Parenting Perspectives Column Published in The Forum on 8.07.12

Mom needs to remain ever vigilant

It’s no secret that we parents all worry about our children’s safety.

We buckle their seatbelts, buy them bicycle helmets, slather on sunscreen – some of us even locate children with secret GPS on their mobile devices. Lucky me, I’m definitely not there yet, but I don’t and won’t put it past me. I could most definitely see myself being that mom.

It’s interesting though how my focus for so long was on health, meeting the requests of many doctors and specialists, constant checkups, and an abundance of pull ups. I have a Wiki list of all the doctors and specialists he sees, the orthopedic specialists, the endocrinologists, the urologists, the lab techs that know Carter by name, the appointments we have in the lobby in Maple Grove because my son throws a tantrum that no one wants to see when he has to go “back der.” Also on that list are his three different therapists, his teachers at pre-school, the right person to call to set up an appointment when you really need to get in.

I check that list when I forget because it’s far more often than you might think, and it’s way too much to remember. You should see the nurses’ faces when you can tell them test result numbers that they have to look back on the old system just to find and verify. But I know – because I recorded it.

So momentarily, I feel like I have it all figured out, and for five minutes I can relax.

Wrong. Just when all is healthy in the land of Carter, we discover that with walking and jumping there are many dangers that mosey and hop his way, too. Don’t get me wrong, I knew this was coming; he’s been walking now for more than two years. But never until now had he taken the initiative to open our ever-so-squeaky door to go outside and play – by himself.

There is a reason I don’t fix that squeaky door, folks.

He has very little patience to wait for mom anymore. He is busy and has many rocks to sort in the sandbox. My interrupting this is not acceptable. So I try my best to catch that door, to veer him clear of the grill and the ever so captivating fires. I stop him from jumping on the bed since he doesn’t look where he’s jumping, I get the knives put away into the sink directly after I use them, and I keep him close to me at all times while outside.

Among our biggest safety challenges is the great outdoors, his favorite place to be. We live in the small town of Downer, Minn. There, I’m not too worried about the sun or the bugs or even the wild animals, but what I am worried about is the infamous “Downer Road.” For many this is the road to the lakes. It also happens to be our front yard.

I probably wouldn’t mind if people sped through the town quite so much if he didn’t have an urge to literally ask me if he can “Go play in street, momma?” He’s not joking; he would truly love to go sit on the street and play with the rocks on the road. I’m not sure why he asks, we’ve obviously never let him play on the road, but for two minutes if I have to run inside for something – he always has to come with me. It leaves me questioning, do I really need to go inside? Can I wait a few more minutes to go to the bathroom? Clearly, I cannot start supper – as I can’t check on it.

Well, I can wait and I can bring him with me, kicking and screaming that he is not yet done playing because we just got out there. He doesn’t yet understand we’ll be right back. But, he’s getting there.

We’d like to build a fence to keep our precious little boy in the yard, but its massive size would require a second mortgage to pay for it. Did you know there are no grants or special foundations for fences? I know because I’ve searched. So instead I remain diligent.

Do me a favor and take it down a notch and enjoy your drive through Downer. It’s a beautiful little neck of the woods to take in, and you could even help this mom with one more motherhood challenge.

it’s been a bit bumpy

To say it’s been a rough week, would be an accurate statement.

A weekend annoying fender bender, a pretty mind-intense training session on Monday, ran to therapy 15 minutes one-way on the wrong day, woke up to a flat tire, walked back home with Carter until it could be changed (no, I don’t change tires), drove on my donut, forgot to tell Carter’s teacher he wasn’t coming to school, had tire repaired, cancelled Hippatherapy for the day because *something* had to go, finally got to go to work, went home thinking – at least Carter isn’t sick or anything so I won’t miss work tomorrow, felt exhausted and went to bed without so much as texting Jillian Michaels to let her know she would not be playing in my Blue-Ray player that evening, woke up to the sound of Carter spewing in his bed (I know, awesome right?), held my 4  yr-old boy over the toilet until every last drop of the ”ickies” was gone, rocked him until he was feeling better, which was shockingly only about an hour later, he seemed to be himself so I let him play outside while I was able to do some research work from home, of course next to him outside – from my ipad. Managed to forget to tell his therapist that he was not at daycare and could not be seen, so she was knocking to no avail. Forgot to put the garbage out so I had to flag him down just as he drove past my house. (Why can I be SO on top of things one week and the next feel like I literally forgot it all?!)  It was at this time that we learned how much the fender bender would cost to fix from the very friendly American Family Insurance man, still haven’t received the bill for our water softener that had to be installed last week and oh, did I mention we need a fence more than ever? Our road is so dangerous and my little boy with WS literally gestures to the road with one arm and soberly questions, “Momma…. go play in the road?”

If only our yard wasn’t so big.

If only the traffic truly would slow down.

If only the patrol officers could patrol in Downer more.

If only we didn’t live on a direct path to the lakes.

If only the busy traffic times wasn’t pretty much when we are home on the weekends.

If only my monkey didn’t love all the tractors and trucks that fly by so much.

If only he didn’t love rocks – which are found on the road. 

If only he didn’t ask me to go “play” in the road.

If only then – would I not dream of a fence so much. At this springs beginning, I did not think of it to be as important as I do now. He is getting older and wants to explore more and the safety side of WS has become my main concern over constantly researching health concerns. Now our biggest goal pretty much is, just don’t leave his side. Don’t stop watching him for even a minute. It takes him less than 15 seconds to get from the sandbox to the road. I park it right next to him and every time I have to run in the house – even to use the restroom, grab something to drink, grab a coat, stir dinner – whatever, he has to come with. Try explaining to a 4 yr-old in love with the sandbox, why he has to come inside. Kicking and screaming, just for a quick bathroom break? I’ll hold it I guess, until it’s time to come in. Or dinner can just be microwaved, because I can’t run in and out – unless of course dad is home to help.

I’m not writing to complain today – more as, just sharing about how we’re doing right now. We’re optimistic and feel extemely blessed to have the challenges that we have and not something much worse. We are blessed to have incredible people in our lives, family and friends that could never be repalced. We are blessed to have our little Carter in our lives, although safety is our biggest concern for him right now, we are grateful to have the job of looking after him. We wouldn’t trade it for any job in the world, please do not mistake that. He is our most treasured gift, we are grateful everyday, despite somes bumps. We will travel the road with bumps or smooth pavement, with smiles on our faces.

Parenting Perspectives column published in The Forum of Fargo-Moorhead on 5.15.12

So your child has special needs. You’ve gone through steps to grieve it, accept it, educate yourself and move forward.

But part of moving forward is making the decision of whether you want to become an advocate for your child’s cause. You have made this decision with your actions, like it or not. Either you are advocating or you are not.

But maybe you aren’t ready, or maybe you just need a little encouragement. Maybe there is a surplus of maybes, but I still ask you to let that encouragement be your child. On the fence? Consider exploring these scenarios:

I want to help, but I don’t even know where to begin.

If you want to advocate, you must first do some research on your own and decide where your skills are best suited. Discover a local or national chapter for the cause, and learn everything you can about it. Get involved. Find out what they need, and decide if the mission of the organization is something you believe in, and if it’s something you can give your time and talents to. We all have talent!

I want to help, but I don’t have enough time.

Like any parent, we are all busy, and you may have less support than others, but we can all find time. Put some time on your calendar and choose to make time to advocate.

If you are a working parent, perhaps you take 20 minutes during your lunch hour to make some calls or send some emails or even run an errand for the cause.

I want to help, but there are already plenty of people advocating for this cause. They don’t need me.

This might sound true, but think of how expensive research and change really is. Think of what it costs to keep a nonprofit functioning.

They have electricity bills, marketing campaigns and payroll, in addition to major groundbreaking research and federal lobbying to fund.

I want to help, but I don’t really have any fundraising or event planning experience.

If your child has a rare disability, like my 4-year-old son, Carter, with Williams syndrome, you should know it’s not just about raising money – it’s also about awareness.

It might be rare, but it happens – someone close to a family recognizes the signs of a rare syndrome because they were educated by a local awareness initiative.

You might not be able to provide a check for $5,000, but awareness, well, anyone can spread awareness. Yes, even you! You just might save a life.

I want to help, but I don’t want to pressure my friends and family to get involved.

I get that. It’s not easy asking things of others – especially if it’s something you aren’t used to doing, well, ever. But, remember you aren’t asking for you, you are asking for your child. What wouldn’t you do for your child?

And you can’t expect others to advocate for your child if you aren’t willing to either. It has to start somewhere. Plant the seed.

I want to help, but I have enough on my plate.

There is no shame in knowing when you have too much going on already. After all, we’ve all been there. Just decide when you want to help, or save up some money to help give a yearly donation to the cause. Or evaluate if there is something you can surrender to advocate. It is a rewarding effort you likely won’t regret.

Just a week ago, I helped in the coordination of the local FM Walk for Williams Syndrome Awareness. We raised almost $10,000 and had 170 walkers come out for the event.

Two years ago, had you asked me if that would be possible, I probably would have said, “Not in Fargo, not in a million years!”

I unmistakably see things differently now thanks to Anne Nelson, another WS mom from Fargo. We did it!

I want to pass on to other parents of special needs children out there, it’s OK to procrastinate until you are ready, it’s OK to be scared, but once you are ready and you take that step, it is valuable on so many levels.

 Kerri Kava is the Newspapers in Education coordinator for The Forum. Her 4-year-old son, Carter, lives with Williams syndrome.

Let’s walk, tomorrow!

 

If you are Fargo-Moorhead local, come on out to the FM Walk for Williams Syndrome Awareness tomorrow at Lindenwood Park! You can register the day of, if you have not done so yet. Registration is $25 per person and $15 for a T-shirt. Or $60 for a family of 4. After the walk a picnic lunch and music by Mark Proulx will be provided. The event will be emcee’d by KFGO’s Mike McFeely!

Address: 1701 5th S t South – Fargo

Time: Registration begins at 10 a.m. | Walk begins at 11 a.m.

Questoins? Call 701.367.8645

-Get to know other WS individuals and family members

- Raise awareness for this unique cause

-Raise money for the Williams Syndrome Association

-Have some fun listening to great music

-Enjoy the day outside

See you at the park!

Kerri

Count your blessings… Easter 2012

I was blessed with an extra day off  with my little monkey this weekend. We took some time to go to Yunker Farm on Friday. Carter explored the museum, the park and the carousel. We enjoyed some lunch at Subway and headed to the grocery store to tackle our Easter Brunch recipes.

But before we left for all of that fun, we had a momma-Carter breakfast and dyed some Easter Eggs. Just like last year, he ended up using his little fingers to pull the eggs out of their dying baths and his fingers turned a beautiful Gumby shade of green.

Here are some pictures from our Easter Egg dying:

 

 

Parenting Perspectives Column published in The Forum of Fargo-Moorhead on 4.03.12

 

When words are music to my ears

 

We patiently, hopefully even gracefully, wait for our children to speak, to mutter those first words. The ever so anticipated answers to: “Tell me where it hurts,” “What would you like to eat,” and even as dreadful as it can be, “Are we there yet?”

The ability to speak and use words is one of those flairs in life that most of us take for granted. It was after I become a mother to my unique boy that I soon realized the ability to use words is not created equal for all. My son Carter has Williams syndrome (WS), a rare genetic disorder. Individuals who live with WS possess substantial speech delays. Carter fit this description, as if it were written precisely for him. Lack of speech, unmistakable texture difficulties whilst eating and failure to understand reason are part of the cumbersome speech challenges he so diligently works to triumph over.

 I bear in mind advice from other mom’s friends or mom magazines with solutions to all things children.  The key particularly being, “Can’t you just explain to him?” or “You should really just sit him down and ask him.” As my heart is shattering on the inside with the often unsaid, ‘Do you not know my son at all? Do you listen when I tell you he is in speech therapy? My son can’t tell me where it hurts, when he’s hungry, how his day was, if he has a sore throat or ear ache and he certainly can’t tell me that there is a rock between his sock and orthotic and it’s aching with every painstaking step. No, instead I hear a whining or crying little boy who is yearning to be understood, but doesn’t hold the ability to use his words yet. So instead, I watch for those signs and learn to speak a new language with him.

 Finally, I am blessed with the opportunity to interpret the words that are coming out of his mouth because they are definitely difficult to understand, a task I’ll take on any day over him not talking. Just recently, he seems to be making tremendous strides. He has taken his few words of, “More!,” “All done!” and “Go outside?” to combining around five words. Sometimes the words don’t make sense in context and he’ll blurt out “Of course, I will,” without even being asked a question, but it’s a step in the right direction and from what I have heard from other families with a WS child who is older, soon enough, he won’t stop talking.

 Research shows that individuals with WS can have a more sophisticated vocabulary than the average person because they love to talk more than you or I. They learn new words and practice them and hold on to them. When I heard my 4-year old little boy say his first word about a year and a half ago, “Elmo,” my husband and I both had tears of joy.  We saw him commence such effort to speak, to finally be heard and to finally be “gotten.” Since he was about 6 months old, speech therapists have been working to help him develop his speech skills.  It started with signing, “More, all done, I want,” but once he learned a word, we heard it all the time. Of course, his requests to watch, “Elmo” never did cease, but recently now he says, “Watch Elmo, pleeeeease, Momma?” He’ll even initiate a question and give himself the blessing to go ahead because that’s what he wants the answer to be, “Go see Grandma and Grandpa, okay? Okay! Bye!”  (As he runs down the hall to go out the door – willing us to follow him.)

 In addition to his growing vocabulary, like any child, he loves animals. But I think I can say without hesitation that his animal imitations are more adept than most adults, particularly the donkey and the horse. It just goes to show, that although you may be in a spot where you think your child will never speak, it’s liable to come only when they are ready. It might not be today, or tomorrow, or even next month, but when they are ready – and when you hear those sweet tender words, it will indisputably melt your heart too.

A special message from Carter Kava…

Hi folks,

My mom said I could guest author today, she’s getting her hair did at Mad Hatters Salon or something like that. She told me to just be my friendly self and lots of people will be excited to hear what I have to say. So here I am huntin and peckin at the keyboard! Are you impressed with my spelling so far? I knew you would be!

Anyway – when my momma told me I could guest author, I’ll admit it was in the midst of me say “Puhleeeeeze, Momma I gotta reach my $500 goal to support the Williams Syndrome Association.” She said something about how she has been trying, but needs my help because I’m an expert, cuz I have it myself. Yep, you heard me right, I’m one of those uber special individuals who missin just a few genes. I said genes, not jeans… I wear pants everywhere! But sometimes I show off my belly – as you can see in this picture. But don’t worry, it’s a really nice belly; I gots a belly button and everything.

So when Mom said, “Do you want to guest blog on the Who Needs Who blog?” I said my new favorite saying ever of, “Of course, I will!” Yes - apparently I say that a lot and even when I’m not asked any questions! Neato, huh?! Oh and I pretty much say anything that you say around me and I will even mimick farts – so watch out folks or perhaps I should have said, watch your words around me folks!

Moving on to things that smell and sound better – lets talk about the FM Walk for Williams Syndrome Awareness – coming up on Saturday, May 5th at Lindenwood Park – Fargo, ND.

Did you know that if you want a free t-shirt/meal voucher you need to register by Saturday, April 14th? I hate to say this, but that’s only 2 weeks away from right now… and who knows how long it will take me to figure out how to post this thing?! Oh wait, Mom’s back she’ll help me. So – just don’t you hesitate, register right now. If you want to give, but can’t make it to the walk, perhaps you would consider helping me reach my goal?

To view my personal goal page – click here.

To register for the walk – click here.

To learn more about WS – click here.

To download a registration brochure – click here.

I’m so glad you stopped by. Now my mom said that I could end with a joke. I heard this joke from my cousin Faith – who is a sweetie pie. It goes like this, “How do you wake up Lady Gaga?”

.

.

.

“You POKE ‘HER face!”

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.

.

Get it? Like “Poker Face” her song? Yea… I don’t get it either because I only listen to Elmo and the Backyardigans and that movie Rio!

Bye guys!

-Carter Kava

 

 

 

Riding On Angels Wings

We made our maiden voyage out to Felton, Minnesota tonight for Carter’s first ‘Riding On Angels Wings’ Hippatherapy session. Mr. Carter could barely eat his Subway munchies due to his horse/cow excitement. No there are no cows, (that we saw) at Riding On Angels Wings, but Carter looked for them during the short country drive. Evidence of our country drive was all over my white Subaru; note to self, car wash tomorrow and every Tuesday until Hippatherapy is over.

We walked in and Carter immediately heard a horse neigh. He replied with the best horse imitation in the whole Red River Valley. After a short visit and getting to know the therapists and Betty, the ROAW Director, we were ready to go meet, Blue – ironically a Black Horse. Don’t ask me what breed, I just know “horse.” But, I’m sure my husband could tell you. He is a certified farm boy.

We knew it was far too good to be true that he would remain happy throughout the entire therapy session, after all – it IS therapy. But he was a brave boy and kept repeating it, “Good job, Carter” quickly following with “All done!” He did well, despite a few tears. We sang songs like, “Puff the Magic Dragon” to ease the nerves. Not long later, it was time to take the final lap, letter by letter and verse by verse, Carter and Blue rounded the corner to where Mom and Dad were waiting for him. But before coming over for plentiful high-fives, he was able to say good-bye to Blue until next Monday. Blue gratefully received not just a hug, but a kiss on the snout. We left and talked about Blue the whole way home. Tonight after his bath and story, we told Carter how proud we were of him to be so strong and ride the big horse, Blue. He was so proud of himself and finished his night with “Now I Lay Me,” which he can say now all by himself. Here are a few pictures from his session tonight:

 

Even though you see a lot of sad faces, he did great and did enjoy a lot of it. I just didn’t manage to capture one of the smiles.

Good night.

-Kerri

 

Parenting Perspective Column published in The Forum of Fargo-Moorhead on 2.21.12

Overcoming surgery fears

By Kerri Kava

I recall how scared I was waiting to go in for a C-section to have my son. Edgy, nervous, wishing it wasn’t necessary.

But that passed and a new challenge was bestowed on me.

My son, Carter, who is now 4 years old, lives with a genetic disorder called Williams Syndrome. People who live with Williams Syndrome often have complications with anesthesia due to a weakened heart.

I remember the first time we brought 3-month-old Carter in for a hernia surgery.

That night was probably the worst night of our lives, not because of any procedural scares, but because I slept in a chair next to our colicky baby and my husband slept on this heater/bench contraption.

The surgery went well, and although they wanted to watch him over night because his breathing was irregular, we were able to go home the next day with careful instructions for him to not jump or lift anything heavy. Since he was 3 months old, we thought that shouldn’t be much of a problem.

By the time Carter reached 6 months, we were back at the children’s hospital in Minneapolis, doing the same inguinal hernia procedure, only on the other side. At this point, he had already gone under anesthesia twice.

I can’t explain that feeling, that moment right before your little child is whisked away to a surgery you’ve had weeks to prepare yourself for. I can’t imagine how I would feel if he needed an emergency surgery. I suppose there would be less anxiety for the day to finally be here.

Despite the gift of time, nothing prepares you for that moment. That last little finger grasp before he goes under; that last kiss on the forehead.

The moment he disappears between some double-swinging doors your knees go weak and what you really want to do is slide down the wall and cry because you know you can’t do the one thing you want to do. You want to go in there and help. Your heart is trying to convince your brain to grab your little baby and run back to Fargo.

One year ago this week, my husband and I brought our son back to Minneapolis for a triple procedure. We were able to do an echo to check his heart, put tubes in his ears and do an eye-alignment surgery all in the same operation, undergoing anesthesia only once.

The surgery was a success. And better yet, it was over.

That same night we were able to bring him to the hotel at which we were staying in downtown Minneapolis. I remember lying him down to sleep on the giant king-sized bed and ordering room service with my husband.

There wasn’t a table in the room, so we celebrated the success of the surgery and our sleeping, healthy boy by having a little picnic on the floor and clinking our fancy water glasses together.

That night and driving home the next day, we felt like we had won this round. Round 2 soon came while doctors determined if his little brain would allow his eyes to stay aligned after moving those muscles to a new place. As it turns out, it’s not aligned perfectly, but it’s so close that his doctor believes there is no reason to proceed with another surgery.

We hope we hear the same answer this week when we travel to the Cities for his one-year follow-up.

Every trip, every appointment, every mile, every last detail is so easily forgotten when every morning, I wake up and open my eyes to see this little boy staring at me.

“Guda morniiing!” Good morning, my sweet little pea.

Kerri Kava is the Newspapers in Education coordinator for The Forum.

 


 

Support Williams Syndrome

Support Williams Syndrome Awareness locally by participating in the local FM Walk for Williams on May 5 in Lindenwood Park. You can register online and learn more about Williams Syndrome by visiting: www.williams-syndrome.org.