Friday, September 2, 2011
My friend Kathy is a planner. When we get together for girls’ weekends, she has incredible restaurant suggestions for us. She knows which art exhibits are coming to town. She and her husband actually go on vacations together because she researches and plans and budgets for them, rather than sitting around wondering, “Why don’t we ever dooooo anything?” Kathy plans; Kathy achieves.
For Kathy, planning meant college, and law school, and marriage, and 2 kids. Which did happen, but not the way she planned.
When her second daughter, Charlotte, was a baby, Kathy noticed that it took Charlotte longer to do things than it had with her first daughter. Those of us a few more years into motherhood told her not to worry, that Charlotte was just fine. I must admit we probably thought Kathy just didn’t get the whole “babies develop at different rates” thing. We may have thought Kathy needed to relax a little.
But Kathy knew. She knew something was different about Charlotte. Kathy spent hours and hours teaching Charlotte to crawl and walk, when other babies did that on their own. When cutie-pie Charlotte started talking, but then lost those words shortly thereafter, Kathy’s friends and family finally began to fathom what Kathy had been trying to tell us all along.
Doctors’ visits, profound fear and sadness, whispered words like “autism,” and feelings of hopelessness entered Kathy’s well-planned life. No one knew what was causing Charlotte’s delays. And no one in our small sphere of friends even had the context to deal with what was to come. You see we were still in the pregnancy and potty training stages where we talked about lack of sleep, chafed nipples and pre-school spats. Depression, OCD, divorce, bullying, learning disabilities and other messy topics hadn’t yet entered our lexicons.
And then came Rett.
Charlotte was diagnosed with Rett Syndrome, a neurodevelopmenal disorder that affects girls almost exclusively. It is characterized by normal early growth and development, followed by a slowing of development, loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, problems with walking, seizures, and intellectual disability. Rett girls cannot speak. Many are in wheelchairs. Every two hours a girl is born with Rett Syndrome.Who knew?
As Kathy said, “We were circling the drain.” The sense of loss for the life Charlotte could have led was staggering. The stress of making decisions for Charlotte’s care was enormous. This was not what Kathy planned for her precious little girl. Kathy felt doomed to a life of sadness.
But slowly the fog began to lift. The planner in Kathy used those skills to educate her family about Charlotte. She helped organize events to fund Rett research. She marshaled her talents to get Charlotte an array of help from amazing teachers and specialists. She plugged into a school system with vast early intervention resources, which even placed Charlotte in a special-needs preschool class right next door to her big sister’s kindergarten.
And most importantly, Kathy bonded with other moms with children with severe challenges and realized she was not alone. And do you know what she saw when she looked at these women? They laughed. They cried. They ran. They had sex with their husbands. They drank wine. They went to Disney. They had more kids.
More kids? “Two and then Through” became a thing of the past. On the practical side, Kathy and her husband did not want their older daughter to bear the sole responsibility for Charlotte’s care when she grew older. So Kathy and her husband jettisoned their plan for two kids and well, forged ahead, if you know what I mean.
But if Kathy hadn’t already learned some lessons about planning before, she did now, when the doctor told her she would soon give birth to not one, but TWO beautiful, healthy girls. Twins!
An orderly life of work and play and 2 kids, is now the busy, bustling life of a house of 4 girls. A happy house that rings with laughter, and tutus and art tables and…. personality!
Charlotte is cherished by her sisters and their friends. Through her, they are learning about differences and love. The twins, even at age 3, already nurture and care for big sis Charlotte. She has a calm, content demeanor. She loves the water, going to school and camp, and her adoration of Troy Bolton from High School Musical went unabated for years. She likes to steal food off her sisters’ plates, which makes the whole family smile.
Kathy would never have envisioned this house full of girls for herself. Just as she would not have envisioned having to share her house with home health aides and specialists and large-sized diapers. Planning and structure are still there, because they are so needed, but so is a degree of acceptance and relinquishing control beyond Kathy’s expectations. This acceptance has led to a rich life and the kind of life lesson none of us asks for but some of us get.
As Kathy wrote to me, “...I am grateful that Charlotte taught me never to give in to sadness. And because of Charlotte being who she is, we now have these two creatures who make me laugh every day. It is hard to imagine not having the twins, but I know for a fact that I never would have tried for another baby if Charlotte had been a typical child…I am sure people feel sorry for me because of Charlotte’s diagnosis. And I know for a fact that people feel sorry for me because I had twins. They are probably so thankful that they are not me. And that’s OK. But I know for a fact that I am lucky. I have four daughters and I love them all with my whole heart. And they are all wonderful and needy and loving and frustrating and sweet and annoying. None of them are “perfect”—except to me!”
Kathy prays that medical research and breakthroughs will help Charlotte and other girls with Rett, and she hopes you and I will be a part of that.
To learn more about Rett Syndrome, or to make a donation for much-needed medical research, please visit the International Rett Syndrome Foundation.
And today, in whatever situation you find yourself, when you may be thinking as Kathy did, and as I sometimes do, “This is NOT the life I signed up for,” remember that you are never alone.
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A friend of mine shared this post with me this morning. I have to say this really hit home for me. Like Kathy, I have been there. We threw caution to the wind and decided to have a 4th child. At 9 weeks pregnant, we got the news of twins! Well, this was exciting but didn't turn out the way we hoped. While nervous at the prospect of the house filled with 5 kids, we started to get excited. Then our world crumbled. Severe complications arised and our twin daughters were born at just 27 weeks gestation. We lost Brooke at only 10 days and Summer got very sick at two weeks old. As a result, Summer has cerbral palsey and short bowel syndrome. She is now 3, doesn't crawl or walk, but SMILES alot! Our family is more complete because of her, richer, happier, more loving... She helps us hold onto the memory of her twin sister, smiles and hugs us when we are sad. She is inspiring and special. And, yes, I too am SO happy to not be alone! Thanks for sharing this...Charlotte is beautiful :)
Oh my goodness. This took my breath away. I needed to read this today. I hate to sound cliche - and I hope you know I MEAN this: thank you for sharing their story.
thanks for sharing this....
So beautifully put.
Stealing from Glennon: Brutiful.
Thank you so much for this. Love the picture of Charlotte and imagining the gaggle of girls around her!
This is a incredible story- and I am in awe of this family.
Thank you SO MUCH for sharing. And I send them love, and admiration.
Fantastic post. Thank you for sharing the story of Kathy and her girls. And thanks for introducing me to Charlotte.
You really write so well. I'm always in awe. And my goodness, speaking of awe. Kathy and her family have my admiration and well wishes. I have never heard of Rett Syndrome. Really, that many girls? I wonder what the deal is.
Thanks so much for this...
I thought I was out of the woods. My 3 girls had all made it through all of their vaccinations... they all made it to double digits even.
But this summer, we have gotten a diagnosis we did not expect. A diagnosis the is misunderstood and invisible to the general public. But is a diagnosis that is wreaking havoc in our home and causing each of us... even our daughter to think "this is not the life I signed up for".
Yesterday was a very difficult and scary day. But we made it through. And I am so grateful for a little more hope today.
This was one of of the most beautiful posts I have read. Thank-you for sharing this story with us - it fills me with warmth.
This post made me cry. Beautiful in so many ways, like Charlotte herself in the picture above.
I am so lucky to have a close friend with a special needs son Oliver's age. While the boys are so different, they are the same age and have even been in the same special needs pre-school. And strangely enough, we didn't know that we would have special needs children when we met - we just lived in the same neighborhood.
It's hard to socialize when you have a special needs kid in tow. They can be a little unpredictable, and to have a play date where the other parent isn't phased by the wackiness... It gives you the opportunity to just enjoy your child around other people without having to explain behaviors or worry about being judged.
It's so true. You're never alone. There are always people out there who will understand - and once you find them, everything looks brighter. Hopeful.
I love you Anna.
Beautifully written from a beautiful heart. I am in awe of how many families face challenges of all kinds with quiet love and grace. Charlotte is stunning and four girls ... well that's just plain fun. Thanks for sharing this with us.
I came across this and my heart went out to her. I am starting to know what she is going through. I am in "mourning" stage. My oldest daughter has been diagnosed with autism. It saddened me that she might not do with her life what she desired. I have learned from her though that it may take a bit longer, but she will get there. Charlotte is a beautiful little girl btw!
Grace, inspiration, love, wonder, courage. All these your friend and her family have in spades. Thank you for sharing this.
Sending your love and hope back to you on this impossibly sad day. Love and prayers are being lifted for you.
"And today, in whatever situation you find yourself, when you may be thinking as Kathy did, and as I sometimes do, “This is NOT the life I signed up for,” remember that you are never alone. "
I realize that those are your own words, but I doubt that anyone could have said it better. I am so sorry for your loss. My heart aches for you and the pain you must feel right now. But please remember, you are anything but alone.
Sending you great big hugs from a complete stranger...I can only hope for them to be the tiniest of comforts.
Sending thoughts and prayers to you. I can not imagine the grief. I pray that one day you will be able to heal. Terribly sad for you. There are no words. My thoughts my prayers. My sincere condolences.
Very well written and very fitting. Thank you for the reminder as I think so many can relate in various ways.
So I found your blog via a post by a friend of a friend of a friend.
Please know that my friends and I do NOT feel sorry for you because of Charlotte’s diagnosis.... though I DO hope that we can empathize.
Also, if you "know for a fact that people feel sorry for me because I had twins. They are probably so thankful that they are not me." Actually, no, some of us do not feel sorry for you, nor are we thankful that we are not you. Honestly, I have friends who wished to have children and could not. Some went through years of treatments, hoping against hope to have a child. Some have adopted, and some have not.
With that said, I do understand that your family is facing many challenges which I, and my friends, are not. And, of course, my friends and I face challenges which you do not.
And finally, no, this isn't a rant nor a critique - so please, don't take it as critical.
Oh my, on re-thinking my earlier comment just now...
I think my earlier comment was mis-worded.
So, by saying that 'my friends and I do NOT feel sorry for you because of Charlotte’s diagnosis', I meant to say that, I don't want to be the person who 'feels sorry for', but rather the person who empathizes.
I hope my earlier comment didn't seem to lack empathy or perspective. [It probably did.]
WRT having twins, well, that is also none of my business. I just know so many couples who would love to have children, and who frankly cannot. Again, not wanting to criticize.
I'm really sorry that my earlier comment likely seemed un-empathetic. If that is even a word.
What an amazing story. It is so great that you have the insite to share this intimate part of your life. My kids are healthy, thank God, but I have learnt so much from you. You are an inspiration.
Wow, I love this post. Especially the last line. Thank you for writing this!
I clicked on a link to your blog on Any Mommy Out There and it shot me to this post...a post that was written just a few days before I started reading your blog religiously, after googling the article of that day to know what in the world happened in your life that two other blogs I read would mention it in theirs, reading because I so want to follow this leg of your journey, to pray for you , and find gratitude in my life...Love your friends outlook on her life...love your words that created the picture of her life...love your message of strength, hope and going with the plan of a Higher Power. Anna, thank you.
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