage. So there I was for an hour singing to her on the phone, every Barney song I knew over and over, and trying to arrange for her regular aide to get there, occasionally asking things like “did the dvd player break? She pushed the TV over? Did she break the window? Is she hurt?” And somewhere in there it was time to board. And then, a miracle…without a single request on my part during the entire time of what happened next….the stewardess comes to me and whispers…you can board last. I nod. Time passes, it’s time to board. The steward comes and grabs my bags, they lead me to my seat, passengers put away all my luggage (I’m still singing), the stewardess comes and says… the captain says you can stay on the phone while we taxi out…I nod, tears now…my battery is dying…and just like in the movies, right before my battery dies her regular aide gets to the house and the plane is beginning to take off. I hang up. And hands from across the aisle, the seats near me, reach out to hold me. And no one ever said a word, they just KNEW.
So, yes Rett syndrome sucks, but then there are many times words aren’t needed, even in the “real world.” And there are many, many times because of Rett syndrome you see true beauty in the world so many others will never get to see.
This post, from three years ago, really struck a chord in people. It was the highest viewed post ever. And, the most shared. Rett syndrome Awareness is not just about Rett syndrome, it’s about the families who love them….
One of the overlooked impacts of Rett Syndrome is that on siblings. In some ways, it’s a good impact. Our other children are usually empathetic to disabled in public, stick up for their sisters and brothers in front of others. Debbie once told me she can tell her “sister secrets” to Katelin because she KNEW that she would never tell anyone. But it’s a two sided coin. They also suffer.
They suffer the loss of a sibling that they were counting on to be their friend, teammate on the neighborhood basketball team or baseball team. They lost their tea party planner and guest and Barbie pretend player. They won’t ever share clothes or talk about boys and giggle.
They have to do things “normal” children would never even think about-help restrain their sister or brother when they are out of control, watch and give the heads up if a seizure starts, run for enemas and diapers and wipes for their grown sibling. They lose sleep when it’s a screaming night, their grades suffer, their social life suffers, they are also the silent victims of Rett Syndrome.
These children, that need their moms and dads, don’t get them. The child with Rett syndrome takes precedence every time. Can you imagine your 16 year old just had her heart broke and needs you, but Rett syndrome says “too bad” and your other child needs feeding, diaper changing, is throwing a fit? Who can she cry to, then?? For some, you only get to one baseball game or soccer game and it’s not the one your other kid scores in? What a loss for both of you. Others, it’s countless days at the hospital, and barely seeing their other children. Oh, and the holidays, also known as our least favorite days of all. How terribly sad is that. Christmas isn’t something to look forward to, it’s a day to dread- When there’s no where to go, routines are totally interrupted and presents are taken as soon as possible into other rooms, and life returns to the same old doldrums routine; not to mention summer vacation is something to be survived if at all possible.
The siblings, oh, they struggle. How stuck are they?? They love their sister/brother, of course, but how can they separate Rett syndrome from it’s personification in their sister or brother? What does it matter when they can’t go to the zoo, or their mom can’t go to sporting events, or school functions or when people ask “what is the matter with your sister? Why is she drooling?” Their life is so full of loss it’s heartbreaking. I wish I could take back all those sleepless nights. The days they stayed home from school just so they could sleep, the failing grades during difficult times, when every night was like a battle.
I grieve for my other children as much as I grieve for Katelin, and I can only hope that they realize later, that we did the best we could as a family, that there were some pretty spectacular times, some special moments, that didn’t include their sister, but that there were some pretty spectacular ones that did.
There are of course times when none of this is true, when everything is going ok. When laughter abounds and sometimes “good” goes on for a long time; But the threat of the opposite is always there.
That is Rett syndrome, constantly peering out of the shadows waiting to strike, and I have as often yelled at it to leave my other children alone as I have Katelin. And when effective treatment/cure comes, it will be for my other children as well. How grand it will be for them to meet the sister that was taken so many years ago.
For many parents, I’d almost dare to say all, Life can be categorized as “Life before Rett syndrome” and “Life after Rett syndrome”. My daughter, Katie, is 24 now. For 22.5 years I have loved the child in the “Life after Rett syndrome” and grieved the child gone from “Life before Rett syndrome.”
Before Rett syndrome, my girl was so happy; I can still see her bouncing her little diapered bum when she threw something in the trash can, such a big, little helper. I remember her crawling on the floor, picking up my keys and going to the door and trying to unlock it-she wasn’t even 6 months old. Oh, how SMART she was. So full of giggles and laughter. She had a ring of plastic beads and I’d say “Pretty Princess” and she would put it on her head like a crown. And, when I’d say “What does a dinosaur say?”…she’d roar the cutest little roar ever. Even remembering it now, all these years later, the tears are streaming down my face. My sweet, baby girl, stolen from me by Rett syndrome.
And how can you explain to someone when you are crying for your child that is still right beside you, that your pain is so great. It’s not just that your child was taken, it’s that you feel like your child is trying to reach you, to find YOU, to be back, too. And neither of you can make it happen. It’s a knife in the heart.
Life before Rett syndrome held dreams that were not only possible but probable. You held your sweet, perfect baby and saw sports teams and trophies, a first kiss, first love, the prom, a wedding, a baby for them. You saw pictures on your refrigerator, snuggles in bed and tickle fights, you saw a time when Barney and Sesame Street would one day move the heck on out of your house. You saw an end to diapers and mounds of laundry, and all those planned endings would just be the start of new beginnings. And the thief that stole your child, stole all that away, too.
And there you are-left to cradle a living child and grieving for all that was now dead to you. Grief gets easier to bear, except when you see children on a playground climbing up a slide and your child can no longer walk; it’s easier to bear until you are holding your daughter or son in bed cuddling…after a seizure; it’s easier to bear until prom comes along and no handsome young man is going to ask your girl to her first dance or your son is not pulling at his necktie nervous as all hell as he knocks on his date’s door; it’s easier to bear until your younger children surpass their older sibling and help feed them, run for diapers, wipe drool from their mouth, have to defend them at school. It’s easier, until so many times it isn’t.
And those were just MY dreams. What about Katie’s dreams? I grieve for them as well. What would she have been? My girl loves space, so I imagine she would’ve been a scientist. All these could’ve beens, SHOULD’VE beens. They haunt me at times. Yes, in the Life after Rett syndrome there are amazing times. You learn to appreciate every little thing in life, a breath, a heartbeat, a new first word, laughter, hand use, a step. And you love this child fiercely, your child. This is how I know Love is supreme, because it is strong enough to exist in the conundrum of “the child I had is gone for ever, this is the child I have now and so I will love this child to my dying breath” even while suffering such a great loss.
Who Katie is now, is amazing. She is kind, empathetic, compassionate. She is part leprechaun, I say, because she is a jokester. She doesn’t care what color people are or who they love. Everything about her is pure, every emotion is real. She doesn’t have it in her to lie. She is an incredible human being; she’s brave and daring and has to fight every day to win a battle against Rett syndrome. I like to think that each fight she wins, she’s saying “I’m still here, mom, I’m trying hard to get back to you.” And, yes, in many ways I’m lucky. I have a child who will never leave me. I will always get to experience Life in a wondrous way full of small miracles, because of her. But, whether it makes sense or not, I will still always grieve.
Does it seem I am so ungrateful? That my child is alive and so what is wrong with me? I suppose it does. But, you see I am a mother who has to live with grieving a child gone, while loving the child I have and they’re both the same. I love them both, I just miss one.
October is Rett syndrome Awareness Month. This means of course to make OTHER people aware of Rett syndrome; for us parents, siblings, grandparents, caregivers the whole YEAR is awareness month.
So, how to make people aware? There are so many ways and we each find our own, simple but effective ways.
I am going to use this first post this month to list the ways we, who love these children and adults, have to be aware. Every. Single. Day.
That is how I view Rett syndrome Awareness. Our children need a treatment, a cure. Because the most important thing we are aware of….
Time is not on our side.
So, we are closing in on the third and final pivotal trial of Trofinetide. It is my understanding that Neuren and the FDA are meeting in October. Sometime next year the study will begin recruiting and start. What the criteria are, the end goals are etc. are still not published as far as I know.
But, because there is definitely a lot of buzz about it, parents are beginning to really contemplate-What will Trofinetide mean for my child?!?
I think that’s a very natural question and fear, actually. I believe I know to some extent what it means for Katelin, but at over 5x the dose she received (or didn’t receive) I can only guess. I mean 5x the dose! So, I think- will she do 5x more in the same short time? or does it cap out for older girls somewhere? I had a glimpse and so did Katie. I know she wants a phone and a car, a black one. I think you can guess which she’ll get, lol. But, her articulating to me that she believes she will talk and wants a phone is HUGE. So, is the fact that she wants a car, but even if Trofinetide fixed EVERYTHING she’s only 4.5 ft tall, I don’t think she can reach the pedal, thank goodness. But, parents are wondering other really significant things.
My child never talked-what kind of therapy is going to be needed.
Will it be like starting over with a baby?
My girl is 40 or older, do I give it to her?
There’s so much unknown, there’s so much Hope, and there’s fear.
Fear that it won’t work on a particular mutation; that it won’t work on their child; that it WILL work.
These are all understandable fears. Even I, a true believer in what may be possible, am a bit afraid.
Afraid? you say. You! Oh, yes.
I Am afraid of the unknown-how will Katie’s and my relationship change if she can talk? What if she says she doesn’t want to live at home? She has been my focus for 23 years, controlled to some extent everything I do and when I do it. What if she can’t come to terms with the fact that she’s had to use diapers/pull-ups as an adult and realizes not everyone does that. How will she feel when she gets angry and doesn’t resort to banging her head, only to realize the damage she’s done over the years. How will she feel about herself in this (almost certain) new awareness of herself, her disability, her memories. How will she feel when she looks at the scars on my arms and knows that she put them there? How will she develop a new relationship with her siblings-one not based on disability but equality of language and memory. Will she forgive them for their resentment, will they accept her and forge a new relationship with her. One thing I know for sure is that if Katelin can talk, we are going to a counselor. She will need help to process what is happening to her, to us as a unit, and any possible past trauma she can finally speak about.
But, what I do NOT fear is showing her the world and taking her lead about what she may want to learn, where she may like to go. I’ve been in “Holland” so long, I’m excited about finally maybe going to Italy or Ireland or the next state over without worrying. I look forward to being able to go somewhere alone, knowing that she can tell me everything that happens while I’m gone. No more scared to death of what the untold might hold.
There is always a lot to fear in the unknown. It’s like those first astronauts stepping into a teeny tiny capsule that would take them to the moon and back. Really, that “back” must’ve been in their minds all the while, no matter how much faith they had in the science. How brave they were. How brave WE are, our children and us, to allow ourselves to face such a rare opportunity- to truly dare.
So, as we approach this deadline that we have waited and waited for, bravery is called for. We must be brave enough to face our fears. Maybe that means not giving Trofinetide to a woman who’s 40 or 50 when all their lives their parents have hoped for the day. Maybe it means facing that “empty nest” you never thought you would have. In the end, we don’t know what any of us may be facing. All the trials have been too short really, we just won’t know until we get there. Much like being new parents-you never know what life holds in store for you and your new child, but oh the promise that can be.
Some parents are faced with the awful, horrible truth that truly nothing can be done and they have to make a decision let their child go or keep fighting with an inevitability end even then. Some opt for an option that will save their lives and put even more burden on themselves, and they do it, because, well what else can you do. Those are the heartbreaking choices; when options run out, some place their faith in God, some in if they can hang on a bit longer, than a new option may present itself, some to both.
I am fortunate. I am facing a “what do you do when you have no more options” scenario, but it’s only about behavior/mood/aggression.
Aggression can be a tremendous consequence of Rett syndrome and it can be a lonely state as many parents are afraid to say how aggressive their children can be. Usually, it is the higher functioning girls that are aggressive. Katie wears a helmet almost non-stop inside buildings because she will head bang out of nowhere; she’s been known to put holes in walls with her head and helmet. And without medication, she can become extremely aggressive. My posts are often met with comment after comment of the same, similar pictures, scars, stories-like being in an abusive relationship but you simply cannot get out of it.
The medicinal combinations Katelin is on for mood control has caused her to gain a tremendous amount of weight. So much so, that now the real threat of diabetes is at hand. And so, it had to go. But, because Katelin is allergic to so many classes of medications, I’ve been told several times there is nothing else to try.
I have only one place to turn now and that’s to naturopathic options. They scare me. They’re not regulated, some come with possible side effects that seem fairly dire if you ask me. I reached out to the community and was given many responses, but a few were mentioned several times. So, began the search. What would be the best solution for Katie. Many things I would try were combined with things I had crossed off my list, so I’m left with buying individual options and hoping. This is not an inexpensive undertaking and in the meantime her behavior flows.
But, in all honesty, I’ll take this “What to do when you run out of options” to the many heart-wrenching ones made every day by so many parents. But, in the end, we are running out of options, in so many ways that affect our children daily.
Please, World, hurry up and save them.