Showing posts with label birth. Show all posts
Showing posts with label birth. Show all posts

Tuesday, January 14, 2014

FOUR

Tomorrow, my little boy turns four years old.

Birthdays change when you are a mother. Birthdays become Birth Days. The anniversary brings vivid memories, sharp emotions, and overwhelming adoration for that baby that arrived. Birth Days really change a woman.


Two things have really consumed my thoughts leading up to this birthday. The first happened innocently: Rachel was doing the typical, "How old will I be when Cordelia is 15? ... How old will I be when Kingsley is 8? ... How old will I be..." And doing a quick math riddle in my head made me announce that next month Rachel would be exactly twice Kingsley's age. Pretty cool! Except then I started thinking about everything that happened in Rachel's first four years vs what happened in Kingsley's first four years. Namely: two more children vs no more children.

Then, my blogger friend Mary Evelyn wrote this beautiful piece on having another child after having a child with SB and some of her words felt like a punch in the stomach.


We had always hemmed and hawed about having four children. I have 6 stocking hooks that I bought when Cordelia was a baby, because we just didn't know. I joked about stopping at three, but if I'm being honest, I did anticipate caving to Jeff and going for four.

Four.

When I was pregnant with Kingsley, after we knew, when life was torn into shreds and I was flailing for anything to ground me, I swore that he was going to be the last. I couldn't go through that again. It wasn't anything to do with him or his diagnosis, it was the pregnancy and the feelings of total helplessness, hopelessness. I had never been so sad or so scared in my entire life.

When he approached the age that the girls were when I got the baby bug, I had other things on my mind. My son had just had his fourth surgery. We were just coming to terms with the fact that he was not going to walk and all of the implications of that reality. We were busy. My mind was on other things. As Dumbledore would say, "we had enough responsibility to be going on with."


And now time has passed. As Jeff likes to remind me that ship has sailed. The fourth baby has never happened. The fourth baby will never happen.

Sometimes, I am a little bit haunted by the thought Mary Evelyn had: Some decisions can only be made from a place of love-- not from a place of fear. Did I make my choice from a place of love or from a place of fear? 

I honestly don't know. 



When you have your first girl, people immediately ask when you will be trying for a boy.

When you have your second girl, people immediately ask when you will be trying for a boy.

When you have your third child and it's a boy, people ask if you're done. 

If that boy has a disability, no one asks, they just assume you're done. You're off the hook. 

If he had been my first child, I would have to be brave. I could not stop there, I would have to have more babies. My arms would not have been full enough with just one child. 


I don't know what the answer is. What I do know is that tomorrow, my little boy turns four years old. He is my favourite boy. He is my only boy.


Sunday, January 15, 2012

*TWO*

My sweet little boy turned two today.

TWO.

Two years ago he was born. I get so emotional when my children have birthdays. Remembering their births is so lovely, there just aren't words for how it feels to bring a child into the world. It's magical. Kingsley's birth was no exception, but since I've gone on and on about his birth day at various times, I will spare you today. ;)


I know it's kind of cheesy to say that I'm inspired by my own son, but I truly am. He doesn't do anything that any other kid doesn't do. He just goes about his days, his weeks, his year learning, trying, playing and developing. But when Kingsley does it, he's defying odds. 


I cannot even begin to count the number of times this year I have been reminded of the brilliant words my friend, Cassie said about her own son, Caleb: I've seen him do things I didn't think he would ever do. So many moments this year, I have seen Kingsley do things that amaze me. Things that I wasn't sure he would ever do. Things that if you told me one year ago today: this is the year Kingsley will do THIS, I would probably have doubted you.


This year, Kingsley showed us for the fourth time that he is a fighter. That he will bounce back. That he will continue to be resilient. He learnt to play. He learnt to hold his own cup. He learnt to hold a spoon (although, he did also learn to throw it instead of use it to eat. Baby steps). He learnt to eat. I forget that a year ago he was barely eating solid foods at all, nevermind finger foods, that he didn't even start eating solid food on a regular basis until the spring and that I still have a cupboard shelf full of baby food because he only just stopped eating it a couple of months ago. He learnt to communicate with us... in ways other than words, but he does get his point across! He learnt to sleep through the night - ALLELUIA!!  He learnt to roll over both ways (again). With support, he got up on his feet for the first time.


This year, Kingsley learnt to MOVE. His world grew exponentially at the end of the summer when he learnt to make his Bumbobile GO. And then his dynamic stander. And then his wheelchair. And then his body as he learnt to roll and twist and wiggle and finally crawl. Alongside all of the moving, Kingsley also learnt to sit. On his own, on the floor, with his hands up, playing, reaching, clapping, slipping into an Elmo's World coma.

It has been a big year for my little rockstar.


Yesterday, we had a little party to celebrate the big year that he has had. He was not that impressed. He cried, a lot. Covered his ears, his eyes, whined, and then finally accepted that no one was leaving and so joined in the festivities. What else are you going to do when you're already all dressed up, right?


Besides, there were presents. Can't be grouchy when there are presents. 


Right beside him, cheering him on every step of the way, were his two bestest friends and biggest fans:



We did it all over again today, because that's just what you do when you're two.




 Kingsley's second year was incredible. It was not without heartache, frustration, and impatience, but those things were so overwhelmed by the joy, excitement, and pride at the incredible kid Kingsley developed into this year.

I am so excited to see where he goes in this next year.

Happy Birthday, Kingsley!!

We love you so much!

Saturday, October 1, 2011

Awareness Month Deja Vu

Hello, welcome to October! Otherwise known as Spina Bifida Awareness month for the USA. We live in Canada and ours is in June, so I posted about it then. Instead of repeating, I'm going to repost. You can say that is lazy or you can say that I was so brilliant the first time that there is no topping it. ;)

I'll pretend you're agreeing with the second option.

I like to let people know what living with SB is really like. Not just the bad stuff, not just the good stuff. I don't want to gloss over anything because it's ugly and I also don't want to make it seem like it's horrible because mostly things are just pretty awesome.

Things weren't always so awesome though. Here is what it feels like to get the diagnosis for your baby: http://thelittlekingsley.blogspot.com/2009/09/diagnosis.html  In a nutshell, it's horrible.

And then he's born and the whole world becomes full of rainbows and sunshine! http://thelittlekingsley.blogspot.com/2010/01/hes-here.html


The rainbows fade with the lovely drugs, unfortunately. The post-birth hospital stay is one long rollercoaster, but the end is worth it because you get to go home and start your life. http://thelittlekingsley.blogspot.com/2010/02/kingsleys-video.html

And then you live.

You have good days http://thelittlekingsley.blogspot.com/2010/06/rockstar.html  and bad days http://thelittlekingsley.blogspot.com/2010/06/stop-ride.html and sometimes even worse days http://thelittlekingsley.blogspot.com/2010/09/heavy.html


You go on vacation (imagine that!) http://thelittlekingsley.blogspot.com/2010/06/kingsleys-first-vaca.html Yikes http://thelittlekingsley.blogspot.com/2010/08/three-kids-three-days.html 

You live http://thelittlekingsley.blogspot.com/2010/10/living.html


Your other children continue to live http://thelittlekingsley.blogspot.com/2010/10/spidipida.html


You have blips http://thelittlekingsley.blogspot.com/2010/12/kingsleys-decompression-with-music.html

But when you look at your child, you still believe you are the luckiest person in the world, because they are yours http://thelittlekingsley.blogspot.com/2011/05/best-case-scenario.html


This is what it's really like to live with a child with SB http://thelittlekingsley.blogspot.com/2011/06/living-part-2.html






Friday, September 2, 2011

Just Like Hallmark...

Well, I'm honestly not dwelling on it, but yesterday was two years since I sat in my midwife's office and watched her circle the 1:5 SPINA BIFIDA over and over as she reassured me that it was going to be just fine. Two years since I sat sobbing in my car, scaring poor Jeff when he answered the phone and I could hardly speak the words. Two years since I sat there knowing, as only a mother can, that my little baby was a boy and that this really was going to be happening to us. It's a very real memory for me and I can feel the pain as real as that day, but I don't have the ache anymore like I did then. I know this story has a happy ending, you see.

Anyway, another SB mama passed this on to me a few days ago and I finally got around to watching it which is what made me actually think about yesterday's date and where I was two years ago.  There really is a song for every occasion, isn't there?  I wish all parents who have those anniversary dates have endings like this and like ours. Not all of them do though and that is something that has become more real to me this year.

Grab a tissue first.

http://www.youtube.com/watch?v=DJOSMB0QhFY&feature=share

Sunday, May 8, 2011

The People Who Made Me

My Mom and Me ~ March 9, 1978

 Rachel Renee ~ March 19, 2006

Cordelia Capri ~ May 20, 2008

Kingsley Kieran ~ January 15, 2010

These four people have made me the mother that I am today and for that, I am so grateful. 
I simply love being a mother.

Happy Mother's Day!

Wednesday, March 2, 2011

What Not to Ask

My dearest friend emailed me after my last blog post to ask about what was and was not okay to ask a mom regarding her children.  Oh boy, where do I begin? ;)  No, I'm kidding. There are a lot of things that people say or ask that are just small talk and mean no harm by them and we all know that.  They are seemingly innocent questions, but if you stop and think about it, they are some pretty weird things for a perfect stranger to be asking. Whether it's someone you've never laid eyes on or someone you casually know, there are some things better left unasked. I'll also preface by saying that most of these things are just fine to ask someone you actually know and talk to on a regular basis or have known forever.  Except the last one.

As for the rest of the questions, let us back up a bit because we all know they start far before childhood.

1. When are you getting married?
If someone has been dating someone for a long time, try to resist the urge to ask when they will be getting married unless there is a ring on one of their fingers. Jeff and I dated for four years before we got engaged. I had to endure that question for the better part of three years. It got tedious. And these days, not everyone gets married or even wants to. If you are actually involved in these people's lives, try something more like, "Are you guys thinking of getting married?" where the implication is not that you should be running to the alter, but will essentially get you the information you're so eagerly trying to get at. If you are just making idle small talk, bite your tongue entirely.

2. When are you having kids?
In our wedding guest book no less than six people referenced the need to begin breeding immediately. I kid you not, people started staring at my abdomen the next day in hopes of being the first to declare that they just KNEW I was pregnant before I announced it. For us, we had no trouble conceiving and carrying children, but this is not always the case. It must sting something awful to be asked this and not have an answer.  Also, as I'm sure my sister-in-law would attest to, if you have no plans for children then this question would probably get annoying. As with most of these questions, this one is not one to throw down with someone you don't actually know in hopes of making small talk. You might get an earful. If you're at least on a first name basis, you could try: "Are you thinking about having kids? Do you guys want to have kids?"  Those with fertility issues are welcome to chime in and let me know if that's even okay.

3. Pregnancy Questions
The above question is often followed closely with the heavily loaded: "Are you pregnant/When are you due?"  I don't care if you're 9 months pregnant and in obvious labour, until I see that head crowning, I'm not going to ask until you say something. I've heard too many horror stories!  Once someone is pregnant, people love to comment on the belly size. You pretty much can't win here. Either the woman is a whale and doesn't need you to remind her, or she's small/not showing and possibly self-conscious about it. Just placate the poor preggo and use the handy lies: "You're glowing!" "Pregnancy looks great on you!" and my personal favourite: "You're all belly!" Even though I know you're lying, I appreciate the effort. ;) Oh, one more dangerous comment - it's around the time of her due date, don't say: "You haven't had that baby yet??" because the answer is either obviously NO and she might ram her swollen fist in your face and blame it on hormonal rage, or the answer is YES and she might ram her swollen fist in your face and blame it on hormonal rage. Hormones are not a friendly thing. Belly rubbing is also a risky thing to do. I don't mind, but I know other women who consider it a huge no-no and might reach out and rub your (non-preggo) belly in return.

My other least favourite pregnancy related thing to say is: "... as long as they're healthy," as in, "Doesn't matter if it's a boy or girl, as long as they're healthy, right?" Define 'healthy,' folks. This is doubly dangerous since it usually coincides with the anatomy scan where you find out the gender and/or the overall state of development, or in other words, this is when you'll be finding out if something is not going according to plan. I can't even count how many times people said this to me, people who I wasn't interested in sharing the news about King's diagnosis to. I know it's just one of those random things people say, but if you think about it, sometimes it doesn't even matter if they're 'healthy' (and for the record, Kingsley was very healthy when he was born. Just had a pesky hole in his back).

4. When are you having another one?
Same as above. This started when Rachel was about 7 days old. It could be because I was on a hormone high and probably was singing about having 10 children still. When the drugs fully wore off, I stopped that tune, but the question kept coming. Are you pregnant? Are you pregnant? Are you pregnant? Stop watching what I'm eating/drinking. When I want to tell you, I will tell you. Until then, zip it. Second children are sometimes hard to create, if they're desired at all. Not everyone HAS to have a bunch of kids. Luckily, this seems to die off once: 1. you have one child of each gender, 2. you have 3 children, as clearly you would be insane to keep having kids after 3. I'm told that when children are close in age, there is also the question: "Was that on purpose?" that comes up a lot. Apparently no sane person would have kids under 2 years apart, so it imperative that you tell everyone about your blunders with birth control. It is their business to know, after all.

5. Are you going to try for a boy/girl?
Yes, clearly my life would not be complete unless I had a child of each gender. That would be my sole reason for continuing to procreate. Damn all these pesky girls I keep producing... I just want a BOY!!  Yes, there are people that really do want a child of each/the other gender, but there's an implication that the second/third/fifteenth of the first gender is going to be sub-par because they are not the other kind and that's just ridiculous. For what it's worth, I would've been happy with 10 girls. Probably would've been praying that #11 was a girl if I had 10 boys though. ;)

6. Are you breastfeeding?
Why oh why do little old ladies love to ask this question? My answer is yes, but it's always a little bit awkward and I am often tempted to say no just to see what they would say. I'm also tempted to ask if they're eating enough fibre or something equally none of my business. Again, this can be one of those sensitive areas because many mothers want/try to breastfeed but for whatever reason they cannot/did not and really don't need to justify that to you.

7. Are you STILL breastfeeding?
This begins when they're about 4-6 months old, along with the averted eyes. Seems the little old ladies like you to breastfeed, but not THAT much.  It's right up there with, "Why don't you just feed them food?"  Now, to be fair, before I had Rachel I had absolutely zero idea how long you fed a baby or what you fed them. I recall thinking that I would breastfeed her until she was 6 months old and then switch to baby food. Har har. Turns out, you introduce baby food at about 6 months old (or 4-6 depending on the child and your preference), but you have to keep either formula or breastmilk as their main source of nutrition until over a year old. The World Health Organization recommends breastfeeding until 2 years old. Not everyone does this, but try not to make your shudder obvious if you see someone breastfeeding a toddler. It's okay. It's even good for them!

8. Is s/he a good baby?
Nope, she's a freakin NIGHTMARE! Spawn of Satan! Take this baby AWAY from me!!
Really, how is a mother supposed to respond to this?

9. The milestone questions
Is she sleeping through the night?  Is he sitting up?  Is she crawling/standing/cruising/walking/talking...?
These questions don't bother me. They are generally pretty safe small talk, so long as you are in the ballpark for when they usually happen. You may get an earful on the sleeping through the night thing, so if the mother is carrying an extra large caffeinated beverage, you can probably assume the answer is no and skip that one.  Most moms love the opportunity to brag about the wonderful things their children are doing, so any interest in the little ones abilities is usually okay. If you get a short 'no' response, then move on.

10. What's wrong with him?
Oh, where do I begin? The short answer: Nothing. The long answer: Nothing. We mothers are a wee bit sensitive when it comes to our kids. 'Wrong' implies that you can somehow make things 'right'. Nothing I do can change Kingsley, he was born this way. He is the way he is supposed to be, therefore, there is nothing wrong with him. If you're under the age of 12, I will easily ignore the implications of asking if something is wrong; if you're older than that, I would expect a little sensitivity when it comes to your choice in words. I don't know the correct way to ask what the deal is with a kid who has an obvious disability or diagnosis or whatever. The more specific questions like: "Why does he have that on his foot?" or "Why is he going to be in a wheelchair?" do not bother me in the slightest. I have seen other kids in AFO's/wheelchairs and have ached to ask (but I'm shy). I also had someone once ask, "What's Kingsley's story?" which was a good alternative, in my mind. I'm sure I'll get a lot more questions like this in the future, but for now, that's all I've heard.

11. Did you take folic acid?
You know I had to add this one! I'm sure there are equivalent ones for kids with other diagnoses that annoy other parents as well.  Really, it's a disguised way of asking: "Was this your fault and do you know that it was your fault?" If it is my fault that Kingsley has SB, I don't know it. But even if I did know what caused him to have an open NTD, it's irrelevant to any conversation I will likely ever have, other than with a shrink or a fertility doctor. If you are neither, do not ask this question.

So, there. That's my little list of loaded questions. Ask at your own risk. They won't apply to everyone, obviously, and if you find yourself asking one of them, don't sweat it, it's not actually that big of a deal. The funny thing is, I think mom's are probably most guilty of asking other women these things. I have heard the words: "When are you guys having ki..... crap." come out of my mouth more times than I can count. I don't know why I say it, it's like a compulsion. I inwardly groan every single time.

As for Kingsley-specific questions, I don't think I've ever been bothered by one coming from someone I know or who knows about his diagnosis (other than #11).  I have no problem talking about him or his diagnosis or what it means for him. Probably better to ask than assume.

Thursday, February 10, 2011

The Study

Bzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz...

Hear that? It's a community of SB folks all buzzing about the Big News.

It is big news, huge, collosal, big news. There was a study that came out that was nearly a decade in the works. It's been discussed and disected and speculated on, but now there is evidence, there are results, and there is print. http://www.nejm.org/doi/pdf/10.1056/NEJMoa1014379

The question was this: if damage to the spinal cord and development of Chiari and hydrocephalus all worsened throughout a pregnancy, what would happen if the back was closed while still in utero?  It sounds almost too far fetched to be real. I remember first reading about it and being just speechless. Dumbfounded. How could that even be possible? But it is. They slice the mom open, take out the uterus, cut it open, find the baby's back, do the closure, sew up the uterus, tuck it back in, sew up the mom and cross their fingers for the next few months.

I am in AWE of the doctors and nurses doing these surgeries, I am in awe of the 183 women who agreed to participate in the study.

We were not given the choice to participate. You have to be living in the United States and we aren't. Naturally though, we wondered about what we would choose if we did have the choice.  I have no idea. I'm inclined to think that we wouldn't, but that just seems like the easiest choice.

The results of the study, if you haven't heard, are that children who have the prenatal surgery are less likely to need a shunt for hydrocephalus and less likely to need supports to walk.  There are other details, but those are the take-home points. The surgery is not without it's own problems though. There is a very high risk of preterm labour and birth, as well as some complications for the mother (which I'm sure most moms would brush off at the opportunity to help their child). 

There is so much talk about the study today. So many regrets, so many What If's, so much reflection on and pride in what choices we did or did not make. I can't look back with regret and I don't really have any interest in wondering What If...  We (those of us with SB kids age 0-7ish) are a unique group in history. We will be the group that wonders. Before us, it wasn't even something to consider.  Our group didn't have any evidence that it would help and yet some took a huge leap of faith anyway. From now on, there will be more informed decision making. A new generation to come.

I guess that's why I'm so unsettled by the study. It brings up the uncomfortable feelings about the implications of prenatal diagnoses.  I keep hearing that it's a great thing for getting diagnosed prenatally - that maybe women will choose this over termination. I don't see it that way. If anything, it is now offering women three choices: terminate your pregnancy; drop your life for 4 months and move to one of the big cities and go through the surgery to give your baby the best chance; continue with your pregnancy and your life and deal with it when the baby is born, always wondering What If.  How realistic is it to think that any random woman who receives the diagnosis for their baby is going to be able to participate? I can't imagine having to leave work when I found out (wouldn't have qualified for EI then), leave my children, leave my husband, deal with the financial side of not working and not living at home, and go through that in Toronto even, and I have amazing supports! I feel like women may now think: Well I can't give them the best chance, so better to go with no chance. That makes me sad.

It's all moving in the right direction though, don't get me wrong. Part of me is sad that it's a huge research success that Kingsley will not benefit from. The other part of me recognizes that it can open the doors for so much more attention, research, and answers to all of this SB stuff. I remember googling and hesitantly asking both our neurosurgeon and OB if there was ANYTHING I could do for him - take more folic acid, go on bed rest, stand on my head, just throw me a bone! The feeling of helplessness is overwhelming, knowing that your baby is inside you possibly becoming more impacted by the diagnosis on a daily basis and there is nothing you can do about it. I am so happy that some women won't have to feel that way, that someone will be able to look at them and say yes, there is something you can do.

So, there. Those are my own rambly thoughts on the subject. This is Kingsley's Serious Face for the Serious Topic. ;)

Tuesday, January 18, 2011

Kingsley's First Year

Every birthday since Rachel turned one I have made a photo montage of the year.  They haven't always been finished anywhere near the actual birthday so this is something of a record! I love being able to look back over the whole year and see the changes that have happened in their little lives. Kingsley is no exception - his growth and development (and cuteness) is fascinating to me. My little rockstar continues to live up to his name.

Saturday, January 15, 2011

Birthday

For the past four months I've been reliving what I went through the year before. Anniversaries of sadness and grief. The day we first heard the S B words. The day we were told he was fine. The day we were told he was not fine. The arguments over his birth. The planning for his birth. The ultrasounds. The doctors and specialists and nurses. The big scare when we though he was coming early. The last days. The fear. The dread. The hope.

Today is the last of the anniversary days. The day the clouds lifted.

The day I met my little boy.
 And fell hopelessly in love.

It was love at first sight. :)


It was a strange thing to remember the day. An unbelievable amount of living was crammed into 24 hours that day.  I was slow. I was distracted. I forgot the time of my last OB appointment and had missed it. I was frantic and frustrated with myself (... and still wondering if baby brain will ever go away??).  Then I got there and lay down and saw my little man on the u/s screen for the last time.  Relaxed. Nothing else to do that day except sit and wait for them to fit me in with my OB.  It was mid-morning. I was in the waiting room in the hospital on the third floor. I was so uncomfortable.

I saw someone I knew.  We sat and chatted about babies and life. I talked to her, but the whole time my mind was racing. I wasn't just uncomfortable, I was having contractions. We kept chatting. I subtly looked at my watch. Regular contractions.

I have never been afraid of labour, not even with Rachel. With my first two babies, the same sort of calm came over me when I realized this was The Day. There was no thinking ahead. There was no panic. Just the calm knowledge that my body was doing what it was doing.  With Kingsley, there was a hefty dose of denial mixed in with that calm. I tried to convince the resident that she most definitely did not need to check to see if I was dilated. My OB came in and announced that today was indeed the day. I was shocked. Why was I shocked?  LOL! I had been having regular contractions for nearly 2 hours, the news that he would be born that day should not have been a shock.

Then came the phone calls. It was lunch time. I was worried about tracking down Jeff. The planning. The list of things to put in my bag (I thought I had all weekend to pack!). The assurances that I was fine to drive across the city to the other hospital. I got there. Still a bit of denial, but mostly that calm again. Things were out of my control.

Hours passing. Waiting and talking. Lots of people talking to me about what would be happening. About what was happening. Yeah, yeah, yeah, blah blah, I'm meeting my boy today.  I wished that I had done my hair. It's strange, the thoughts that go through your head.


His birthday party started today at 2:30. This ^ picture was taken at 2:30.

At 3:00pm, my OB arrived and asked if I was ready. We went down to the OR.

At 3:58pm, my angel was born. At 3:58pm, I was sitting on the floor in the playroom watching 6 kids play Pass the Parcel.

The party ended at 4:30 and people were slow to leave. At 5pm, people were lingering. Last year, this guy was lingering...
They brought him back to my recovery room after I was done. It was blissful. He was gorgeous. I couldn't drink him in fast enough.

Time blurred after he left. Just waiting to go see him again. Tonight, time blurred. I recall telling Rachel and Cordelia that dinner was the leftover apps and whatnot that were leftover from the party. Go ahead. Eat until you're full. I cleaned. I tried to settle my overwhelmed and exhausted birthday boy. Rachel ate until she threw up, which upset Cordelia so much she peed her pants. I can't make this stuff up.

About the time things calmed down here was about the time I was reunited with my angel last year. Then he got the call for surgery and was taken away. Jeff and I went back to my room and announced to the world that our baby boy had arrived. We were so euphoric, so in love, so happy. The time flew, and then his surgeon was there telling us we could go down and see him again.

I barely slept that night. I was so itchy from the drugs, but wouldn't take Benadryl because it makes me drowsy and I was afraid I'd miss something. I lay there in my hospital bed wide awake with my eyes closed, seeing his beautiful face behind my eye lids, remembering every inch of his body. I could not wait for daylight so that I could get back to him.

Last year, we were happy.

This year, (is it possible?) we are happier.
(and I did my hair)

We have so many anniversaries to come. 

Tomorrow is the anniversary of the first day I held my little angel. 

Tuesday is his shunt-iversary, a very rough day to have gone through.  

Then there is the anniversary of him coming home. 

The days of doom are over. Any anniversary we have now is exponentially better because he is here. Good days, bad days, good news, bad news. All is doable with his beautiful face in front of us. 

At one year old, Kingsley is happy....
(and smart! See? He's holding up 1 finger to tell you how old he is now.)
  

 He's healthy...
(and a bit too healthy, if you ask me. he refused to actually eat his cupcake. too much butter and sugar.)


He's beautiful....

And thriving....

Happy Birthday, Kingsley!  We are looking forward to a lifetime of wonderful birthday memories with our favourite little boy. WE LOVE YOU!!!

Friday, January 14, 2011

Angels Among Us

If this journey we've been on for the last 16 month has taught me anything, it is that there are people placed in your life at times that are so perfect, it can only be because they are part angel.

It started with my OB. I had no idea how to choose an OB when I got pregnant with Rachel. My friend Lindsay told me to go with this one that she knew through school/work (Lindsay also told me once up on a time to keep my eyes out for this cute guy named Jeff that I would be working with, so she has golden angel wings for sure ;)). Not knowing any different, I requested her. She was a high risk OB, just starting out at the hospital I wanted and she needed to build up her practice by taking on 'regular' pregnant women. Rachel was the first baby born under her care here.

I went back to her for Cordelia because she said I could. When I got pregnant with Kingsley, I had decided to try out a midwife.  When Jeff and I were going down for the level 2 ultrasound that would end up diagnosing Kingsley's SB, I bumped into my OB in the hallway. She shared an office with the doctor we had been referred to for the u/s and saw my file and she was also friends with my MW. She said to me: "If you get some news today, I would be happy to take you in my care again."  Later on, the OB we who consulted with us told me: "If you want to continue with the pregnancy, you can come under my care."  The difference is small, but spoke volumes to me. I went with my original OB and I could not have survived my pregnancy without her support and care. She was everything we needed and then some.

One year ago today, I met another angel. She is the mother of a little girl with SB and we had been emailing back and forth for weeks. I finally got up the nerve to meet with her. We spent hours pouring over her pictures of her baby girl, talking about our fears and her celebrations with her sweet girl. She told me every detail of her hospital stay and told me exactly what to expect. Our baby's would have the same surgeons, in the same hospital. She told me about how she had had her c/s booked, but had gone into labour a couple days early. The next day, I went into labour 3 days before my planned c/s date, but I was prepared.

This past autumn, I met my second SB mom.  She introduced me to her son and told me about how he had a posterior fossa decompression when he was 4 months old. A few short weeks later, I was sending her a frantic message after receiving the news that Kingsley would be having the same surgery with the same surgeon.  She was able to prepare us in ways that no doctor could and was an amazing source of support through the whole thing. (thank you thank you thank you!!!)

And then, as if I needed more evidence of angels around us, on Kingsley's first night in the PCCU after having his surgery, his nurse told me that we should go home and sleep. I was so torn. I had no idea how I was going to leave my baby boy after he had just gone through such an ordeal. The nurse then causally mentioned that he knew a boy with SB and had known his mother since they were kids - it was the same family we had just met. It was as if someone had just whispered in my ear: See? I got this one. It's going to be alright.


There have been so many other people this year that have done things I can't even being to thank them for. When we get bad news and more bad news,  when we get good news, and more good news, we have an army of people standing ready to send out love and support to us.  How could we have possibly made it through this year without all of you?

As a mom of a child with SB, I am often told that I am strong. I don't know whether or not it's true. Most days it just feels like I'm lucky to have so many angels around me, holding me up.

 This angel most of all.

Saturday, January 1, 2011

The Year in Review... How Cliche ;)

I'm so nostalgic. Usually, New Years Eve is blah for me. I gave up on caring about what to do and what to wear about 10 years ago. So overrated.

But this year is so different. I keep thinking back to the past year and feeling the need to celebrate. To toast what a year it was. Amazing, challenging, heart wrenching, and fantastic. I feel like after nearly 5 years, I'm only now really learning how to be a mother. I appreciate the little things like I never have before. Nothing is taken for granted. Although it feels like everything this year has revolved around Kingsley, that's not really the case. It's definitely revolved around my family, all of us. We've all grown and changed and become so much closer. I adore my little family. I think I may look back on this year as one of the most influential in my life.

Here are the most memorable events:

JANUARY: Well, no question, it was Kingsley's arrival. His diagnosis rocked me in 2009 and his birth just changed everything. He filled the void in our family that we didn't even know was missing (I am just full of cliche's, forgive me!).  He completed us and made us better by showing us his strength and beauty. I didn't know the true meaning of the word AMAZE until I met my little King.

FEBRUARY: this may seem strange, considering January's highlight, but the Olympics were the best part of February. I have never been more proud of my country or of being a Canadian. There was something so unifying about the Games. Everyone was watching. Everyone was cheering. Everyone was singing. I get teary just thinking about it!

MARCH: this month will always be for my first baby, my lovely Rachel. She turned four years old in March and seemed to turn into a little lady before my eyes. She has grown so much this year and the pride I have for her is unbelievable. This month also marked a new milestone for me as a mother: my first experience with the flu. That was disgusting. I am not a puker and prior to March, my girls had not been pukers either, so my experience with this sort of thing was limited. One night of Jeff, Rachel, and Cordelia taking turns throwing up every 15 minutes was one night too many. By some miracle, Kingsley and I avoided getting sick. So. Gross.

APRIL: I feel like April was when I really resolved and accepted a lot of things within myself regarding Kingsley's diagnosis and the previous year. At three months old, I finally felt like I could relax and just breathe. My baby boy was doing fine, the weather was shifting, life was awesome.

MAY: When I think of May, I think of being outside with my three little angels. How heavenly! We spent so many warm days out in the backyard, I thought that was how our whole summer would be. I also started running and moving on from my c-section. My sweet little Cordelia turned two years old.  It was a great month that I wanted to last forever. Sadly, (or not, depending on your preference), the weather shifted the next month and got unbearably hot and we spent a lot of the summer inside avoiding the humidity. :) Gotta love Ontario!

JUNE: My sister came home! And brought my two little nieces with her. I miss seeing them grow up in front of me, so I cherish any visit we have. The cousins love spending time together. We has a whole week at the beach, which is something we definitely have to make an annual event.

JULY: Kingsley was baptized! We had HVPI coming regularly by then, it was very hot, Rachel took swimming lessons and Kingsley started solid food. I started toilet training with Cordelia, so I think that pretty much consumed us.

AUGUST: Another month of heat. We had a disastrous three days in Toronto.  :) Kingsley had stopped progressing physically this point and I started to realize it.

SEPTEMBER: Rachel started school! September seems to be a rotten month for me. We had the anniversary of King's diagnosis commemorated with finding out that he was not going to walk and no one could provide us with answers as to why he wasn't doing more with his legs. Not a gold-star month around here.

OCTOBER: the highlight was my niece Kamille coming to visit! Cordelia, Kingsley and I were doing playgroups and support groups and swimming lessons and I was trying to figure out what was going on with Kingsley - torn between accepting and fighting.  Luckily, I chose the latter. Halloween was a ton of fun with my little girls.

NOVEMBER: Answers! Surgery! And the start of our Christmas season.

December: All fantastic-ness. Kingsley came home, the girls were SO into the Holidays, time with family and friends and just so much joy.

What a year, indeed. I love that it started and ended so well and that in between, there was a lot of laughing, snuggling, tickling, and smiling.
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