what’s it like to be a special needs mom?

I found this poem today. I can’t take credit, notice I said I “found” it online. But it is well written and has a great message that I would like to share on my blog. So here it is:

Welcome To Holland
by
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It’s all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy!  I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan.  They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It’s slower-paced than Italy, less flashy than Italy.  But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there.  And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” 

And the pain of that will never, ever, ever, ever  go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

*     *     *

©1987 by Emily Perl Kingsley. All rights reserved.  Reprinted by permission of the author.

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Parenting Perspective Column published in The Forum of Fargo-Moorhead on 1.10.12

I was probably a little naïve going into it.

Of course the last one went fine, even though he cried. The gal got it on the first poke, no problems. He got a Muppets sticker. Well, he got a few actually, but don’t tell anyone. We walked out of there to find the sun shining on our faces and smiles came again, soon after. The tears were quickly forgotten.

This time was much more difficult. Not only had the gal I’d grown to depend on for my son’s blood draws drop the ball, but my son became much more difficult to restrain. We couldn’t hold him down with just one or even two people anymore. No, now it took a whopping four people to restrain and draw blood from his tiny little arm, searching and seeking for his tiny little blood vessel.

This painful process repeats itself every two months in order to check his calcium levels and maintain a level he can live with.

My son, Carter, who has a rare genetic disorder called Williams syndrome (WS), has high probability of getting Hypercalcimia (too much calcium in his blood). For some reason, people with WS absorb calcium at an extremely higher rate than the rest of us. Due to its rarity, it’s under-researched, leaving most of us who want to know, left to wonder and wait.

Left untreated, Hypercalcimia can cause body pains, kidney stones, and it could cause your heart to stop. That being said, we do the one thing we know how to do – sustain it with diet so he doesn’t have to undergo cumbersome Pamidronate infusions. It involves drinking as much water as possible to flush out the calcium and replacing regular milk with a special formula called Calcilo. Taking both of these steps is fine with us, it’s the blood check every two months that’s becoming more strenuous. (Although much less strenuous than the infusions.)

We’ve all been there. Sitting, standing, whatever position you find yourself in while your child is screaming in pain. I can name no other circumstances similar to that emotion. That feeling where your child is hurting and you, their No. 1 advocate, rendered motionless.

I sputtered some words, which I know he didn’t hear over his agonizing cries. I’m almost sure I just say them out loud because I know the staff members want me to say something. So really, I just say it for them because there is no reasoning with a child who is screaming in pain. Especially not mine who has special needs and doesn’t understand reason.

After all of that, Carter’s lab technician couldn’t find the vein. Let’s face it: We’ve been drawing blood from these little arms for all of his four years of life, since he was 5 weeks old. Isn’t it obvious by now? Would placing a stick-on tattoo with an arrow be going too far? I’m starting to think it would be appreciated.

Everyone says different things. Go to the main lab between 10 a.m. and 2 p.m., because that is when the most experienced technicians are on duty. So we do. Believe you me, it is much more convenient to wait until Saturday, but we don’t do that in hopes to have a quick and (not as) painful blood draw.

Others suggest we try nitrous. Well, we’ve done that for other things and due to his short gag reflex, he made himself throw up. Still, I think we’re going to try that again, in addition to some cream to numb some of the pain.

I wish we could take away all of the pain. As parents, I’m sure we would all do that in a heartbeat.

Perhaps it’s that very pain we experience, as part of motherhood, that is the pain our mothers wish they could take from us as well.

Kerri Kava is the Newspapers in Education coordinator for The Forum. She can be reached at kkava@forumcomm.com.

Parenting Perspectives Column, published in The Forum of Fargo-Moorhead on 11.29.11

Patching and pointing and taking it in stride

 

This Thanksgiving weekend reminded me of a life lesson to be thankful for. Actually, I have my son, Carter, to thank.

The lesson stems from a recent trip the two of us took to Fleet Farm.

“Just a little longer now buddy, we’ll go look at cows and you can play while we wait for our tires to be put on the car. But please don’t fuss. You know you have to wear your patch for a couple hours every night to help strengthen your right eye.”

The sound of little feet pitter pattering full speed toward his favorite thing – toy cows – my 4-year-old boy with special needs does so with his left eye patched, looking like a pirate, without so much as a complaint.

“Run, run, run …” which sounds like “won, won, won” coming from his little lips as the anticipation grows. We walk in alongside another family with three children, all boys. One boy is old enough to wonder, “Why is there a patch on that little boy’s eye?”

Carter, who has Williams syndrome, a condition in which Strabismus (a fancy term for when your eyes do not line up), heart complications and developmental delays are common, never notices or picks up on the social cues of him being different. I find that a blessing. I wish I didn’t detect it. Then, it wouldn’t plague my heart so much.

My husband is exceptional at ignoring or not even noticing other people staring, he just goes about his business and sets his mind toward the goal, whatever that may be.

I’m not as good at that. I notice other people, even adults. Truth be told, I think its other adults that allow it to be the most difficult. Had that mother stopped staring, maybe she could have demonstrated to her child the correct behavior: to move on with your business and not stare, because it isn’t polite. This is merely conventional manners right?

If you see a burn victim or a person with dwarfism, yes their appearances may be different, but that does not warrant it OK to stare, much less point, which occurred later in the same visit to the store. Perhaps I shall pretend they are staring because of the brilliant blue eye that is showing or his amazingly captivating smile.

Carter has struggled with his eyes since he was a newborn. We patched his left eye for a couple of years before finally having a surgery to correct the crossing last spring. A few follow up appointments later confirmed he needs to start patching again. In efforts to avoid a second surgery (where anesthesia is often fatal for people with Williams syndrome), we are patching just as instructed by his eye surgeon.

A couple of years ago, I remember standing in church, singing songs with my family, not able to focus because of two children in front of us that absolutely could not stop staring at his patch. Another year later, no patch on, a woman felt the need to point out that he had Strabismus, as if we had no idea. I like to think this doesn’t get to me, but I would be lying if I told you it doesn’t hurt.

I understand people are curious, especially children, and I’ll be the first to tell you that I adore children and their curiosities. I think instead it’s something special needs parents need to work through, understanding your child is different and special, and knowing that with those special attributes come special challenges.

Learning to sit up, crawl and walk were very difficult for him. Now he is working hard on talking. And like many other children who don’t even have special needs, he needs to train his eyes not to cross. Our little boy, full of joy, lets you put the patch on and simply wrinkles his face a little when he knows it’s coming, saying “OK.”

If we all have this “can-do” attitude to whatever challenges we face, what a better world we would have to live, learn and love in.

Kerri Kava is the Newpapers in Education coordinator for The Forum. She can be reached at kkava@forumcomm.com.

 

bring it on, i’m not going down without a fight

It would be naïve to think that my life was harder than all others. Someone wise once said that if we threw all of our problems in a pot and looked around at others, we’d grab our own problem right back.

 

I don’t really think of my life, my situation as a “problem,” but I would say it is a blessing full of challenges. Daily challenges.

 

I’m not really a complainer. In my life, in general, I typically have a “can-do” attitude. But we all have days that really break us down. I don’t find it coincidental that is lands on Mondays, quite often. It is Monday today and for me, that really difficult day happened.

 

It’s sort of one of those days when you want to just go back home and start it over, but I can’t so I won’t.

 

Today, what got me down is a number of things. Probably a couple of little things that have been building, but what probably put me over the edge, emotionally, was an email I received. It was a simply update from Carter’s therapist. It was, altogether actually, a great email, with a simple question at the end.

 

“Did Carter eat any of his Thanksgiving food?”

 

Now, to most of you, this probably doesn’t seem like an emotionally staggering question. But food and eating is something we struggle with on a constant basis. Carter eats well for others (his therapists and his daycare provider). He does not eat well for mom and dad, unless it’s exactly what he wants. Last I checked chips and pizza are far from nutritious.

 

I never wanted to be one of those moms that gave up. I still don’t think I am, but when it comes to meal time, I’m a short order cook. I make something for my husband and myself, and then I make something that I cross all my fingers and hope and pray he will eat a smithering of.  What’s most frustrating is that he used to eat things like baked chicken nuggets or grilled cheese, but has recently refused to eat those. He won’t eat anything that has to do with pasta, fruit, vegetables, meat (in general) or a bun. In fact, it would probably be easier for me to tell you what he will eat. Carter will eat toast, most dry cereals, pizza, bananas, baby foods, ice cream and yogurt. If you’ve been reading the blog, you probably know we have to limit his calcium, so the one food he loves and will eat (yogurt) has to be limited drastically. 

 

Now, I realize I am complaining a bit and for that, I apologize, but for those of you with children that you can simply microwave a “pasta pickups” meal, or toss some spaghetti noodles with some pasta or even hand them some tator-tot-hot dish, even if they complain (but do eventually eat it) please know you are very blessed.

 

I’m not saying that I’m not blessed, for this, I know I am. Carter brings me the most joy in my life. He lightens our life like no one else can. But a mother is allowed to fall emotionally from time to time. I’m allowed to hate Williams syndrome right? I love my child. I am usually an annoyingly positive person, but Williams syndrome is getting the best of me right now.

 

Tomorrow will be better. I will get up and feed our boy and make sure he has his soft food in his tummy, because I know it was good for him. I don’t care if it is pureed and not exactly normal. I realize that someday soon he will start Kindergarten and when the school cooks have to feed him, we are probably going to experience difficulties. So maybe I have to go have lunch with my son every day until he finally eats more solid food. So what, I can handle that. Bring it on world. I’m not going down without a fight.

Memories: making them and remembering them

I did something this week that I rarely ever do. I took off two days of work and kept them to myself. I found a babysitter for Carter for the weekend and I ventured off to a small lake town about an hour away from home with a couple of friends and a few other ladies that I’ve never met before. I drove over with an old friend Tracy who I have not seen in over a year. We had fun catching up and visiting. We took a picture together outside of a giant pumpkin that quickly became our chair. We scoped out a little gift shop we decided would be fun to come back to tomorrow. It smelled like pumpkin pie and looked like we walked into Christmas, with all the presents on the shelves. Of course, everything seemed slightly outrageously priced so it was kind of fun to just look. We didn’t buy anything, but we left with some fabulous ideas for decorating. It was the kind of shop you walk out of and silently think,  I wish i owned that.

It’s hard to leave your little boy. At least thats how I felt this week. The thought of leaving my big important job to another person, is difficult for me. Even though we all need a break from our big important jobs sometimes… and I believe in doing things to help ourselves stay sound and healthy. I’m very blessed to have an amazing husband to care for Carter while I am away doing those short Momma needs a break moments. Except he was out of town this weekend, as well. So my other blessing, our babysitter was able to watch our Carter and his wonderful Aunt and Uncle are going to watch him some, as well. While, I know he is having a blast, I do keep feeling a little guilty that I’m not doing my job. I know I’ve talked about guilt before on this blog, so I don’t plan to talk about it again today, but instead just mention I’m feeling some of that. But at the same time, I made some amazing scrapbook pages recollecting all our memories of love and blessings. I wrote about his first year in school last year, our 4th of July with family and about his love of those black and while cattle… cows, of course.

I slept alright, but here I am awake at 6:30 a.m. It could be because the beds are much harder than what I am used to and the house is quite chilly or it could be because I’m used to waking up to my big job Carter every morning at 6:00 a.m. him walking in and saying “Moooorning! Cows, Mooooooooo! Hi! Hi! Hi!”

Here are a few pictures of the pages I did on my first day. I’m sure I will get better at it. But these are my “starting out” pages. I love my Carter.

 

 

Parenting Perspectives Column, published in The Forum of Fargo-Moorhead on 10.18.11

For those of you visiting my blog for the first time, welcome. I am full-time mother, wife and employee of Forum Communications Company. I coordinate the Newspapers in Education program and just recently began to contribute to the Parenting Perspectives Column in the new and exciting womens, SheSays section. I am excited to share with you my journey as a parent of a very unique little boy named Carter. If you have any questions or would like to share you comments with me, please feel free to do so. I welcome your feedback!

Parenting Perspectives Column 10.18.11 - Full version.

My baby was just diagnosed… Now what?

By: Kerri Kava

I thought something was wrong. It was there, in my gut. I ignored it. It nudged and I pulled away. Although I pretended everything was alright, I knew in my heart of hearts, all was not. I had to know. I had to listen to what was whispering in my ear, to what was now pounding on my door. A brief visit to the doctor opened a can of worms that never in my life could I have predicted I would face. All along knowing, it’s not MY job that is hardest, but even worse, that difficult journey belonged to my tiny, unknowing, delicate little child.

It took me approximately one month to come to terms with my, let’s call it a hunch. My son was diagnosed with Williams syndrome (WS) at a mere 6 weeks of age. For those of you who know what WS is, it’s a giant stroke of luck to be diagnosed at such a young age. Most people go undiagnosed for years – some even into their teenage years, because it is such a rare disability.

After that persistent hunch, a couple of doctor visits, one horrible lab work experience, with a newborn, drawing blood from a tiny little arm, breaking his blood vessel in their first attempt, this first-time amateur mom was not so trusting the second time. But my heavy heart reminded me of that whisper… You have to know, you have to do this. Two grueling weeks later, our results confirming his diagnosis came over the phone, a mere 2 days before my maternity leave had come to an end.  There I was in my in fuzzy slippers and pink bathrobe balling like my baby, not so ready to begin my journey as a special needs mom.

Now, I think it’s important for you to know… I’m no doctor, no therapist, not even a student studying psychology and I especially have no fancy letters after my name to prove my opinion valuable, but I do have what it takes to offer my advice, that being, experience. I have had the heart aches, the comments that to this day, continue to break my heart, the life-changing fragile decisions to make, the multitude of hours educating myself to advocate for my child, and the efforts to get through a day that many others may never understand and really, that’s just the beginning. I’ve walked in your shoes and I can relate to the whispers in your heart and that disturbing and inevitable pounding. I passionately believe, there is not enough support for the heart of a mom. Whether you are single or have an amazing support system at home, we all cope differently. Everyone knows that men and women cope differently. Some things that are hard for me to go through do not even faze my husband. Please know that as you read this, I am writing to you moms. I can’t relate with what your husband is going through, but I think I can help you by sharing what I went through and what I did after that phone call, how it hit you like a bullet. It’s interesting because, it only took 2 minutes for that doctor to deliver news that would quite positively change my life and the life of my family forever, so when the words are out and my mind processes that my hunch was confirmed, you are never ever really ready for it. I wanted to hear something more from the doctor… something along the lines of what I’m about to write for you here. First… you are going to feel like this, then you should do this, you might want to consider this…and that…and all these really valuable opinions. If only life was that simple? No, no we need to search for our answers, my friends. In searching for this news I said, “So now what, what do I do?” His answer, simple, “You take care of him. You love him, you feed him, and you look after him.” I think, looking back, him suggesting I make an appointment with my sons pediatrician would have been the best advice to follow that sentence, but my own common sense told me to do that anyway.  So here it is moms, this is how I chose to not just cope, but to, of course, love and live as a special needs mom:

Mourn. It would be foolish to think you can handle learning your child has a disability and not feel pain and sadness. Your heart is aching, inside you are yelling, “Why, why my child?” over and over again… it’s not awful to feel that way, really it’s not… it’s just your heart coping with what your mind has learned. So let it out, there is no shame in that.

Accept it. That’s easier said than done, of course. This list is in no particular order, and I’m not saying I completely accepted it before I moved on, but whether you accept it or not, it is your child, eventually you have to, not only for your own mental health, but for the well-being of your child. They need your love – can you give it fully if you’re lying on the floor?

Choose the best way to tell your family and friends. I opted to write a letter. I knew I wasn’t strong enough to call my closest friends and family and tell the story over and over again. Do what is best for you, sustain your mental health and for your child, your family and friends will understand. You know that saying, “Those that matter, don’t mind and those that mind, don’t matter…”

Apply for assistance.  (SSI, MA, Etc.) No one wants to apply for government assistance, but the programs are in place for good reason. I don’t know how much money you make, that’s between you and your accountant, but having a child with special needs can really affect your monthly budget. All children’s health concerns are different, but most children with special needs have a lot of trips to the doctors’ offices and it’s not just the general medicine doctor either, it’s a dozen of specialists and the appointments have no end in sight. Don’t go it alone if you don’t have to. Take the time and fill it out it. Even if you think, there is just no way that we will qualify… Fill it out anyway,. There are programs in place for families who make above poverty levels, as well. Yes, it’s time-intensive, but educate yourself on everything that is available. Stumbling? Ask a social worker to help you.

Contact your local school district to be screened for Early Intervention eligibility. Early Intervention (EIS) is your local public school system. They begin educating your child very early, so when they arrive to pre-school and Kindergarten they are not as behind as they would be without structured early learning. EIS can take a few months to process and begin, but once the IEP (Individualized Education Plan) is developed, a team will come to your home, daycare, Etc. and work to help your child reach new milestones. Do not over look this one, or put it off, it is vastly important and will educate you, as well.

Look for a national organization that is reputable to become educated so you can answer questions and inform those around you about how to better understand your child. Almost all disabilities have some sort of national website or resource to use. Take advantage of those and support them, if you can.

Seek a local support group. Although it may seem like it, you are not alone. Make time and commit to putting yourself out there. There are other moms just like you. You may think you don’t need the help, but someone may need you.

Take time to manage your own life, then when you can – advocate for the cause. Whether you go to a awareness walk or start your own, do whatever you can that is right for you and your family. Maybe the first couple of years, you have nothing to give… that’s alright, being there for your child is most important, you will know when the time is right for you.

Take time for yourself and remember although your child has special needs – they are just like every child who needs your love. They may learn differently, they may talk differently or not at all, they may have more health problems than others, you will probably have to jump through a lot more hoops and open your home to a lot more specialists, therapists, doctors and social workers than your neighbor, but their love is special and priceless. It’s a special love you could never trade and I’ve been told many times, “Only special moms, get special needs children” and “God will only give you what you can handle.” So be confident in that.     

I leave you with some words I read once and never let go of…

“You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil … you are the mother, advocate and protector of a child with a disability.”  – Lori Borgman

boy parts

 It just goes to show, you should never get too comfortable. Comfortable is a nice place to be, most of us find that spot and choose to stay there until kicked out, usually in an abrupt fashion.

 Most of the time, while my happy little demeanor is in a wagon behind me, I reside in a comfortable place. I have a great family, great job, and I surround myself with beautiful people that make my world a wonderful place to not just survive, but live. But none of us are without hard times, and if we were, would we need comfort? I don’t think so.

 Before I tell you what brought me out of my comfort zone, let me first apologize for avoiding you blog readers. I’ve been so comfortable lately, I’ve been choosing to read and clean my house before the frost and snow is everywhere and I usually don’t feel like cleaning at all once Mr. Frost show his face. Don’t let me fool you, I don’t ever have a desire to “clean” at any point in my life, but I do have problem with living in an unorganized clutter of dust. So once it gets too backed up, I tend to go on a little “cleaning spree” until I feel my world is back in its orbit.

Back to the point… like so many other moms, we learn from other moms. We watch them, we ask them questions, we think silently to ourselves…  “I wouldn’t have done it that way…” but although we all “mother” uniquely, we all have the same concerns. Health is the biggest concern I have for C-Man. From the day he was born, doctors were concerned and specialists have been stumped. Now that we think we have many of the mysteries figured it out, what lies before us is a pile of what I would call little stuff. There are a whole bunch of little health concerns with Williams syndrome. There are big ones too – that, of course, we pay special attention to… but I happen to think it’s the little things that cause the most heartache. The repeated little surgeries that are starting to come up in our lives habitually. I wish it was a bad habit I could chew some gum for, but it’s not and now we write the next chapter.

 For those of your wondering, as far as we know, C-Man is still living with Osteoporosis. At this time, we are waiting to see how he grows and to see if he can grow out of this entire Hypercalcimia scare. Once that is over, we can start supplementing with Vitamin D and hopefully Osteoporosis can go back to hiding in its dark, creepy and dampened cave. C-Man has not broken any bones yet, and yes… he does fall down a lot. I’m pretty sure it’s safe to say God has been deploying many majestic angels to cushion his fall and place imaginary bumpers on corners wherever he romps, because how he has not been “broken” already is a case only my heavenly father can solve.

 For those of you who know me, I take my mommy job quite seriously. With all jobs, we are to watch and learn from others right? I do my best to keep up with my online support group, but I must admit there are times that weeks go by, before I get a chance to even read a few of the updates and posts by other moms. I try to contribute and offer advice from my experiences, as it is not just about receiving, as it is giving, too. So I do my best. Well… I missed the boat. I saw a friend from New York posting about a surgery her son was having. My first thought…

I should absolutely already know what he is having surgery for, because she is my friend, he has WS just like C-Man and we have watched each other’s boys grow and learned from each others experiences for nearly 4 years now, how can I ask her what the surgery is for?

 So I did what anyone would do… I asked her. She told me it was a Bilateral Orchiopexy. For some reason, Google instantly came to my mind. How about you? Well let me tell you, it is a procedure done to repair undescended testicles. Now, I promise, I will not make it a habit to talk about testicals on our family blog, but today… I am talking about them, yes. If I have offended you, please hit the red x at the top right corner of your screen.

In Williams syndrome, there are a lot of traits that people with WS share across the board. Of course, there could be other things that absolutely are not, but undescended testicals happens to be one of them. I knew, right after she told me what he was having the surgery for, that C-Man would need it, as well. I brought this very concern up to his doctor last time he had an appointment with him. In fact, I brought it up to the last two doctors and neither of them seemed too concerned with it. They both made my concern feel legitimate but not alarming enough that they even felt C-Man should be referred to a Urologist.

Please know, adding another doctor/specialist/appointment to our schedule isn’t something I want to do, but remember what I said above about taking my mommy job very seriously? I got to thinking… (Albeit while doing one of my 50 loads of laundry) what if one of his two regular doctors didn’t think it was a big deal, but what if it is? Maybe they just thought, he’s got a lot of other health concerns, let’s not worry about this one right now… but what if this is a big thing and we’re ignoring it because they don’t want us to take on more? I’m okay with more… I want optimum health.

I went back to Dr. Google and found a doctor in our health system. I made an appointment and I brought him this morning. I know some doctors have better bedside manners than others, but I truly believe there are people in this world that are simply uncomfortable around people with special needs. Remember, never get too comfortable, right? I think it was C-Man that booted this doctor from his comfort zone today. I imagine I could have made life easier for him, but I chose not to. I’m choosing to chalk it up to an awareness opportunity for the doctor.

(Insert apology here for my post getting much longer than I planned).

Our Monday started out great, I woke up feeling very refreshed, ready to continue sleeping if I could, of course, but still ready to get up and take on this busy week. Carter had already turned on his bedroom light and was sitting on the floor with a pile of books in his new blue robot footies jammies.

Did you know Osh Kosh sold footie jammies in 4T? Score.

I got ready, while C-Man munched on Cherrios, banana and his special low calcium milk. Slightly alarmed, I rushed out the door – realizing we are way behind to get to his appointment. My elite driving skills, allowed us to walk in the doors of the Urology department a mere 1 minute late. We sat down and I removed his coat and studly hat. He grabbed a magazine and planted it on the floor to look it over and name every object he could, whilst charming the entire waiting room. He was only able to look at the magazine for about 20 seconds before they called his name. We walked back to the room and the nurse was very nice, courteous and understanding, everything a nurse should be. Expectations high for an understanding doctor as well, the doctor walks in the door. He sits down and instantly C-Man wants his name tag. There is something about a name tag that pulls out on a winding string that fascinates him beyond belief. I’m thinking about getting one that says “mommy” who knows maybe I can use it to unlock secrets or open special doors like when there is a line for the bathroom. We all know how well moms can wait.

C-Man walked around the room without a care in the world. As far as he was concerned, we were there to buy our tickets for the carousel. He had no idea he was about to get his little manlihood inspected.

He handled the manlihood inspection quite well, I mean, yes, of course he screamed and I had to hold his arms down while the inspection was happening, but he bounced out of it well and went back to the magazine I found him with a birdie on the cover. “Tweet Tweet,” he whimpered after… with a fat lip and a tear on his cheek.

I was expecting the doctor to say, “Ah… he’s fine. Doesn’t hurt to have it checked out though, have a great day.” And walk out of the room. But he didn’t say that at all. He said, “Yes, I think we’re going to have to do a surgery to pull it down. It can cause cancer if it stays up there.”

At this point, C-Man is getting bored and walking around the room. He kicked the metal bed contraption and it made a banging sound that he was quite proud came from his doing. So, yep, he did it again. There must be something about becoming parents that you just start tuning those things out. It didn’t even really bother me at all and I could have quite easily continued on with our conversation with the sound in the background. But, Mr. Doctor did not at all care for it and said, “Hey, Hey now… don’t do that.” It was at this point; I quickly realized what was happening and stopped C-Man from kicking it again. I redirected him to his “book” but he found flickering the light to be much more fun. Mr. Doctor could not continue with the conversation from this either… he had that wine snob look on his face. That doctor could not answer my questions, or do whatever I asked of him (in getting a referral for the U of M, since that is where has all of his anesthesia surgeries) fast enough. He wanted to get away from C-Man. It’s difficult for me to tell if he wanted to  be away from C-Man and his syndrome, or away from a child in general, but had he been more personable and willing to talk to C-Man he would have quickly found a charming, sweet and lovable boy that would have gladly given him a hug and kiss goodbye.

I realize there are people in this world that are simply not comfortable around people with special needs. It isn’t that they don’t like them or want to help them… they just get into that (I’m not quite myself, I don’t prefer this, I want to get out of this room) behavior. I don’t dislike people that experience this, but with that, I also prefer to keep C-Man away from them. Therefore, the doctor quickly agreeing to give us a referral mildly brought me joy. He left and so did we. We know what we have to do, and we went through that experience to get through our next small thing, our next procedure. At first, we walked out of the building, into the fall air and crunchy leaves under our shoes, a little bit sad that we have to schedule another surgery and go through those fearful steps, but I know God and his majestic angels will be around us, watching over. After all, C-Man doesn’t make the angels even the least bit uncomfortable. So I’m going back to my comfort place for the rest of my day, because God told me, He’s got this one. Oh, and if my speaking of God and his grace makes any of your readers uncomfortable, I hope it prods you seek comfort there.

What’s next? Stay tuned. 

 

 

 

We jumped into 4 this weekend…

We don’t have a lot of parties… in fact, this last year we had “zero” big entertaining parties… so we get a tad zealous over celebrating the life of our little boy! And by we I mean, me… because Paul is easy-going and goes along with just about any of my silly ideas. But, the weather was perfect and the party came and went with out so much as a big ouchie. We enjoyed our time together. Here are few pictures from our day.

These are Grandpa’s shades … please note he will never let sunglasses stay on his face, so this is quite a feet. Maybe it was a maturing thing in the whole turning 4 day… Either way – he was being a goofball. Pretty fun!

 

cow love

Cows are the big time in this house. If you think you caught the jackpot with a brown moo cow, well you would not be alone. Because this guy, is with you there!

This is not C-Man’s favorite cow, but it is momma favorite cow to “forget” places. Those horns are ruthless!

This is what the “mooing” face looks like. As you can see here, I like all kinds of cows.

This is a cows rearend! Just in case you haven’t seen one before. That part of the cow makes different sounds.

These cows make me pretty happy. Did you know that my Grandpa has a Dairy Farm? Did you know that you can get cows like these for yourself at Fleet Farm? I have cows, horses, a seal, a lion, a polar bear, a moose, giraffe, elephant and a zebra. I still need a piggy though. Except whenever we visit the animals, all I want to take with me is the cows. Momma says she needs another baby calf “backup cow”. I have never heard of “backup” cows, have you? Are they like Jerseys cows or Herefords? Oh oh… mom just said they are cows that stay in her purse as “in case of emergency” because I guess her little boy throws stammering fits whenever he has to live a part of his life without the moo cows. She says, getting dressed in the morning, they are in  his hands, even while switching arms to put his sleeves in, going potty… (yes the cow gets washed too), to daycare, to the stores, to bath time, to nap time, to bed at night… wow, that little boy really does love cows. Maybe that’s why she decided to do a blog post about it. Oh, wait. That’s me! I love cows and I love you my friends and family!

prepare to be knowledgeable

Knowledge is power… someone smart said that once. I don’t remember who, but I remember it. So that guy that said it, must really be something. If you know who that is, feel free to add a comment below – then I can edit my post with the information and delete your comment. See how slick that works? Now that you know how I operate, let’s talk (by talk, I mean, listen to me talk…) about why I said it.

The definition of POWER – according to Wikipedia is “a concept in economics for which there is no agreed upon definition” – well this is one of them. I included this because I think it’s comical. So moving on to the definition I’m choosing to share is: POWER – “an agent used to create motion” (Thanks Wikipedia, once again)

In this case, the agent for me, is knowledge. If you know more about “something” you are more likely to create motion to do… something. In my case, last night I luckily stumbled across a Williams syndrome blog, written by a another Williams syndrome mother (like myself) who, in my opinion, is a genious. And my opinion is fabulous, trust me… I’ll back it up! But no, really – there are a lot of great resources for (WS). We (as a community of families who care for someone with an extremely rare disability) are blessed with a vast amount of resources that seem to be ever growing – thank you to the Internet, and constantly connecting – thank you to facebook.

I found this blog to be different, because it explains all the little things, most people don’t know about in a very detailed manner, while backing it up scientifically. Wow, that was a big word for me! I could never imagine writing this blog, but can already tell it’s going to be an excellent resource for me and the friends and family who love our little C-Man and want to learn about his syndrome. Not just the “typical” but the “why” and “what can we expect”?

I’m excited to share this with you! If you would like to visit this extremely information, crucial and sometimes the sad truth blog – please go here.

My next blog post – has got to be about C-Man and his love for Cows. I have to take some pictures first though – have a great evening everyone!

Kerri Kava