Balloons for Carter

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ImageToday, as a family, we’re releasing balloons and celebrating the too short life of a sweet little boy named Carter. Carter is a 3 year old with Williams Syndrome who became an angel last week very suddenly and unexpectedly. We didn’t know Carter in our real lives. I am Facebook friends with his mom, Airelle, and we connected through a closed support group for parents and caregivers of individuals with WS.

I’ve been struggling with how to share this because it feels disingenuous to share the grief of someone I am not close to. When I joined Facebook years ago I never intended to be “friends” with people I didn’t know. It was a way of staying connected with family and friends, sharing our daily moments to defy the distance created by life or land. And it’s been wonderful for that. I just love being able to take a peek when I’m wondering what our niece and nephews are up to over in England. I love sharing my children, and cakes and what’s for dinner. I love that I get glimpses into the lives of friends from my past.

But when Norah was diagnosed with WS, social networking changed for me. A fellow local WS mom who was generously offering support by phone invited me to a closed support group on Facebook. And  2 years later I find my friends list is almost half made up of people I’ve never met. But we have a common thread and many of them feel like family. I see Norah in the faces of so many kids whose photos grace my newsfeed. When I watch videos their movements and sounds are so familiar.  

I find myself regularly surprised at the level of emotion that rises to the surface when someone in our WS community shares a heartache or a triumph. A little girl who’s been struggling to walk takes her first steps and I rejoice, get chill bumps. A little girl goes home after a very scary and complicated recovery from open heart surgery, a lump in my throat, a tear, a shudder of relief. A child is lost, sadness, nausea, fog.  I cannot fathom it. As my very wise brother-in-law says, “don’t try”.

So, I will not try to understand Airelle’s grief. But today, as a family, we give thought to her son, Carter. We each relate in our own way. Norah smiles at Carter’s picture, scribbles with some markers on a note to him, enjoys the balloons. Charlie tries to eat one. I choose a picture of Carter and Airelle together for my note because I am relating as a mom. Stu as a father.  We let our balloons go and watch them get smaller as they drift towards the clouds. We get on with our day with a whisper of sadness for Carter’s loss following us throughout. It is our luxury to get frustrated when both kids refuse to nap. To get annoyed by an achy knee. To be fed up with picking up toys and wiping hineys. It is our luxury. I wish it were Airelle’s too.

 

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Over Easy

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Norah and I have been sharing one of my favorite breakfasts this week. Buttered toast topped with an over easy egg, salt and pepper. I like to cut into the yolk and as it starts to seep out turn it over so all the stickiness is absorbed into the toast. It brings me back to my own childhood in a flash when I cut Norah’s toast and egg into little bite-sized squares. My mom did that for me and I have no clue how she got the egg to stay so neatly on the toast as she was cutting it. I’m sure it’s an art much like cooking an egg over easy. You have to get the pan hot enough that the egg doesn’t spread too thin, but too hot and the edges get crispy. You want soft with an oozy yolk. And maybe it’s just me but I hate to have any uncooked whites. 

Stu made me his favorite childhood version of this beautiful marriage of toast and yolks when we were getting to know one another. Soldiers and eggs. Buttered toast cut into strips (soldiers) and a soft boiled egg in a ceramic egg cup. Cut the top off of the egg and you can dip the soldiers into the exposed yolk. So much fun! I just made the comparison between these two breakfasts to Stu and he said “they’re similar” but his version is “classier” (can you hear the English accent?). No doubt. What presentation.

And yet I prefer the slapped on a plate version that I grew up with. I remember the first time Stu made an egg sandwich breakfast in bed for me. I took the first big bite and yolk squirted out. What? A sandwich is no place for an over easy egg! And the bed is REALLY no place for an over easy egg. Egg sandwiches are meant to be over hard, bread soft with Duke’s mayonnaise.

I like how invested I feel about my egg breakfast. It’s rooted in memories of shared breakfasts past. It’s really where my inherited love of food all began. I vividly remember those over easy eggs on toast. Their rich stickiness and how cool I felt being like mommy. Nothing was more delicious than enjoying what she enjoyed. I had studied her hands cracking and cooking the egg, cutting each bite, so nonchalant. It was just breakfast after all.

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Pressure’s On

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DSC_0080Norah has hypertension. That’s right, my toddler has high blood pressure. Williams Syndrome is caused by a deletion of genetic material on chromosome 7. Included in the missing genetic material is a gene for elastin. Without that gene Norah’s blood vessels are rigid and small. It is one of the ways WS has affected her. How does that make our day different? Norah takes two blood pressure medications twice daily. They are compounded in a tasty syrup and she doesn’t even blink anymore. She just stops running for the two seconds it takes to squirt the syringes into her mouth and moves on. We also monitor her blood pressure at home. DSC_0081This is not an everyday thing, just occasionally to keep an eye on it. And she see’s a pediatric nephrologist (kidney doc) and has blood drawn every three months to monitor kidney function and electrolytes. Norah has ultrasounds of her kidneys every 6 months to assure they are both growing and to look for calcium deposits. Why look for kidney stones on a 2-year-old? Well, that’s a post for another day.

Cause. That’s why!

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Everyone has a cause. I always feel sheepish about asking people to support my cause. And yet I have no problem soaking up your time by posting about what we’re having for dinner or (in related news) what color my kid’s poo is today.

May is Williams Syndrome Awareness month. Unless this is the very first of my posts you’ve read you know why this cause is so important to me. Our now 2-year-old daughter, Norah, was diagnosed with Williams Syndrome (WS) when she was 5 weeks old. It was one of those moments where your entire life course changes with such suddenness you find yourself whiplashed, confused, in shock. Truly, my path as a mother was redefined in that moment, even as it had just begun.

Part of my journey as a mother includes talking about Norah’s rare genetic condition. Why? Because people are going to notice that she’s different. And I believe if they know why and feel free to ask questions that she will meet with more acceptance than not.

I have been there. I have encountered people in passing who have special needs. I get nervous. Don’t know where to look, what to say. It throws me off kilter because they don’t move or communicate in ways that feel familiar and safe. I am ashamed that I need to shuffle off to avoid the discomfort. Norah is my motivation for overcoming this unattractive piece of myself.

We start asking our children to notice differences at a very young age. Remember the Sesame Street sketch, “Which one of these things is not like the others?”. On the Baby Channel it’s “What’s Different?”. But then one day in the checkout line at Target your child notices something different about a person and loudly points it out to you. And red-faced you tell your child that isn’t nice, or we don’t say that. This is an intricacy of parenting I have yet to face. And I do not look forward to it. It’s so complicated. We want our kids to be curious, notice things, ask questions. Should we shush them over the awkward ones? I don’t know the answer. Maybe we can figure it out together.

We recently had dinner with a friend and her two kids. Norah was in their playroom when some electronic toy sounded off. Norah stopped. Her hands covered her ears. And there she stood for a couple of minutes, long after the noise was quiet. This move is familiar to us. Norah does that ALL THE TIME. Hyperacusis is one of the ways that WS has affected Norah. But this reaction is not exclusive to noise related discomfort for her. If she slams her fingers in a drawer, hands on ears. If she bumps her head, hands on ears. If she is scolded, hands on ears. It is the equivalent for her of rubbing a bumped shin. It’s the lingering there that looks different, though. She needs time to process the discomfort. She needs to protect herself from further pain. And so when this happened in our friend’s playroom her little boy noticed that it was different and asked, “why is she holding her ears?”. We talked about noises bothering her and moved on. Later Stu would witness both of those children thoughtfully asking if a toy was too noisy for Norah. In fact, Stu and I were touched by how our friend’s daughter intuitively played at Norah’s pace.

I want to be more like that little girl. I want to be unafraid to step outside of my comfortable pace. I want to be like her brother. I want to be unafraid to ask questions. I want for people to notice how Norah is different and I want them to ask about it. Norah is challenged daily to move at a pace that’s uncomfortable for her. Yours. Mine. She works incredibly hard to keep up. And she does it with way more enthusiasm than resistance. I want to be more like Norah. I want to be unafraid to face big obstacles.

I’m never embarrassed by my daughter. I am crazy proud of her. The reality of raising a special needs child is that heartache comes in waves. There will certainly be times that I’m more tender than others. When I might not feel like answering those questions that I’m begging for now. That is my obstacle. I am trying to face it as bravely as my beautiful daughter faces hers. You cannot protect me from the heartache by not asking.

This is my cause. May is Williams Syndrome Awareness month but I like to think of it as “Starting a Conversation About How Williams Syndrome Makes My Child Different Month”. Catchy, I know.

You can read a bit more about Norah and how the Williams Syndrome Association has already enriched our lives here.

Eat, Sleep, Love (sleep optional)

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Lots of growing up going on in the Burden house this week. Charlie’s well on his way to longer naps, an actual schedule and self-soothing. All of this after not even a full week of “nap training”. He even went 6 hours between feeds last night. Unfortunately he talked for two of those hours, needed two diaper changes, one wardrobe and bedding change and lots of patting. So, no extra sleep was had by anyone. Norah’s been sleeping without her paci since Saturday with no major disruption. I was so proud of her this morning when she stumbled across Charlie’s paci where it lay on the couch. She laid her little head next to it, chatted a bit and looked longingly. She picked it up and put it to the mouth of the butterfly toy that lay next to it. But she never put the paci in her mouth. She’s such a good little girl.
Charlie had his first taste of rice cereal this weekend and has quickly moved up to two meals a day. Watch Charlie eating here (and excuse any background fussing).Yesterday he added in some lovely “mmmmm” sounds while he was eating. This is quite a sight for Stu and I after Norah’s introduction to solids which took months. Moments like this bring up a lot of emotions. We get a full grasp of how challenging things can be for Bug. It gives me a lump in my throat to understand how determined she is. How it is all taken in stride. I am intensely proud.

Feeding herself breakfast, "look ma! no eyes.", all done

Feeding herself breakfast, “look ma! no eyes.”, all done


I think we take many things in stride as parents because of Norah. All those hours spent trying to feed her, looking for the perfect texture, discovering preferences only to watch them change the next day….it’s just what we did. And I have fond memories of sitting face to face with Norah for the hours each day it took to get through meals. But that’s because she was first. Her agenda was the only one that mattered. Charlie’s lot is different. And now Norah’s is too. But the timing is perfect. So, this morning, with two mouths to feed, I gave Norah her cream of wheat and a spoon and focused on Charlie. Her spoon was upside down after her second bite. Cream of wheat got EVERYWHERE. But she did it! She fed herself the whole bowl and at the end she was spackled (as her Nana would say) with cream of wheat and sweet success.
Norah really is growing into her independence since Charlie was born. And sweet Charlie “Bear” is really finding his niche in our family. His love for each of us is written in delight all over his face. He brings up that same lump of pride for me. It’s one of the most joyful parts of motherhood. It’s rooted in the bittersweet process of watching your child grow up. I can tell you first hand that there is NO correlation between where they fall on the developmental charts and the size of that lump.
For some fun. Norah loves these Pingu videos that her Poppy and DeDe introduced her to. And this one hits close to home for me so it made us both giggle. Enjoy!

Quick Edit

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I think in trying to share part of our parenting journey with a speech delayed child I may have accidentally taken credit for Norah’s accomplishments. But we know first hand that you cannot make a child do anything they are either unable or unwilling to do. We are trying to give Norah what she needs to do HER best. She’s the one doing it.

Here’s Talking to You, Kid

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Last November as I stood in line to vote I overheard a mom behind me interacting with her child. I was jealous at how natural it all seemed because it could have been a video for the Hanen program. That mom would later tell me that she had no training in speech pathology….that she simply loved talking to her child. It’s a beautiful thing to witness in a society where we’re often too busy to truly engage our children on what THEY find interesting. But that deliberate, conversational interaction is what Stu and I had been attempting at home in an effort to further Norah’s language development. It did not feel natural. Did I not like talking to my child? Of course I did…do. It was in telling my mom this story that the difference peered out at me. The child was reacting, prompting, participating. Speech delayed children may not yet know how to further an interaction by pointing or even looking up. Having a conversation with someone who doesn’t appear interested is difficult. And speech therapy for us was just that. Having nearly constant unrequited conversations. When I lamented to Dr. Mervis (read about her research here) that Norah was seldom interested in what I was saying she wisely reminded me that Norah did not yet know how to show me she was interested. We can truly see the difference now that Charlie is here. He begs you with a smile and a coo to sing your song again or to describe the kitchen in vivid detail or to read him the phone book even….just talk. But the children who need that kind of repetition don’t naturally beg for it. Being raw and honest I’ll admit that I found it exhausting most days to keep up this level of chit chat. Naming things, repeating, repeating, long pauses where a response might go, emphasizing sounds, making up songs, holding objects near my mouth to direct attention, noticing what Norah finds interesting and talking about that, narrating everything. There were hours and days that I could not keep it up, where the reciprocal silence got me so down that I let it take over. But for the most part this has become part of our everyday. And exciting things are beginning to emerge. It started with a reach. Then a reach and some eye contact. Then some verbalizations. Then handing us objects to turn on or open. And I nearly cried right there the day Norah, across a crowded and busy rec room, held up a plastic banana for me to see and verbalized something that I was too far away to hear. Now she’s starting to draw our attention to things just to share that she likes them. That’s right! JUST for conversation. I keep wondering why a gesture so seemingly small gets my emotions overflowing but now that I’ve typed it all out the answer is apparent.
Here’s a video of Norah showing off some fine motor and communication skills this morning. I know that it doesn’t seem all that exciting. But if you’re immersed in Norah’s care and see how hard she tries and if you love her as thoroughly as I know many of you do then I know you’ll be excited for her amazing progress.