Archive of ‘Williams Syndrome’ category
“Life isn’t about surviving the storm. It’s about learning to dance in the rain.” -Unknown author
Mother’s Day 2017 was yesterday. My mama stopped by and gave me a bracelet with that quote on it.
We’re not touristy at all. (after hospital stay)
I didn’t realize until I read the bracelet that I have gotten pretty good at rain dancing. I know that in general I am a glass half full person. It is just who I am. I can’t dwell on the difficult or the Hard for too long. Sometimes that isn’t the healthiest choice but I’m working on it.
One of the last photos I took before the accident.
Sometimes it catches up to me.
Sometimes I watch others get frustrated, angry, sad, infuriated; and I feel myself get frustrated because when do I get a turn to feel that way? But that is my choice. I am trying to learn to allow some anger, some sadness, some frustration into my emotional arsenal.
But rain dancing. That I can do.
But I don’t realize I am doing it until later.
In front of a volcanic crater lake. NBD.
So we went to Iceland. My outdoorsy, mountain loving, traffic hating, lovable hunk of a husband talked me into a week long trip in the most sparsely populated country in Europe. And I was so glad, and continue to be glad that we went. #icelandisstillnice
For the ten of you who read my blog who aren’t family and friends- here is a brief synopsis of what happened on Day 5 of our trip.
We had reservations to take an one hour horse back tour with a guide across the countryside of Iceland. Our son receives hippotherapy twice a month and I have always loved horses. Todd had never ridden and knew it would be special for me so we booked it. We dressed in these huge rubber trousers that were similar to what fireman wear, and we set off on our beautiful thick-coated horses with our young but experienced guide. About 5 min into the trip, we both commented how well trained the horses were, how easy they were to ride, and how much fun it was. We all stayed in a nice line – the guide, then me, then Todd. The guide asked if we minded doing a slight trot with the horses and of course we said sure, so we trotted a bit. It was fun but when we slowed down, I could feel a difference in my horse.
He wanted to keep trotting. He was very close to the guide’s horse and if I tried to pull the reins back, he tussled a bit with me. We stopped to take pictures and then my horse started walking off to the side a bit. I tried to lead him back over, and for a split second it seemed like he was going to obey but then something just changed.
No loud sounds, no strange movements by me, the horse just started to run. My first instinct was not to use a calming voice like she had suggested because of course I was startled and frightened. But then I remembered and I tried to use the techniques she suggested.
Terribly unflattering photo of my first time sitting up in a chair at the hospital
He wasn’t having it.
He took off like a shot and the rest is history.
History that changed me.
History that brought on more rain dancing.
What followed was a six night hospital stay at one of the two hospitals in Iceland, in the beautiful town of Akureyi.
I received/suffered/endured (not sure what the right wording is) five fractured ribs, a punctured lung with a pneumothorax, and a broken sacrum.
Five broken bones that cannot be put in casts. Cannot be set. And the sacral bone is what I make contact with, every time I sit down.
View from my hospital room
It was scary. I’m not gonna lie. Lying on the ground after being thrown from the horse, coughing up blood. I couldn’t turn either way because my broken bones are on opposite sides of my body.
It was scary.
But I knew I would be okay. Something kept me calm. Something told me that it wasn’t going to be fun, but it was going to be okay.
The handsome Icelandic EMTs who sat with me in the ambulance, telling me how much time was left until we got the hospital, they told me it would be okay.
The nurses who greeted me, who sat beside me in the ER while they tried to figure out what was broken, and how serious everything was. They kept me calm. They talked to me like everything was okay.
They know how to rain dance.
Helga, the young nurse from a nearby town in Iceland who had attended nursing school in Chicago. She gave me a foot massage and chatted with me about every day things, just to keep my mind off the pain. She helped me brush my teeth and wash my face myself for the first time after being hurt.
She knows how to rain dance.
Skyping from far far away…
“Take a car ride to Iceland?” said Evan one night when we Skyped. My heart broke but there was also a part of me that felt such joy that my little guy missed me so much and wanted us home. We have worked so hard on keeping him engaged and connected to us- and he really missed his Mommy and Daddy.
It was very hard to dance in the rain when I thought about my kids from my hospital bed- but my friends and loved ones kept texting, emailing, calling, sending cute little videos so I could hear their voice and see their smiling face. (I’m looking at you Talia!) In times of strife, you really do realize the love and light in your life.
And then we finally came home. After a 5 hour car ride to Reykjavik and a six hour flight home, we came home to a clean home, and sleeping, very loved on children. Thank you Mimi, Pappy, Gran, and GrandRich!
Chilling with my girl
For the past 2.5 weeks, I have been setting up shop in my bed, regularly icing my fractures, trying to stay comfortable, and walking around when I can. I went from a wheelchair to a standing high walker, to crutches, to a slight limp.
Rain dancing was really hard the first week I was home when I couldn’t sleep because the pain was so intense. When I had to get an elevated toilet seat because I couldn’t bend over at all. When my son only wanted to climb on my lap and no one else’s so his behavior became erratic and he acted out.
But somehow we got through it. And one day I looked to my left and both kids were in bed with me. Melody in the crook of my arm and Evan lying next to her. He looked up at me and said, “Hi mommy! Can I go in Mommy and Daddy’s room? Can I cuddle you?”
He asks questions that he already knows the answer to as a way to communicate and stay engaged with me.
It hit me all at once. Without realizing it, I had been enjoying my time with both kids immensely. Take out the responsibility of keeping up with housework, teaching, and all that was left was a focus on my recovery and the time spent with family. I felt guilty that I couldn’t do the dishes or walk down the basement steps to do the laundry. I hated not being able to take the kids were they needed to be.
Enter rain dancing.
All that was expected of me was a focus on my healing and when I felt well enough to sit with the kids in bed- this awesome thing happened. They both figured out ways to spend time with me in bed.
Evan reading with his head in my lap (ribs protected by a pillow)
Mother’s Day music time
Just last night, Melody snuggled up next to Evan and just said to herself, “I love you, Evan.” and closed her eyes and smiled.
Those moments are hard to catch when I am caught up in cleaning up after the kids at night, making lunches, laundry, and my mind is 153 different places.
I want to remember this.
I want to remember what it feels like to just focus on family. Just focus on the kids, my husband, my mom. Whomever is with me at the time.
I know that will become difficult all over again when I go back to work in a few weeks and more responsibility is back on my shoulders. But I do hope that I can remember what it felt like to dance through the raindrops these past few weeks.
after writing this earlier today- Evan had a seizure, after having one last night. He had four in one day last week. I felt myself tense up all over. The worry is back, the concern over if we are medicating him correctly. The neurologist is talking about more aggressive meds, new tests….
Rain dancing is really really hard when these things crop up.
Just being real.
But tonight Evan put his head on my stomach and listened to the digestive sounds it was making and we had a huge laugh about it. I used to do that with my mom growing up, and it cracked me up. He likes to play with the word and pretend to say the ch sound at the end so he kept giggling and saying, “stomach (with the ch digraph sound)” and then “how are you?” with a big grin on his face.
I’m going to think about the stom-itch sounds instead of the seizures.
At least for a little while.
This is the post that a friend told me I would write eventually. The one about having a child with typical development following a child with special needs. The one that has me simultaneously in awe, and slightly heartbroken.
In a nutshell, a hard post.
This morning I decided to organize Melody’s clothes. She has a few bins of hand-me-downs from friends that are willy nilly all over her room and it was high time that I went through them. On the dresser was a Baby Einstein book with buttons on the outside. When pushed, they play short snippets of classical music. Evan had a few of these books. I remember his adoration of them. I remember being in a store and giving him one of them and he would play with it for the entire store visit. This was Evan’s norm. He could be given a toy- especially a musical or push button one that had some type of cause and effect mechanism and he was good to go. I could go to the basement to do laundry while he sat on the floor of his pack and play at 18 months playing with a musical box, pressing each side over and over, laughing, singing, etc.
So today, when I ripped off the plastic on this book for Melody, I thought, “Hmm, this will be perfect. I will give her this book, she will be so excited to play with this new electronic toy- that I will be able to organize and she will be happily occupied. (and without T.V! score for Mommy!)
I gave it to her, and she smiled through her pacifier stuffed mouth and tapped the book on the cover while looking at it quizzically.
I turned to my pile of clothes and started sorting. A few minutes later I noticed M walking around her crib. Thought nothing of it. Still sorting. Then a few min after that she was in her closet trying to open boxes. Few min after that, she was crawling in my lap, trying to get me to put a headband on her head through several gestures and vocalizations.
That musical book is not magical.
Melody is not caught in its spell like Evan was. (and might still be if given the opportunity. do NOT mention Fisher Price to that kid)
She is more interested in playing.
interacting. keeping joint attention.
throwing fits when she doesn’t get her way.
doing what 14 month olds do.
Not what my child with Williams Syndrome and autism did at that age.
I have these moments a few times a week. Actually probably a few times a day but I don’t dwell on every one. Melody is not a baby genius. She is not advanced. She is just developing at a typical rate. What is true is that things come much easier to M than they did for Evan.
On one of our trips to see Dr. Mervis, I remember her saying that Evan really needed to practice dropping objects into containers. I think he was about 18 months at the time. He would hold things over a box or a bucket but not let go. This was HUGE in the eyes of the early intervention evaluators. I had never thought about it before they pointed it out to me. I can remember like it was yesterday, the night after we saw Dr. Mervis- Evan dropped his elephant toy into one of the hotel room drawers and we all celebrated. It was a massive milestone and we lamented that he waited until AFTER the research study to do it.
I can’t remember the first time Melody dropped an object into a container. It’s as though she has always done it. I can even ask her to retrieve a toy and she will crawl behind furniture to get it and bring to me.
Climbs. Every. Thing
This difference in development is both fascinating and tough. I constantly am asking Todd, “Did you see her do____________??” Did you hear her say ___________? Did you see her point to her body parts?
That is the fun, exciting part. The hard part is the little tiny punch in the gut I get each time I realize what Evan wasn’t doing at Melody’s age. I feel a weird guilt that I didn’t know any better but also……………. relief that I didn’t know any better.
I have heard that the really hard part is when your younger child starts to move ahead of your older child developmentally.
Well, we’ll cross that bridge when we come to it. For now, we are just enjoying our kids and doing our best to celebrate all their achievements and not get caught up in every “Wow, I get it…..” moment that occurs.
Hey Mom, you can be proud of both of us!
“It’s learning time!……………..It’s music time!………………It’s game time!……………………..”
Probably his favorite memory from the holidays was finding this waiting for him (WITH BATTERIES) at Mom-Mom’s
Anyone with children, or daily exposure to young ones- has probably heard those phrases coming from a few different toys. Fisher Price has done this very lovely thing and used the same sing-songy female voice to say “It’s learning time! It’s music time!” when you press certain buttons on their toys. Most distinct examples are the Laugh and Learn Puppy and the schoolhouse frame you see in these pictures.
Evan loves this toy. No, he LURVES it. With every ounce of his bouncing, joyful being.
Here’s the catch. I do NOT love it.
In fact, I get a knot in my stomach when I see it in the store or at someone’s house. (please do not feel badly if Evan has played with it at your house, believe me, this is my hang up, not his)
I used to love it.
Evan started a cause and effect game with us using this toy. He would open and close the mailbox until he would get the right combination to produce the alphabet song. Then he would glance at us (mommy and daddy) to wait for us to sing the song along with it. We were so tickled that he figured that out and he was connecting with us through this game. This was when he was about 17 months.
Notice the abundance of musical, electronic toys. This was before we visited Dr. Mervis and were advised to get rid of all the toys that had on-off switches and incorporate more “old-fashioned” toys. This suggestion was made to encourage Evan to do more engaging play that required him to use his imagination and also communicate with us when he needed help.
Herein lies the title of this entry. When Evan encounters this toy, or any toy that is similar in fashion- one that has a switch that turns on music, action, or lights, he becomes entranced and very involved in the toy. It is difficult to get his attention and even more difficult to elicit any communication.
My heart literally ached on Christmas afternoon when my dad’s wife (he calls her Mom-Mom) came in the room to greet Evan and he didn’t even look at her. Not a glance. He was busy roaming around the schoolhouse frame and turning on and off those switches he remembered so well. She hugged and kissed him anyway and went back to cooking. Honestly, she did not seem to be bothered by it at all. She was happy to see him and thrilled that he was happy. And there I sat, knot in my stomach, blinded by the diagnosis. Blinded by the lack of engagement that we have been working so darn hard to increase. I didn’t see my happy son who was being pleasant, even-tempered, and occupying himself with a toy he loved. I was seeing the disability, the developmental delays. The very thing I preach about looking past.
There are moments, days, weeks, that can go by where I am thrilled by Evan’s progress, excited to discuss Williams Syndrome with friends, touched by the smiles that Evan elicits from strangers. Then there are days like this. When I wake up, filled with hope and expectations of a wonderful day spent with family. And by the end of the day, Evan is in the backseat of the car, scripting away, “It’s learning time!” It’s music time!” and I have to fight back tears. The word defeated feels accurate and awful at the same time.
(As I type this I can hear him singing along with his beloved Signing Time DVD, which also repeats, “music time, signing time, story time,” etc over and over. He does love Rachel. I’ve often said he would run off into the sunset with her or with the ladies from Baby Babble.. but that is another story.)
A quick moment I grabbed
Lately I have been having a more difficult time embracing the joys, embracing the progress that I blogged about so recently. I know it is due to the holidays. Due to the stress I was under at work this past month. Due to the hustle and bustle of non-stop gatherings, entertaining, and changes in schedule that occur for everyone this time of year. I struggled with whether or not to write about it.
Because I do strive to see the positive slant on things.
I do realize how incredibly blessed we are.
But it would be a disservice as a writer (and a deeply sensitive one at that) to ignore the ugly truths that creep into our lives. To not acknowledge that being a parent of a child with special needs is hard. Capital H. Hiz to the ARD.
Being a parent is Hard.
Being a human being is Hard.
But being honest about it is freeing. Knowing that the Hard is worth it. Knowing that there are plenty of others out there who are also dealing with the Hard. And we don’t have to pretend that it is easy.
We just have to admit that this happens too:
Thank goodness there is also Joy. With a capital J.
I was getting ready in the bathroom the other day and I felt like I needed some music to move me along. One of my favorite albums is the Parenthood TV soundtrack. I am one of those. Those who LOVE soundtracks. My dad and I would croon along to the Cocktail soundtrack on roadtrips. And don’t forget the infamous cassette tape of us singing “I’ve Had the Time of my Life,” from Dirty Dancing. (recorded in an amusement park “recording studio” nonetheless) It’s kind of amazing, and kind of scary.
Anyway, I heard these lyrics, loud and clear:
If you have a broken heart or a battered soul
Find something to hold on to or to let go
To help you through the hard nights like a flask filled with hope
Darlin’ do not fear what you don’t really know
“Cause it won’t last – your worries will pass
All your troubles they don’t stand a chance
And it always hurts the worst when it’s the ones we love the most
Darlin’ do not fear what you don’t really know
Do not fear what you don’t really know.
How simple is that? Do not fear the unknown. If you cannot control it, and it is in the future, however distant- don’t fear it. Clearly this is much easier to read and talk about, than it is to put it into practice.
But I thought I would try.
Should I focus/worry about the things I do not know for 100%, like will Evan develop heart issues? Will I get pregnant again? Will we have another baby with special needs? How will Evan be accepted in school?
Darlin’ do not fear…..focus on the things you DO know.
This I can do.
I know that we participated in a fundraising walk for Williams Syndrome this past weekend and we were surrounded by people who love us.
I know that Evan is finally starting to use the pronoun “I” when talking to us.
I know that Todd gave me a mother’s day card yesterday and in it, he listed all the things I do for Evan and it made me melt.
I know that Evan played with his new teddy bear and practice pretend skills without any prompting.
I know that I work with some of the most supportive individuals.
I know that all I need to do is make Evan giggle (not a hard feat) and my mood will lighten.
I know that the beach is a happy place for me, and I was able to go there a few weekends ago (BY MYSELF) because of the kindness of a friend, and the support of a loving husband.
I know that it brings me a type of peace and pride to share about Williams Syndrome to anyone who will listen.
For now, I can heed Brett Dennen‘s advice.
And it’s all about that, right, the moment to moment observations?
Take a chapter out of Evan’s book.
My heart has been weighed down with this blog entry for about a week. It has haunted me actually. Needing to be written. I mentioned in my last post that I’ve suffered multiple miscarriages. So it’s not a secret, but for some reason I have chosen not to really delve into it on my blog. I think partly because my first miscarriage was so wrapped up in my father’s passing, that I didn’t really process it. Evan was born a year later, and we chalked it up to one of the very common first pregnancy miscarriages that we’ve read about.
But here I sit four years after that dreadful week where I found out I was pregnant, lost my dad and then lost our first baby all in one fell swoop. Since that point we were so incredibly blessed to become pregnant again (very quickly much to our surprise) and have a beautiful baby boy.
Evan Robert June 2011
We received his diagnosis of Williams Syndrome a year later. Since that point, we went back and forth about having another child. The discussion was laden with many factors. Our age, the possibility of having another child with a diagnosis, and my fear of another period of awful post-partum anxiety. Ironically, we didn’t really discuss the possibility of miscarriage. It may have crossed T’s mind, but I didn’t really consider it very seriously. I was more worried about what would happen after the baby was here, not the possibility we might lose another one.
If there is anything I have learned in these last 4 years, it is not to count anything out. The good possibilities and the bad ones. The very good and the very bad. I tried so hard to rest in the mystery, rest in the unknown, put it into God’s hands. I had prided myself in losing the need to ask “why” all the time for the challenges in our lives. I realized that no matter what I did, things were going to happen, good and bad, and I might never know the reason. It’s in God’s hands, I would tell myself.
For whatever reason, God’s hands decided to change our trajectory yet again. He decided to take a second child from us before we could even meet him or her. I am a Christian and darn it, this has tested my faith like nothing else.
I’m pissed. I’m frustrated. I’m devastated. This time around I most definitely am processing it. Whether I want to or not. As my friend Jamie said, “The universe is making sure you go through it.” She is so right. Beautiful, glowing pregnant women everywhere. Some are very treasured friends of mine who I am thrilled for. But that doesn’t make the loss of our baby any easier. Baby showers, pregnancy announcements, smiling babies at Target. National Siblings Day was celebrated all over Facebook the other day. Another reminder that we may not be able to provide a sibling for our son. Repeated blood work to make sure my pregnancy hormones are going down. Unsuccessful blood draws that have led to repeated visits to get MORE blood drawn. Weeks of cramping and bleeding after we lost him or her. I won’t even go into the actual physical process of losing a baby. It’s horrific. I am conflicted about it because I understand why people don’t talk about it, but at the same time, when you go through it you feel so alone. No matter how many people love and support you. You are on this island, wanting to grieve your baby and still physically carrying him. It’s simply awful.
It’s not fair. I want to kick rocks and scream ala Charlie Brown.
Actually, I want to stop kicking rocks and crying. I want to get over this, and move on. But I know that’s the whole point of crying and kicking rocks. In order to get through grief, you actually have to feel it. Well jeez. That just stinks. I like to keep moving. To keep busy and focus on the beauty that is around me, not the pain and crappy stuff. It’s not really part of my genetic make-up to focus on the negative. But it’s also part of my genetic make-up to take care of everyone around me and sort of forget myself.
So…..here I sit. and I walk with Sorrow. And I am sharing it with you because it is the only way I know how to be honest with myself. The days I sat at home waiting to pass the baby, I tried to find blogs about miscarriage that would help me feel less alone, but also give me some hope. This poem gave a little light to my walk:
I walked a mile with Pleasure;
She chatted all the way;
But left me none the wiser
For all she had to say.
I walked a mile with Sorrow,
And ne’er a word said she;
But, oh! The things I learned from her,
When sorrow walked with me.
-Robert Browning Hamilton
So today I walk with Sorrow. And as strange as it sounds, I feel less alone for it.
I loved Punky Brewster growing up.
Who wouldn’t want to be as cool as this chick?
So much so that I would wear a bandana tied around my knee and I wished my name was Soleil or Moon more than once. One particular episode remains emblazoned in my mind. The “Very Special Episode” surrounding the exclusive club, The Chiclets. Click HERE to see them in all their scrunch sock glory. You can watch the first minute or so to get the idea. The Chiclets were this “totally awesome” group of stylish sixth graders that Punky was dying to be a part of. Turns out that they are “like totally” into drugs. Specifically “grass, a few uppers, and some nose candy.” Pretty sure I had no clue what any of that was when I was eight years old. Of course, Punky decides that she does NOT need to be a Chiclet and that she is much better off following Nancy’s Reagan’s advice and creating a “Just Say No” club.
I may or may not have created a similar club with my best friend on the second grade playground that met over by the see saws.
(around 1986) I was probably wearing this awesome floral romper as well.
Clubs. Secret societies. Exclusive groups with super cool people in them.
We have all wanted to be a part of one at some point in our lives.
As an adult I have realized that I have been thrust into several of these clubs without my permission. Hoodwinked you might say.
The sudden loss of a parent club
The parent of a child with special needs club
The multiple miscarriages club
I don’t think a super cool gal like Emily with her charm necklace and pastel sweater came up to me when I turned 30 and said, “Hey, Erin, wouldn’t it be great if you joined our club? You know, the one where all the members have lost a parent before they could become a grandparent to your children? Do you want to join the club where all the members have suffered more than one miscarriage?”
I think I would have remembered that.
So here I am. A member of several clubs. Ones I would never have asked for membership.
But something crazy has happened. The messy, beautiful person I am today, would not be nearly as messy, and nearly as beautiful if not for being a member of these clubs. And not just because of the circumstances that led to my membership. Not because I lost my father without warning almost 4 years ago. Not because I have lost two babies before I could even meet them and hold them in my arms. Not because I am the proud mother of a little boy with Williams Syndrome
President of my club
Because of the INCREDIBLE club members I have been so privileged to meet. Because of the women who have become my friends. My sisters. My guides through this brutiful life. I would never have started blogging if it weren’t for my membership. I would never have met some of the most amazing women who I can reach out to any time of day or night and I know they will “get it.” I don’t have to explain what it feels like to wake up in a sweat because I dreamt about my father again. I don’t have to feel guilty when I message one of them to tell them I am feeling super overwhelmed by the prospect of Evan starting preschool with his school district peers.
I laugh with them. I cry with them. I spit nails of anger with them.
They somehow know me without needing to have been in my life for years and years. Some I have never even met in person. Some I did meet and it felt like they were a member of my Just Say No club on the playground in second grade.
I would never have met them if I had not gone through some of the most painful, difficult, and life changing events of my life.
Just this weekend I had the absolute privilege of attending a brunch for mothers of children with Williams Syndrome. It was like taking a deep breath of fresh air for 4 hours. I laughed, I cried, I listened and I shared. We have had Evan’s diagnosis for almost two years now, and there were some mothers with very newly diagnosed infants at home. I could see the fear, the pain, the hope in their eyes. And for once, I actually felt I could speak from experience and maybe even ease their worry a little.
Because of the pain, the struggle, the worry I have felt, I can support others who are going through similar experiences. One sweet mama told me that my blog actually helped her see a future for her daughter, helped her to see past the colicky, sleepless nights that are her everyday right now. Tears immediately came to my eyes.
There it was, the reason I started blogging. To help others who might need a voice, who might need to feel less alone. And to think that might actually be happening? Phew.
Thank goodness Emily in all her pastel scrunchy glory did not ask me to become a member of any of these clubs. Because I would have just said no.
(see what I did there?)
Sometimes we do not get asked. And we feel very angry about that.
Ahem….We meaning me of course……but maybe you are angry too? and that is more than okay, it is right and totally warranted. But I am just so glad that I can pull myself out of that murky angry place and realize that other women need to hear that it CAN be okay. You CAN lose a parent and wake up one day and realize it is not the first thing you think of. You CAN raise a child with special needs and see joy and beauty time and time again. Miscarriages do happen and they suck big time but you are NOT alone. There are so many women who have walked your path and would love to walk it with you. Or kick rocks. Or drink wine, whatever works.
I have plenty of women who did all of those things with me, and continue to.
I’m glad they are in my club. Maybe you are too?
This essay and I are part of the Messy, Beautiful Warrior Project — To learn more and join us, CLICK HERE! And to learn about the New York Times Bestselling Memoir Carry On Warrior: The Power of Embracing Your Messy, Beautiful Life, just released in paperback, CLICK HERE!
Colorado August 2010
I wish I could give you a big hug. Tell you that you are going to make it through the summer okay. The unbearably heavy sadness will begin to lift and change into a more permanent hole in your heart. It doesn’t sound great, but it is much better than the pain you are in now. 4 years later and I still think about him almost every day. But it is not the first thing I think of when I wake up in the morning anymore. When I dream about my dad now, I wake up happy that I had a chance to see him. It is not going to make any more sense than it does now. I wish it did. But you will find ways to remember him. Ways to honor him in your every day life. You don’t realize it, but next month you are going to discover you are pregnant. It will blow you away considering your pregnancy loss just two short months ago. You are going to get a chance to see glimpses of your father every day, through the eyes of your son, Evan.
Dear soon to be mama,
Tomorrow your life will change in ways I cannot make you understand right now. You will pace around the house tonight eating waffles and stopping every now and again to wince from what you “think” are the real deal contractions. Hold on sister, because they are just the previews. I want to tell you to breathe. Breathe in the peace, the silence, the feeling of being one with your son before he is born. Before he is out in the world and you have to care for him in such a different way. Know that things are going to change and they are going to be hard. Really hard. But I can tell you with certainty, it will not last forever. It is okay if you don’t make it without medication during the birth. It is okay if you struggle with nursing. As a good friend of ours says all the time, “no one gives out medals if you do those things.” GIVE YOURSELF GRACE.
One day old Evan in the NICU
Dear Mama of a newborn in the NICU,
It’s going to be okay. He is fine in there, he is cared for so well by those dedicated nurses. I know you want him back in your room with you so badly because he is your little guy, you can’t believe how quickly he was swept away. But in a few days you will be home with him and you will be wondering why you didn’t sleep a little more while he was in the NICU in such good hands. His levels will increase, and you will take him home. Breathe.
Evan- a few days old June 2011
Dear very new mama with newborn at home,
This is the hardest letter to write. I look at this picture and I know the turmoil you are feeling. I know the insanely strong love you are feeling for that little man but also the intense feelings of responsibility, fear, worry, and guilt that are swirling around in your very sleep deprived head. I know you feel like you are physically attached to your child, and it is hard to get a chance to shower, sleep, eat, without needing to nurse, pump, or prepare for the next nursing session. And oh the guilt…..oh the horrible, purposeless, painful guilt you feel every time you wish for a moment by yourself. And then by the grace of god, you get one of those moments and you lie there trying to nap but you can’t because you feel like you should be holding him. Everyone is telling you how awesome it is to have a newborn and you just want that to be true. Instead you are walking around like a zombie, and worrying that you are not fit to be Evan’s mother.
Okay, so that is where I step in. You are wrong. You are the best mommy that little guy has, and he needs you. He needs you to take care of yourself and GIVE YOURSELF GRACE. No one is going to judge you if you need a nap. No one is going to judge you when you need to stop nursing because it is too much. It is hard right now. Capital H. HARD. Not hours and hours of non stop joy. Hard. Your hormones are plummeting, your hair is falling out, and you are getting up 4-5 times a night to care for your son. It is okay for it to be hard. Let it be what it is and I can tell you…..he WILL sleep through the night. Not when he is three, like some very mean moms have told you……When is about 13 months he will start to consistently sleep through the night. And before then you will get blocks of 5 hours at a time which will feel like absolute heaven. And all those doubts, those fears, those ugly nasty statements of guilt and shame you keep rolling around your head? They will soon lift as well. You will realize, you are doing okay. He is in one piece. You can take showers and he will sit in the bouncy seat and be just fine. You can make breakfast while he plays on the carpet with his toys. The HARD will soon become your normal and you will not even realize when the change happens.
Evan a few weeks shy of one year old May 2012
Dear Mama of an almost one year old,
This month is going to end on a very tough note for you. You have no idea what the doctors are going to tell you about your beautiful baby boy who lights up your every day. You have been cleaning up after hours and hours of repeated vomiting. You flinch when he coughs or gags because you know what follows. You have been trying different foods and trying some of the same foods Evan used to eat and he won’t have any of it. You worry because his weight has plateaued and the doctors just can’t seem to figure it out. You are going to go through his birthday weekend telling yourself that he does not have any genetic condition. That he just has a gastrointestinal issue and medicine or surgery will fix it one day. Mama, I say this gently, but you are wrong, and as I have said before- it is all going to be okay. Evan’s diagnosis will not change one bit about your relationship with him. If anything, mama you are going to become one dedicated advocate for your son. And Evan is going to start Early Intervention services, which will be scary, strange, and hard for you at first, but soon it will become a welcome support that you look forward to each week. Evan is going to flourish with his therapists. He will be eating some solids by the end of the summer. You would never believe it, but today, at almost three years old, Evan ate chicken nuggets, fries, and apple sauce for dinner. Toddler gourmet for sure, but I know how impossible that seems to you now. But he will. Keep at it mama, he needs you to be strong for him. That doesn’t mean you can’t cry or mourn the loss of the child and future that you had all planned in your head. Tears do not negate strength. They are a sign that you are being honest with yourself. But please know, that as you learn more about Williams Syndrome , the easier it will all become. Evan is going to do some amazing things. Just wait until you hear him say “I love you,” for the first time, ride a horse, and walk across the playground. It’s all worth it. He’s even going to go to school in the next few years. I know, don’t throw up. You are going to survive it. It is going to be so wonderful for him. And for you and Todd.
This is going to happen a few years from now.
I’m telling you. It’s going to be okay. xoxoxo
Bear with me, because I feel like I am going to be a little scattered when writing this. Could be the head cold or could be that this topic has been swirling in my head for a while now.
Evan is almost three. Gulp.
Where has time gone?
When he turns three, he loses early intervention therapies (and beloved therapists) and then becomes a part of the school system in our town. As a part of the transition process, we have several meetings with the child study team where we discuss Evan, schedule new evaluations to be done, look at results, discuss how he has been doing. and make an educational plan. The experience of being a special education teacher with my Learning Disabilities Teacher Consultant certification who now has a child with special needs is a whole different blog entry. Phew, it sure is.
But the one thing that popped up of course is that Evan has Williams Syndrome and the school district professionals had never heard of it, nor had serviced a child with it before. I was thrilled when the school psychologist brought along his intern to our first transition meeting and you could tell she had read up on WS. She asked a lot of informed questions and shared some things she had read. Then a few weeks ago I received an email from the school psychologist saying that they had already done a little presentation on WS for some of the teachers at the school and he hoped to educate most of the staff on WS before Evan starts school.
Great! Wow! They are really proactive, they want to learn and be prepared!
Well, that is how I felt at first and that is how I still “sort of” feel. (and believe me, I am nothing but happy with the process so far, they have been great) But I’m finding myself a little perplexed lately. I wear my WS awareness bracelet. I am THRILLED that the drama club in my school district has chosen the Williams Syndrome Association as their community service project. I will easily and happily discuss Williams Syndrome with any person who wants to learn.
But what about Evan?
about 32 months
Evan is so much more than the term Williams Syndrome. So much more than 25-28 deleted genes out of over 20K. So much more than the starry blue eyes, low muscle tone, heart issues, hypercalcemia, lack of stranger anxiety, the constant song in his heart- that can all be attributed to WS, or not?
He is so much more than that, but….he also is who he is partly because he has WS. It is part of what makes Evan the unique individual he is.
Do you see why I said bear with me? This is tricky. Tricky because now he has a label. He has a label and he isn’t even three years old. Teachers can look up WS on the internet the month before getting Evan in class, and assume that he will be overly anxious, overly friendly, and bad at math. Will they see Evan for Evan? Or will they see WS first?
I teach second grade. And I HEART my students. Big time. I am helping to promote a local event that will support the WSA. There is a ten minute clip that pulls excerpts from the movie Embraceable, that I find to be the most amazing way to learn about Williams Syndrome. You can find the clip HERE if you click on the Vimeo video. The teacher I work with asked if I would consider showing it to my class to spread more awareness with them. I was surprised at how I felt when I considered it. I faltered. I felt anxious, unsure. Would the kids understand? They LOVE Evan. When I bring him into school they follow him around like he is a celebrity. The children in my class are all approximately seven years old. Would this make sense to them? Would they still see Evan as Evan or would this new label be what sticks? Does that matter? I don’t know….
I watch the video clip and I cry. Every time. Not because I am sad. More because it makes sense to me now. Because I see my son in those clips. I see little bits of his possible future. I see myself in the faces of the mothers who are gazing at their child’s colossal smile. And I do not feel at all ashamed or badly. But there is still a part of me that wonders by me pushing the label of WS out there, so boldly, so fervently- what could that mean for Evan?
I want him to have opportunities. I want him to be loved, liked, played with, looked up to, laughed with. The same things most parents want for their child. Do I want him to be the poster child for WS? I don’t know. By blogging and putting our story out there, it certainly seems I do.
This is one of those entries where I would just love to hear your thoughts on this. I have heard from other parents who have chosen to not share the diagnosis with certain people in their lives because of different reasons.
Should we give others the benefit of the doubt and hope that they see our children as whole individuals, and not just a diagnosis?
Labels? Should they stick? What do you think?
I feel physical pain when I look at this picture.
This is hard to write about.
Tonight I walk the line.
Tomorrow I probably will too. I might stay on one side, linger for a little while, and then I will go back to the line. Teetering ever so slightly, trying to keep my balance.
I walk the line between complete acceptance of Evan’s Williams Syndrome, almost to the point of celebration- and complete worry, disappointment, and concern for his differences and how they will affect him throughout his life.
When Evan giggles and jumps in his car seat peering out the window, simply thrilled to be waiting for me to bring in groceries and to see me peek out of the door to see him- I celebrate his WS. I celebrate that he is filled with joy, simple, unadulterated joy about 80% of the time. When he whispers “I la you” before I leave his room at night- three words we have worked on for over a year, I celebrate. When the director of his preschool writes me a note, thanking ME for allowing them to be Evan’s teachers because of the light he brings to their lives- I celebrate. (I also blubber like a weepy fool- but that is another story)
When I watch video of adults with WS lamenting how difficult their high school experiences were due to bullying, I am concerned. When I hear an adult with WS say to a newly diagnosed child’s father, “I am so sorry to hear she has WS, it can be really hard,” I hurt. When Evan greets someone with a happy “Hi!” and then repeats it over and over and over no matter how many times the person responds, I feel a little weird inside. I feel guilt because of course I know he means well, he just wants the positive interaction- but I also know the recipient is wondering how to respond. And then I start thinking about what will happen when he is in middle school and he greets others with no abandon. When I listen to other children Evan’s age and I realize how far behind he is with speech and language, I can feel disappointed. I live in a little bubble sometimes, where Evan’s progress is only compared to Evan’s progress. Until, it’s not anymore.
When I hear E singing on the monitor, singing, “The Water is Wide,” and then humming the parts where I hum because I do not know the lyrics, I feel joy. Pride that my son has Williams Syndrome. That he has an emotional connection to music that even I cannot comprehend. When I talk to others and educate them about WS, I enjoy talking about it, I feel pride in every detail that I share.
But then I can be quick to say, “But don’t forget, Evan is not defined by his diagnosis. He is Evan first, and he just happens to be missing a 25 or so genes out of over 20K that we each have. It is just a small part of what makes him Evan. ”
I just keep walking that line.
The line between celebration and worry. The line between pride and guilt.
I can say that I am on the side of celebration far more than I am on the other side. I feel very blessed for that to be true. But the other side exists. And it can be an ugly, dark spot to step into.
That is why I walk the line.
Striving for Celebration
I can hear Evan in my mind singing along with me, “Hide it under a bushel?”
he exclaims with his hands awkwardly banging together in insistence.
“I’m gonna let it shine…”
Recently I made a decision to take care of myself in a more deliberate way. If you know me personally, then you know about it first hand because I have a hard time not talking about it. I decided in December to do a 14 day sugar detox. I signed up with a friend’s healthy living business- Smart Sexy Living,
and cut out gluten, refined sugars, and processed foods for 14 days. It was harder than I could have imagined and more rewarding than I ever thought possible. It taught me so many things about myself and how I look at food. I don’t want to make this whole post about my new lifestyle. But I do want to share why I have made this choice and why I am continuing to eat differently and treat my body better. For the past few years, since becoming pregnant and then a mother- I have had this nagging feeling like I need to take better care of myself. That I need to put myself first, at least as much as I can with all the different hats I wear.
I realized that I have a little issue with lack of control.
Just a teeny little one.
Don’t we all, though? We get upset when our child is sick, because we cannot heal him. We get upset when our car breaks down, because now it is out of our hands and in the hands of a mechanic. We get frustrated when someone cuts us off on the highway because we were minding our own business and following the rules, darn it! It is out of our control.
Out of my control that every day I can try as hard as I want to dictate what is going to happen to myself and my family but some time things are just not up to me….
But I realized, I can control what I eat. I can control what food and drink items I bring into the house. I can control how I look at food and how I treat my body. Those things ARE in my control. In fact, no one else dictates what goes in my mouth. As much as I like to blame outside influences- like advertising, or bad work days, the treats in the teachers’ lounge, or hormonal inbalance (that happens EVERY darn month!)- in reality- I still am the one in charge of my diet. And when I say diet, I do not mean diet like counting calories, points, following a set plan- I mean what foods and drink I consume.
It feels good.
It feels good to take care of myself in this way. To allow my light to shine. To realize that even though Evan, Todd, and my students come first so many times during the course of my day- if I am caring for my body by eating well, then I am actually able to take better care of the people around me. And in turn, I feel more confident about letting my light shine.
After the detox, Heather, the creator of Smart Sexy Living
wrote me an email asking if she could quote me for a testimonial. She quoted one of my emails to her as saying, “A family friend told me that I needed to quit my job and become a model.”
When I received this email from Heather, I balked at the idea of her using that quote. I felt embarrassed and felt as though I was bragging. She responded to my email saying she would gladly take out the sentence- but she then said, “not to be woo-wooy- but let your light shine!” and she included this quote:
“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.“
It really resounded with me. Why are we so afraid to share our successes? To let our beauty shine through for everyone to see? We encourage our children to be who they want to be, to be proud of what makes them exceptional, what makes them beautiful inside and out. Why are we afraid of it? What kind of an example are we giving our children if we hide behind our beauty and our unique abilities?
By cutting out gluten, refined sugars, and processed foods (I’m not perfect, but this is what I am trying, anyway)- I am letting my light shine. And it’s about time.
How can you let your light shine?
You know you are awesome, don’t hide it!