Friday, October 22, 2010

Glimmer

Alright, let me get down to business first.

You probably figured out from my last post (or maybe you didn't!) - Kingsley is a supermodel! For real! After I posted this: BUSY Meaghan from Petal Babies sent me a message asking if I really wanted Kingsley to model for them. Of course I do! It would be wrong of me to hoard all of this cuteness for myself, you know. Amanda Kopcic was doing mini-photoshoots for fall and fit him in. I have only seen a couple pictures, but they are fabulous. The photo session was so cool, Kingsley was a rockstar (of course) and looked adorable. He got to model a few of the gorgeous hats and one cute outfit.  So fun!




The pictures will eventually be on the Petal Babies website, and on Amanda's if she wants to use them.


Other than the photo shoot on Tuesday, we have had a super busy week.  Therapy, playgroup, swimming, doctors appointments.  I know I said I was going to start fresh and just look forward instead of back, but I've actually been slightly obsessed with looking back. And when I look back, you know what I see? Kingsley's legs moving a whole heck of a lot more than they do now. Even in this video he is moving way more than he does now.  In videos of him when he was a newborn, he can tuck his legs underneath him, like a mini crawl position, and then straighten them out again. I used to have to hold his legs down a bit when I cathed him, now I can prop the bottle behind his knee and go chase Cordelia without worrying about it getting kicked or tipped.

From what I understand, after their closure surgery there could be swelling and spinal shock which can take up to 6 months to heal and therefore take that long to show their true potential. If that is true, then he should be showing more now than he did in his first weeks. For some reason, with Kingsley it's the exact opposite.

And it's not just me wanting to remember things a certain way.  His PT mentioned having seen quad action before that he isn't showing now. My mom (a former PT) says she can't get him to do things he used to do. His paediatrician said today that he isn't kicking the way he used to and his tone isn't what it used to be. She's concerned, so she's set up an appointment with his neuro in a couple weeks to make sure something else isn't going on.

I feel like I'm holding my breath right now.  Am I supposed to hope that something is wrong so that it can be fixed? Am I supposed to hope nothing is wrong and just accept that - for some reason I may not ever understand - his functioning level is so much higher than his defect level?  It feels wrong to hope that he can have another surgery or something that will make things the way that they are *supposed* to be, especially when I don't even know if that's possible!  Does it make sense?

I could ramble on and on about this forever. My mom and I do the circle over and over: why isn't he moving? maybe his defect was higher. his scar is in his bum crack. okay, so the defect was low. then why isn't he moving? No answers. Why why why why why.

I have decided to embrace the fact that I am just not an optimist. This little glimmer of hope that there may be an answer or (dare I even hope?) a way to improve his functioning is consuming me. I feel like I'm setting myself up for disaster.

Anyway. Back to happy news!! :) Kingsley is currently in a photo contest on the Petal Babies facebook page. If you have facebook, mosey on over to the page, LIKE it and then put VOTE under his gorgeous photo. While you're there, you may want to check out another gorgeous face you might recognize. ;)  Kingsley thanks you muchly!

Tuesday, October 19, 2010

Tee Hee

I have a secret, but I don't want to share it yet!

It involves this: http://amandakopcic.com/  and a little of this: http://www.petalbabies.com/  and a big dose of this:


Stay tuned ;)

Monday, October 18, 2010

Hey, Got a Minute?

I've mentioned before that October is Spina Bifida Awareness month in the USA. I also mentioned that family that is currently struggling with whether or not to keep their unborn child with SB. She's not alone.  There are women like her across the world, every day.  There are also amazing, wonderful children like my Kingsley and mama's like me who are raising these little people to be the best they can be.

A big group of these moms have planned a big event for Wednesday - two days from now! So, whether you pray or worship or send out vibes or think positive thoughts or hum to the stars, if you can find some time during lunch hour on Wednesday to do that, for us, it would be incredibly appreciated. 

Spread the word, pass it on.

It's going to be quite the power lunch.


October is Spina Bifida Awareness Month, and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world. To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are be...autiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives.



So we proclaim Wednesday, October 20 as the Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side.


We will begin at noon EST. Pray for as long as you feel led. Pray individually or with another person or group. On your knees, at your desk, while driving your car … the logistics do not matter.


Here are a few things you can pray about specifically:


1. There is one woman in particular who is on our hearts. God knows who she is. She is expecting a child with Spina Bifida, and she is afraid and considering termination. Today (Wednesday) is her appointment with a pediatric neurosurgeon to find out the severity of her baby’s case and to learn more about the diagnosis. Please pray that she will go to this appointment with an open heart and mind, that the doctor will give her a prognosis that is realistic and hopeful (we believe these adjectives are not mutually exclusive when talking about SB), and that most of all, God will give this woman a peace beyond understanding and a clear indication that she should keep her baby or give it up for adoption. There are many mothers willing to adopt this baby.

2. Obstetricians are usually the doctors who first diagnose Spina Bifida based on a prenatal ultrasound. Unfortunately, most know very little about SB except for what to look for on the ultrasound. Many of us were told by our OBs very scary and inaccurate information, such as “Your baby will likely not survive,” “She will be a vegetable,” “Terminating is the most loving thing you can do for this baby.” If this is the first time you’ve really even heard of SB, and a doctor you trust tells you this, you’re probably going to believe it. Please pray that these doctors will be educated about the SB prognosis so that they can give the diagnosis accurately and compassionately.

3. We SB moms will always remember the day we received the diagnosis as one of the most terrifying days of our lives. An initial grief response is denial, which often presents as “Please make this problem go away.” Termination is offered quickly. Please pray for these mothers and fathers, that they will first and foremost trust God to get them through this scary and uncertain time instead of letting fear guide their decisions. That God will draw near to them and make His presence known, as He did for so many of us. That these parents will be so filled with His peace about the future and love for their child that they will consider carrying the baby to term the easiest choice.


4. These precious babies are absolutely innocent and helpless. They are being thrown away because they are not “perfect.” Not one of us is perfect. Please pray for the lives of these babies to be spared. That each movement and kick will remind the mother that God knit that baby in her womb exactly as he or she should be. That their lives will bring glory to our Father.

5. Many of us SB parents cite the support of our family members and friends as the biggest comfort during the time right after receiving the diagnosis. But there are also families and friends who are unsupportive and even encouraging of termination. Please pray for these family members and friends, that God will use them to minister healing to the parents’ breaking hearts. That they will be wholly supportive, not hurtful, and they will lift up and help these parents as their raise their child.

Feel free to add other suggestions for what we should pray. And please pass this on to friends, family, church prayer groups, prayer warriors, pastors, and strangers.

“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.” Matthew 18:19-20 (NIV)


Thank you.

Sunday, October 17, 2010

The Mirror of Erised

Yeah, I'm going there. It's another Harry Potter reference. You'll have to wait for it though.

I've been struggling the last couple of days, as I know many of you have been.  For those of you not in the SB world, I'll spare you the gory details and just say that there is a woman out in cyber space who felt the need to post a poll on her blog asking whether or not she should terminate her pregnancy after finding out that the baby has SB.

I don't even really know what to say about all of this.  I know that there are many, many women in the world who make the decision that she is contemplating. More of those women, in fact, than there are who choose the path that I'm on. I've known this for about a year now, but it wasn't until yesterday that the impact of those statistics actually hit me.

How do we counter that? How do we fight those statistics? One of the big ways is exactly what I'm doing right now. We show the world what a child with SB looks like. We show them how beautiful and amazing our children are. We promote awareness and try to dispell the myths that are out there - that our children are suffering and living only a half life, crippled with disability and despair. We show people the joy that is in our children's lives and that is in our life because of our children. We assume that if people only saw OUR kids, they'd make a different choice. There have been some amazing posts about this lately that truly warm my heart, like here, here, here, here and here.  And here!


And then.

And then I read comments by this woman about how she has read all of our blogs and that our lives scare the crap out of her and that's part of why she's contemplating termination.

It's like a suckerpunch to the gut.

It's like someone had held a mirror up in front of me and shown me my worst nightmare. I look at Kingsley and see the most gorgeous baby boy I have ever laid eyes on. She does not. I see a rockstar who makes gains every day. I see his smile, his strength, his vitality. She sees the gains he's not making, his scars, his weaknesses, his vulnerabilities. I see therapy as an opportunity to relish every moment of his growth. She sees it as a huge money-suck. I see our life as blessed. She sees it as cursed. In the mirror she holds up, I see the Special Needs Mom with the Disabled Kid.


OK, maybe not exactly since I don't know that she ever even read my blog, but even the thought of her looking at any of my little online sweethearts and seeing anything less than I see makes me more nauseous than I have been in a long time.  I look at Lyla and see an angel. I look at Nate and I see a miracle. I look at Annabelle and I see a warrior. Nickolas, Charlie, Alex, Grey, Nate, Esther-Faith, Beckett, Zachary, Caleb... the list of amazing kids I've never met but feel like I know so well is growing every day.

If I had a crystal ball one year ago that showed our life now, I would've breathed easy. I would've relaxed. I would've just sat back and waited for my little love to be born. We're showing her that crystal ball right now and she's not remotely reassured.  It feels like she's looking at each of our children and saying: "I would've aborted him." 

In Harry Potter and the Philosophers Stone, Harry stumbles upon a mirror that shows "only the deepest and most desperate desire of our hearts."  I've been thinking lately. If I stood in front of there right now, what would I see? What would we all see? Would we see our children who have SB there with us? Of course we would. OF COURSE WE WOULD. Would they have SB?  Well, that might depend. We are who we are because of the path we've taken. Would Kingsley still be Kingsley without the SB? Would I be the same person if I hadn't gone through what I have in the past year? 

All I know is that the most desperate desire of my heart is for my children to be happy.

And they are.

Just the way they are.

Wednesday, October 13, 2010

Spidipida

I said once that SB takes up only a half our of my day and the rest is just living. In that half hour, I chat with other SB families, blog, think about SB things... I guess it's probably expanded to about an hour a day now as the community of fabulous people has grown ;)  My point though, is that although this blog is mostly about SB related things, our life is mostly non-SB related things. The two other biggest things that life revolves around are these little creatures:


Since Kingsley adores them so much, I figure I'll tell you a little bit about them.

Rachel is four and a half years old. She started junior kindergarten last month, going every morning and she loves it. She's such an outgoing little girl. From birth, Rachel has been nothing but sweetness. She was a pretty easy baby, adorable little toddler, funny little preschooler and now the best little kindergartener you could ask for. She's so talkative and will chat your ear off most days. Rachel loves books and is somewhat learning to read right now. She is a fantastic colourer, drawer and crafter.

(these are a butterfly, Rachel fishing in a sailboat, and a unicorn with a fluffy tail)

(Rachel and Cordelia playing outside)

Rachel is a dreamer, an artist, a space case.  She's always thinking and as a result, will often be looking at you but her mind will be somewhere else.  My sister used to ask if there was anything not-perfect about Rachel and that would be it. Her nickname is 'turtle' and it's perfect for her because she is often painfully slow to do things. It's hard to pull her back down to earth.  She is such a girly girl.  She loves princesses, butterflies, rainbows, unicorns, fairies, flowers, and all things pink and purple. She loves to dance and sing and even did a solo dance at her preschools year end show last year.

video

(her own choreography. this was just a couple weeks after she chopped her hair off)

Rachel was 26 months old when Cordelia was born, so she doesn't really remember much about it. I was really torn regarding what to tell her when Kingsley was coming. Mostly, we tried to prepare her for us not being around much after his birth. Once he was home, she wouldn't know that his special things were anything different than any other baby and that's basically how things are. She talks about when she was a baby and she needed help going pee-pee. She catheterizes her dolls. She asks if she liked medicine when she was a baby. She assumes all babies have a therapist to come play with them.  She doesn't know that Kingsley 'should' be sitting or crawling. She just thinks he's Kingsley.

About a week after Kingsley and I were home from the hospital, I found her crying in her bed. She was afraid that we were going to go away again, back to the hospital. Although the daily SB things don't phase her, I think another hospital stay is going to ruffle her a bit so I've been trying to talk to her about SB more lately.  She can't get the words right. She calls it "his Spi'Bify" "Spidipida" "S'barf" (she thinks barf is tremendously funny). 


I've been pointing out pictures of kids in wheelchairs in her books, pointing out handicap parking spaces.  She doesn't say much, which typically means she's processing. I'm waiting for the day when she starts asking questions, which should be soon, when she's ready. Last night, she asked why Kingsley can't pee and I explained where her spine was, where Kingsley's boo-boo was and how that means his spine doesn't tell his body to do some things. She found that very interesting. More thinking.


Now, if Rachel is in the other room and everything is quiet, it's a pretty safe bet that she's drawing or reading. If Cordelia is in the other room and everything is quiet, it's a pretty safe bet that you are going to regret that moment of quiet when you discover what she's done. Cordelia is almost 2 and a half years old. She is the two year old that I have heard about, but never experienced with Rachel.

(that's my mom freaking out to the right there. Cordelia was trying to copy Rachel hanging upside down, minus the hanging-on-with-the-legs part)

Cordelia jumps, climbs, runs, spills, pours, yells, rips, screams, body slams, knocks over, eats, dumps, and dances her way through life. If it's tied down, she'll untie it. If it's closed, she opens it. If you say no, she screams YES.  My dad says she's just like me. She loves music and has a killer bootie shake. She loves playing house, dolls, being near other kids, being outside and doing anything Rachel is doing.  They are best friends and best enemies. They go from giggling and hugging to hair pulling and screaming just like my sister and I would. ;)

There was a time when we were worried about Cordelia not talking much. The best way to describe her and Rachel's communication are those parody's of Lassie where the boy is able to understand entire stories through a couple of barks. Their conversations often sound like this:

C: MY!
R: Oh,  you want this doll that I have right here because you think it's yours?
C: YA!
R: Oh, you want to feed the baby and put her to sleep? You think she should be wearing pajama's because it's time for nigh-nigh's?
C: (confused look)
R: And then when she's asleep you want to ask Mommy if we can play computer games and play with the markers?
C: Yaaaah...
R: But you think Daddy won't let us play with markers because we left them out and you coloured on the wall and he got mad?
C: NO!
R: Well. Maybe you can tell Daddy that you promise you better not do that again and then he'll let us do it.
C: (snatches doll and runs away)


Cordelia is a firecracker, but there are a couple moments in every day that I absolutely love. When she first wakes up, if you can catch her before she pees in her pj's or tries to flip herself out out of the crib, she'll be half asleep and quiet and eager for cuddles while the last lingering bits of sleep are still on her mind. It can last anywhere between 10 seconds and 10 heavenly minutes, and then BAM - off she goes. The same is right before bed. She'll yell "BABY BOO-GA DEEP BOO SEEEEEEE!!!!" (translation: Baby beluga in the deep blue sea) until I pick her up, wrap her in her blanket and snuggle on the glider and sing to her while she buries her head on my shoulder and sucks her thumb.  There are many days where this is the last thing I feel like doing, but once I'm there, I'm always glad I did it. She's also exceptionally quiet and shy when we're out in public. She'll give people her shy smile as she hides her face in my leg, quiet as a mouse.  We go out a lot. ;)


Cordelia also catheterizes her dolls (through the belly button).  She LOVES to help out with Kingsley, which will probably embarrass them both one day. She pulls out his cathing kit and his diapers and has gotten everything all prepped and Kingsley stripped down before I've caught her. Poor Kingsley. She loves him sooooo much. Through Cordelia's love for Kingsley we realized he probably can't feel his feet and calves.  She thinks he's delicious, in the literal sense.

(see the teeth marks? no idea when it happened, but when asked Cordelia readily admitted that it was her)

The girls think Kingsley is a living doll. Even better, he responds to them. No one can make them laugh the way they can. I could do the exact same thing and he'll give me a snicker. They do it and he errupts into deep belly laughs, head thrown back like it's the best thing he's ever seen. His eyes light up when he sees them. He'll crane his neck, searching for them when he hears their voices. They entertain him better than any toy could ever.


I don't think at this point SB has negatively effected their lives in any way.  Kingsley is their baby brother.  They don't know that he's different than most babies. They don't care.


Tuesday, October 12, 2010

Six Degrees

Do you ever get freaked out about what a small world it is? 

The city we live in is freakishly small for being nearly half a million people, but now I'm discovering the internet is quite the same.

I found these video's that recently got turned into a blog. They make me LAUGH!!!  They're offensive and hilarious at the same time. Sadly, I don't know if I'm the blond or the brunette. I think that makes it even funnier. Mompetition

So, on that blog, there was a competition for a t-shirt made by another blogger. The name of the blog made me LOL, so I looked it up. Mama Wants Vodka

Well, wouldn't you know it? Aunt Becky, who writes Mama Wants Vodka, has a daughter with encephaloceles (another neural tube defect) and was contacted by the SBA to raise awareness for NTD's. http://www.mommywantsvodka.com/happier-than-a-tween-at-a-jonas-brothers-concert/ Wild. 

Us mama's are going to take over the world, I tell ya.

Monday, October 11, 2010

Happy Thanksgiving!

Holy moly, we've been busy. My niece, Kamille, came here for the week with my brother-in-law, Kevin. Kev was here on business and thought Kamille might like spending time with her cousins and grandparents. She did! We had a great week. Very busy.

We had a teddy bear picnic in the woods.


We made some Halloween cookies. The icing colour came out looking a little bit like cheese whiz. I promise, they didn't taste like it.


Kingsley got a lot of time in playing his favourite game: PEEKABOO! He loves it.


We played with Goop (cornstarch and water). The girls were a little unsure about it, but in the end it won them over.


We had some Teacup time. Of course.


We did a lot of tempting Kingsley to see if he'd be interested in moving around some more.  He's not that interested.  He is starting to twist to the side a bit though and reach for things beside him. All good.


We did find some time to relax.


And then made some more cookies.


Spent a lot of time outside because the weather has been GORGEOUS! A total Indian Summer.


And today is Thanksgiving Sunday. We went to a local farm to do festive things like a corn maze and pumpkin picking. It was so much fun! Kingsley slept through most of it, but the girls had a fabulous time.


As it is Thanksgiving, I feel like I should at least mention things that I am thankful for. However, the list is so long that I think if I started, there just wouldn't be enough space in the blogosphere for everything. Most noteably, Kingsley's health, my girls, my family, and all of you who have been through the past year with us. And my bed, which is where I should be right now. ;)

Monday, October 4, 2010

So...

When's the last time I mentioned what a rockstar Kingsley is? How about TODAY!!!

My niece is in town and she was over to play today.  While we were waiting for her other Grandma to come pick her up, I let Rachel put on her KidzBop video (FYI: don't ever watch this unless you want your ears to bleed).  Kamille saw our remote and said: "I used to have that remote, but my mommy had to give it back." HAHAHA!! Kristin has gone back to school and decided getting rid of cable might help her out. Anyway, I took a picture of how glued the kids were to the TV bc it made me LOL, especially Kamille.


Then I realized I had put Kingsley down facing the TV (I usually have him turned another way to save his precious brain cells) and thought his face was priceless as well, so I took a picture of that. Then I turned him into a vampire so you can't tell how stained my carpets are.


Why am I telling you this story? Why these pictures?  Well, because shortly after they were taken, Kamille was picked up, Cordelia got naked, I was trying to figure out dinner... typical chaos. And when I looked back at Kingsley to see why he wasn't complaining about being left there alone, I saw this:


Scroll back up. HOW DID HE GET TO THE LAUNDRY BASKET?!?  I couldn't believe it. I know I wouldn't have put him down beside the basket because he likes to roll and that would've meant him banging his head and all that unpleasantness. The only explanation: his sisters dragged him or he moved himself.

So, I set him up again and then lay down perpendicular to him, posed with my camera. Well, that didn't last long. Rachel started jumping on my back, Cordelia was still naked, dinner was cooking. I tried to keep coming back to the same spot, but I wasn't exact. I did make sure no one touched him. Here is what happened:


You can sort of see it - he moved!  Jeff came home and I set it up again with a shoe at his feet. After 10 minutes, the shoe was about 10cm behind him. I took a long boring video. I can't really tell how he does it. Sort of a combination of pulling his leg up and using the splint as leverage, then wiggles side to side, reaching out his arms.


For once, the stains on my carpet are in my favour. I had to  move the table because he was wiggling in to the leg, but if you see the stain by the waistline of his pants in the top and bottom, it moves!!  And, obviously, he was able to twist to the side to get the flyer.


I am just in awe. I can't believe he's moving himself. He just amazes me. I'm so proud, I could explode. Nothing is holding this kid back.

Sunday, October 3, 2010

Living

It's Spina Bifida Awareness month in the US this month. We do it in June around here, but I have no problem with the double dipping! In honour of that, folks from Spina Bifida Connection are doing a blog link to let the world know what living with SB is really like.

So, here goes.

Kingsley is now 8.5 months old. We found out about his SB when I was 21 weeks pregnant, which was 1 year and 2 weeks ago. Pregnancy was no peach, but it did give me a lot of time to grieve, read, google, freak out, and adjust to our new reality. Once Kingsley was born the panic, pain, and fear did not go away, but it was as if someone hit the Mute button. Occassionally, someone plays with the stereo and the volume will suddenly get turned up to high (like it did a few weeks back), but for the most part we are just aware that the stereo is on and no one is listening.


Kingsley has four diagnoses on paper: myelomeningocele spina bifida; hydrocephalus; Chiari II malformation; and neurogenic bowel/bladder. I joke that aside from the shunt, medicine, cathing, and therapy, Kingsley is just like any other baby.  People generally get a stunned look on their face as if those four things are so huge that he couldn't possibly be anything like another baby. They really aren't that big of a deal.

The shunt was once described by another SB mama as The Monster Under the Bed. A perfect description.  If you're awake at night, it'll haunt you, but during daylight hours, you can forget about it. We choose not to live in constant fear of a malfunction/infection/problem. It will likely happen sometime. We'll deal with it then. Until then, we measure his head every few weeks and occassionally when he's acting oddly, it might cross our mind.  Otherwise, his hair has grown over the scar and it's out of sight, out of mind.


King is on three meds as of yesterday, all related to his bowel/bladder.  I keep them with his diaper stuff and give it to him first thing in the morning and last thing before bed.  A lot of parents give their babies those Vitamin D drops. It's no different, just times three. Just like vitamins run out and you have to buy more, so do his meds.

Catheterizing was something that scared the bejeezus out of me when I was pregnant. No one wants to cath their kid on a daily basis, right?. Every mom/dad who does it though will repeat: It's not that big of a deal. It really isn't. I do it when I change his diaper (which all babies have done anyway) - in the morning, before lunch, after nap, and before bed.  It takes a bit longer than a regular diaper change, but that's about it.  After the first week, it gets easy. You can do it anytime, anywhere. I will admit, I hate doing it away from home. Public washrooms are a germy nightmare. I hate it. But, luckily with two little nappers, I generally need to be at home during the times he needs his business done.


And then there's therapy. We are a part of a home program that sends our therapist out to our home every 2 weeks, so that we don't have to go into the centre. She comes at a time that's convenient for us.  On my own, I do therapy with King every day.  Right now, we are working on: sitting independently, tummy time, manipulating toys, songs with actions (Paddycake)... basically all of the things you would be doing with any baby.  The only difference is that Kingsley doesn't make the gains at the same pace as another baby might. We work at it.

Kingsley also has more doctors appointments than my other two children. He sees a handful of specialists and we go to clinics at the children's centre a few times a year. The appointments aren't overly taxing. I'm fortunate to have family in the city who are always willing to help out with babysitting the girls while I take King where he needs to go.


Otherwise, Kingsley is an 8.5 month old baby.  He naps twice a day and doesn't sleep through the night. He has a fabulous belly laugh. He is still breastfed and loves being worn in a Mei Tai. He flirts shamelessly. He scrunches up his nose when he's really excited, just like his sisters do. He loves peek-a-boo, mini maraca's, getting scared, and raspberries blown on his belly.  He hates lying on his side, the vacuum, and getting his face washed. His sisters adore him. 

We all do.

Related Posts with Thumbnails