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.
Evan and our family has been a part of a research study out of the University of Louisville since he was 18 months old. I’ve talked about it here, here, and here.
A part of that study is a monthly phone conversation that I had with Dr. Carolyn Mervis, the principal investigator in the study. I had multiple forms to fill out monthly, to update Dr. Mervis on Evan’s speech and language process. Some months I looked forward to the call, because I was excited to share the new words Evan was using. Some months I waited until the very last minute to do the forms because I knew he hadn’t made much progress that month, or maybe our lives were crazy that month and I hadn’t noticed any big changes. (ie: Melody’s birth, one of my miscarriages, etc)
Some items would stay unmarked for months, sometimes years, “Does your child use his/her index finger to show INTEREST in something, not just to ask for something?”
Nope. Still doesn’t really do that.
But there was one item that puzzled me month after month.
The item said, ” When your child is playing with a toy, does he/she look at you and then back at the toy?”
I remember admitting to Dr. Mervis one month, that I didn’t quite know what that looked like. I’ll never forget what she said. “You’ll know it when you see it,”
Ok sure, I’ll just figure it out on my own.
Well, until a few months ago, I don’t think I really knew, but I do now.
Look at me, Mama!
I know now because Melody does it, all day, every day. She crawls around playing with toys, standing up, cruising, playing again, all the while, she looks to see if I am paying attention.
So that is what she meant.
Evan looks at me. We cuddle together, we sing, we play rough house games and we check in all during those times. But “social referencing,” or checking in with your play partner, loved one, etc while interacting…it just doesn’t come as naturally to him. He does it more now, especially when in a situation where he is not familiar. He might look to me, because he needs comfort or security.
Melody does it because she is a typically developing 9 month old who wants to make sure I am paying attention. Just because.
Sometimes this feels amazing, exhilarating almost. To know that she is “on track,” that she wants to make sure I am there. Something we still “work on” with Evan. We have to be intentional about encouraging referencing and the motivation behind it. To know that it won’t be so hard with Melody. (not that she won’t have her own set of hard)
Sometimes I feel a pit in my stomach. I feel guilty that I am excited. I realize how incredibly hard Evan works for all his milestones.
Melody is standing on her own, and almost walking at nine months.
Evan walked at 25 months. I can remember it like it was yesterday. It was so exciting.
I know….they are different people. And not just because of their chromosomal makeup. They are different genders, different personality types, etc. I shouldn’t compare.
But having a child with special needs born first, it is hard not to.
I remember being pregnant with Melody and talking with other friends who had their child with Williams Syndrome first, and than a second child without special needs. They said it would be so different. Not bad, not good, not better. Just different.
I couldn’t agree more.
But I will say this, having the two of them together, is waybetter.
There are some odd things we do as parents of littles with special needs. I guess they aren’t odd to us, but they might be to others.
Imagine big heaving breaths with this face. Repeat.
One of those things that I find myself doing lately is celebrating the typical. Specifically, celebrating when my son (who is 3.5 and has Williams Syndrome) has an all out, house shaking tantrum. Now let me preface this by saying, I do not “enjoy” his tantrums. I get just as frustrated as the next mama who doesn’t like to a. see her child cry, and b. wants him to get his act together and realize the world is not ending because he is putting pants on.
I celebrate that he is being a three year old. That he is expressing his frustration over whatever is bugging him at that moment. Lately it has been wearing clothing. He acts as though you are putting acid covered knives on him when you get him dressed. Have you seen this? It is pretty darn accurate. Albeit slightly creepy but so accurate nonetheless.
Another tantrum he likes to throw is The-I-Want-Dinner/Breakfast/Snack-Now tantrum. I get home from work, and he meets me at the playroom door and his arms go up lovingly and the first thing he says is, “Dinner?” (at 4:45 pm mind you…..) And then sometimes for the next 45 minutes as I try to unpack from the day, and get dinner ready, he will climb into his chair in the dining room and whine and cry for dinner that is taking way too long for his liking.
Yes, my shoulders might tense up in frustration because I wish he would just understand that things take time, and that mommy can’t have everything he wants for him immediately…
I realize, my son is doing something that most toddler-preschoolers do. Not because he has a genetic condition. Not because he can’t express himself otherwise due to language delays.
Just because he is young, and because that is what they do from time to time.
And sometimes, it is nice to experience things that happen just because. They do not happen because of a label, a diagnosis, or a delay.
I hate pants.
I better go prepare myself, time to get him dressed. Wish me luck.
“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.
Well, we’re married….the engagement happened a good 7 years ago. But it will make sense shortly.
Sorry friends, the whole plan to write one post a week sort of evaporated a long time ago, didn’t it?
But I know you understand. This working mom thing, is no joke. As I have mentioned before..here and here.
Just too busy doing things like this.
But that being said, things are going really really really well.
Evan is loving school. And I think school is loving Evan. (at least that is what they want us to believe to keep us quiet…. 🙂 ) just kidding….sort of.
Seriously, he is just one of those kids that NEEDS school. He thrives on it. Thrives on the interaction, the structure, the constant activity. Lordy be, the constant need for activity.
“Does he nap?”
“He must be EXHAUSTED when he gets home from school the way he goes goes goes all day!”
Yup. If I had a nickel for every time I heard one of those… Nope, hasn’t napped on a regular basis since he was about two. And when he gets home from school, he is still raring to go. In a more overstimulated-body-is-tired-but-mind-wants-to-keep-moving kind of a way.
But his teachers gethim. I was so worried that they wouldn’t. That with the other kids, the two different classrooms, that it would be hard for Evan. Well Pshaw says Evan.
As usual Mom, I got this!
We had some worries in late August about Evan’s engagement with his peers and the adults in his life. If I am being honest, I was worried that the bubbly, overly social side that we had become quite fond of and accustomed to- was staring to dissipate. During the summer, his attention span had become much shorter, and his interest in objects had increased while his interest in socializing and engaging with folks seemed to have lost its luster.
I don’t think we even realized it was happening until we received some key advice from a very well regarded doctor who is one of the few experts in Williams Syndrome. She noticed it right away and encouraged us to go in a different direction with Evan, instead of worrying about any academics or even the fine motor school prep stuff- pour all our efforts into making Evan remember how rewarding it can be to engage with his peers and family.
My heart was SO full.
I remember feeling kind of lost, like maybe this was just our new reality with Evan. That it would have to be okay if he didn’t want to play with me or even just be with me without being “taught” to do so.
I needed to slow my roll, as my very dear friend Talia would say. Because it is now November, and I barely even think about it anymore. Evan will bring toys to me, just because. JUST BECAUSE. I mean….it’s hard to explain why that is so huge unless you know what it feels like to never have your child do that. He only would bring me things because he needed something or because he wanted me to manipulate the toy in some way. But now he just wants to share. He calls for me from the playroom. From his crib. From the front door when I leave in the morning. He asks for me when I am not here. These are all things he was not doing this summer. He will come over and say “Hi mommy!” and look at me with those eyes and I just melt.
This morning in church, he sat to my left in his stroller. Munching on some veggie straws. I do long for the day when we can have him sit in one of the chairs with us but for now, if we want to participate in any part of the service where Evan is there, the stroller it is. Two of his favorite songs opened up the service.
“Be Thou My Vision” and “How Great is our God.” I stayed seated while the congregation stood and sang in his direction because I wanted to see if he would sing with me. Instead, he stared at me with those eyes. His eyes twinkled with joy. He would squint every few lines and giggle at the memory of a song we sang when he was just an infant. But for almost every last word of each song, he locked right on my eyes and wouldn’t let go. I almost broke down in tears because I was so happy. He wasn’t watching my mouth because he liked the sounds (which he known to do). He was looking at his mama.
Things that can’t exactly be taught. But they can be fostered. And foster, gosh darn it, we will continue to do. Because it is what keeps my tank full. And hopefully, Evan’s as well.
Just another mom of a toddler, changing diapers, making nuggets, pushing swings, reading books, snuggling, singing, navigating tantrums, giggling, and collapsing into bed.
Sometimes I can do just that. (well that and go to work….but that is for another post)
Unfortunately, the majority of the time, that is not the path paved for me.
Lately I find myself being his case manager. His occupational therapist. His speech therapist. His medical manager. His nutritionist. Evan’s project manager, that’s me. I just spent the better part of an hour on the phone with our insurance company trying to fix a claim that I have called about 4 other times. Great way to spend my morning off. Sigh…..
I read a post the other day on the Williams Syndrome Support board from a mom who was asking if other parents felt the same way,if it is just easier to wear all the therapist hats ourselves. To stop relying on professionals to direct our way, and instead take things into our own hands because who else will? I totally hear her plight, and I can see where she is coming from. But it also makes me sad.
Because I just want to be a mom. Plain and simple.
Trying to be “just a mom”
I can remember talking to Evan’s early intervention speech therapist, Miss Becky, (who we miss dearly) after one of his sessions back in the spring. I was asking her numerous questions of how we should be communicating with Evan, to better foster his language. I was probably beating myself up a little for not doing all the “homework” she assigned us from the previous session. She interrupted me and said, “Erin, you have to just be the mom, sometimes. It’s okay. You shouldn’t have to be the the therapist for him, let us do that.”
Wow. That was a little wake up call. Sometimes I feel like all my interactions with my son are calculated. What toy can I choose that will get the most bang for our buck? Will it help his fine motor pincer grasp? Will it foster the need to communicate with me because he will need assistance? Does it provide opportunity for turn taking? Have I put away all the distracting wind up toys and musical things that would pull his attention? Is the dog in the other room so she doesn’t bother us?
And then sometimes I just lie down next to him in the playroom and I pretend to sleep and making funny snoring sounds.
Honestly, that is one of my favorite things to do right now.
Because he crawls over to me, lays his head on my chest and says, “Mommy’s sleeping,” (sounds like Mommy’s sweeping) and then he makes the same funny snoring sound I am. I guess that is calculated on my part too, because I know he will snuggle with me and I do not have to think about anything else but being his mom for those few minutes.
And then I will “wake up” and make sure he is not w sitting, wait for him to initiate communication for another toy and start project managing all over again.
The irony is not lost on me. My son has special needs and I have been a special education teacher since 2000. (with a two year break in there after having Evan) I also have my certification to be a Learning Disabilities Teacher Consultant. (the learning consultant on a child study team)
I taught for 11 years before having my son (now three years old) and all of those year were spent with elementary school age children with varying degrees of need. Whether I wanted to or not, I gained a truckload of patience that I didn’t have prior to being a teacher. I learned how to see the talents in a child, rather than focus on the deficits. I learned how to pick my battles with oppositional students. I discovered that a huge part of being an educator is the relationships you develop with the parents of your students. It has never been my strong point, contacting parents and having difficult conversations about their children. I tend to avoid confrontation and I have never felt confident making those difficult phone calls. Even when I know my points are valid.
But I never imagined how different I would feel when I sat down this past spring to write an IEP (Individualized Education Plan) for one of the students I teach. I hadn’t written one since the months before I delivered Evan. I typed up a sentence about this particular student, one that described his dependence on his teachers and one of his weaknesses. After my fingers clicked away, entering the sentence into the system, I found myself feeling uncomfortable. I reread the sentence approximately five times. I realized that I was trying to imagine what I would feel like if Evan had that sentence written in his IEP. Would I appreciate the wording? Would I agree with the observation? Is it necessary?? Here I was wearing my teacher hat, but my mama bear hat was sewn into the brim and there was no stopping her. And this same feeling occurred with each IEP I wrote. I thought longer about each objective. I scrutinized each comment. Was I being thorough? Is the objective measurable and clear?
I also found myself feeling more guilty when I would become frustrated with one of my students. After giving the same direction numerous times, and day after day needing to give the same reminders, I found myself becoming short and visibly agitated with one of my students. This particular student is not easily ruffled and it didn’t seem to phase him one bit. Which of course led me to feel more guilt. I can remember sitting at my desk eating my lunch and thinking, “Erin, that child is doing the best he can with what he has.” and my next thought was, “God, please let Evan’s teachers realize that about him.”
“Please let him try his best, and let his best be enough for his teachers.”
One of those moments where you feel like Oprah should appear in the doorway saying, there it is! Your AHA moment!
I need to listen to that little voice inside me that prayed that Evan’s best would be enough for his teachers at school. I need to accept Evan’s best efforts as well. Not to say that I should not have high expectations for him and help him to strive to rise to the occasion. But when he does, when he is trying his very best to use all he has to accomplish something and it is just not working out the way it is supposed to….I need to realize that it is enough. His effort is enough. HE is enough. The word combinations he is making today is enough. The attention span that causes him to flit from one activity to the next- it is enough. The sensitive hearing that has increased in the past month, it is enough.
I just don’t want him to lose his spark.
zest for everything
Please let his teachers fuel the spark. Inspire him to try his best.
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 brutifullife. 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!
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.
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?