Showing posts with label pregnancy. Show all posts
Showing posts with label pregnancy. 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, September 15, 2013

If I Had Known

If I had known what life was going to be like right now, four years after we were told about Kingsley's diagnosis, I wonder if I would have reacted differently. Would I have gotten so upset if I knew how much he would laugh? If I had known how little his sisters would care about any of it, would I have worried so much? If I had known about the surgeries and the wheelchair, would it have made me feel worse? Maybe the way he loves to snuggle and his incredible independence would have negated some of the ache.

Jeff said today that this wasn't the kind of anniversary he remembered. I told him it's not the kind of anniversary I can forget.


But if I had known about how strong he hugs;

about how sweet his breath still smells, even though he's not a baby anymore;

about how funny he thinks he is;

about how much attitude he can give you when he's mad;

about how sweet his little voice is;

about how much he loves being read to;

about how much he loves trains and buses and trucks;

about how deep his belly laugh is;

about how he knows everything a 3 year old is supposed to know;

about how our life is still pretty awesome;

about how much we don't care about his wheelchair or any of it.


If we had known how much we would love him, anyway, in spite of it, because of it, regardless of it, not thinking about it, not caring about it, when we're immersed in it, when we don't even think about it... I think it would have been easier. It was easy to look at those doctors and tell them we didn't care, to walk out of there, to not look back. It was not easy to keep breathing after that. Had I known, it would've been.

Friday, September 28, 2012

The Things I Wanted to Say...

So give me hope in the darkness that I will see the light
Cause oh they gave me such a fright
But I will hold on with all of my might
Just promise me we'll be alright
~ Ghosts that we Knew, Mumford & Sons

This week was Meet the Teacher night at the girls' school. Since they're going to school at the other end of the city by our soon-to-be-house, it didn't make sense to go all the way back home between, so we headed over to the closest library to hang out.

In the kids section of the library, my kids moved in like they were at home. Chairs were moved so Kingsley could get up to the table with the toys, Rachel sat down to see what computer games they had, Cordelia broke out the puzzles. There was another family there. A woman, her two daughters that were also playing with toys, and her two sons that were in and out of the shelves of books. They saw the wheels. I heard them asking their mom, pointing to him, sneaking peeks at me out of the corner of their eyes to see if I had heard them asking. I heard her answering, saying the usual things, telling them it was okay. I saw her hesitate for a second, then come over.

She asked me if he belonged to me. Nodded when I said he was. She said something about him, then rubbed her belly as only a pregnant woman can and told me that the baby she was carrying only has half of a heart. I wish I could describe her face as she said it. She was trying to be casual, just making conversation with a total stranger, but we both knew there was nothing casual about it. I could see the fear in her eyes. The pain she was feeling, but trying not to feel. I could see the tears that were always just almost there. I could see the intense bravery, the sheer will to be stronger than she actually felt.

I could feel the sigh leave me. In that moment, right there, I was back to that place where I sat three years ago. Back with the eyes that never smiled, the thoughts that were always somewhere else, the heart that was just a little bit broken.

We sat there and talked while our kids came and went, my three and her four. She told me about the surgeries her baby girl would be facing when she was born, all of the appointments she had, her worries about the other kids, her concern that she wouldn't be able to breastfeed, and the unthinkable fear that her little girl might not make it.

Her journey isn't the same as ours. They're facing longer hospital stays than us, separations that we didn't have to endure, long term issues that are different. But what we had in common was that last joyless pregnancy that we will never get back, the ache that feels like it will never go away, the dread of the unknown, and the simultaneous wish to just stay pregnant forever so that we don't have to face what comes next.

As we rounded up our kids and headed on to the evenings next events, she apologized for unloading all of it on me, said she was just glad to finally talk to someone who had been there and gotten to the other side. She looked at me, at Kingsley, at my girls and her face was full of that desperate hope that maybe, just maybe, this wouldn't be as bad as she secretly believed it was going to be. I had so many things I wanted to tell her. I wished so badly to sit there and take some of the burden off of her. I can take it. I have the benefit of hindsight to know that where she's at now is not where she's going to stay.

If I could've, I would've repeated to her the slogan of the SB world: pregnancy is the hardest part.  I would've made her remember the joy she felt when her other four babies were born and promised her that this birth would be just as joyful, that she really would love this child that much, even if right now she doesn't feel like it'll be the same. I would promise her that she will bond with this baby girl, even if she can't be with her as much as she wants to be. I also would have told her that although the dark cloud of pregnancy goes away, the hard part won't be over and for that reason, she has to learn to be selfish. Get through. She has to get through the hospital phase and she has to get through in one piece, and to do that she'll need to put herself ahead of everyone else. She'll have to demand help, demand sleep, demand support, raise that white flag and call in the troops because there is no possible way that she'll get through that part on her own. There will be epic highs and epic lows, not only because life will literally be hanging in the balance, but also because she'll be a hormonal disaster, let's just be honest about that.


I would also tell her that when she gets through the next year, she'll look back in amazement. She will feel humbled by all that she has seen and done and she will never see life the same way again. She will go through times where she feels like the worst mother in the world, where she wonders how her other children managed to survive with a mother who is so incompetent. She'll also go through times where she'll look at her children and secretly gloat that her friends wouldn't stand a chance against her in a Mom of the Year competition. She'll have times where she pleads for just one day without extras and other days where the extras are so routine that they don't seem like extras at all. She'll see the beauty in a normal day, where nothing happens and no one does anything exceptional. She'll begin to celebrate the most mundane of milestones and finally see them for the incredible gift that they are.

And before she knows it, she'll find herself sitting somewhere while her awesome kids are just being awesome kids and she'll come face to face with her old, scared, terrified, brave, wonderful self from three years ago and she'll realize that thing that someone told her three years ago is true: she's okay. She will still be watching awesome reality TV every other night, still be a slave to her laptop, still be staying up later than she should be, still lusting after boots, and still eating too much candy. She won't have lost who she is and her life will have kept on going. Her broken heart will be repaired, just like her baby girl's.




Monday, March 19, 2012

It's Not That Bad

I think I have written and rewritten this post a half dozen times in the last few months. Things keep popping up in the media that make me feel like I have to speak up but the words aren't coming out right. There is far too much emotion attached to this one.

Life is random. The mantra we are fed as children gets repeated endlessly: life is not fair. Indeed it is not, nor is motherhood. There is no fairness in some women's ability to conceive children while others cannot. The sweet, angelic babies are not doled out to the single women with no support system, nor are the high needs colicky babies reserved for the most patient new moms with eager grandparents near by and a supportive partner. There is often no rhyme or reason to children who do not get to live long. Babies with disabilities or diseases are not given only to parents who are strong and who can handle it. We did not ask for it. We did not choose it.  No one hands us a list when we are deciding to have children so that we can run down the options and check off what we want. Blond hair - check! Blue eyes - check! Athletic build - check! Social personality - check!



I am not a supermom.

I didn't choose for Kingsley to have spina bifida. If given the choice, I would have politely declined that option, would not have checked that box. I wouldn't have checked the autism box either. Or the one with the third chromosome. Or any of the boxes that would lead me to being a 'special needs mom'.

I did choose to have a baby though. I chose him. I chose him and whatever he was coming with, I chose to take it. I don't mean that I made this choice when we 'found out', I made this choice the day I decided we were ready for number three.

It's not fair that I did everything right and this still happened. It's not fair that some women do everything wrong and it doesn't happen. It's not fair when us mothers are told things about our children that we did not expect, did not want to hear, and yes, even feared hearing above all else. It's not fair. But as a mother, we know that life is not fair. Things happen, but we now must accept that it's not just about us anymore. Deal with it.  No matter what we had hoped for, when that little baby is handed to us the other rule of childhood applies: you get what you get and you don't get upset. The checklist is gone. Your baby is here. You have one job - love them.


Because what is most unfair is the lie we tell ourselves about how accepting we are of differences. The lie we have deep down where we don't want to admit. The lie that comes out the day you are looked in the eye and told that life really is not fair. To see how unaccepting we are of people with disabilities we only need to look at the termination rates after a prenatal diagnosis or the reaction an adult has to learning that they now will be switching teams from able-bodied to disabled. Life is over. A life with a disability is not worth living, apparently. That decision is not fair.

We have such a double standard going. We pat our kids on the head and tell them that they should be nice to the little kid in the wheelchair. Don't stare at the little girl bouncing on her toes trying to fly. Don't point at the little boy who looks a little different. Be nice. Be friendly. Just don't you dare be my child.


I'm told often by the amazing community that I find myself in that living with a disability is not that bad. I have many friends who tell me that having a sibling with a disability is not that bad. Having a partner with a disability, a coworker with a disability, a neighbour with a disability, a friend with a disability... All not that bad. Most would say not bad at all. I can tell you in all honesty, having a child with a disability is not that bad. Not at all what I thought it would be. We have had a few rough patches, yes, and a few awkward moments, but that goes with having kids, no?


Six years ago today, my incredible daughter Rachel was born and I was forever changed in ways that there are just no words for. What I wanted for her in that moment was the same thing I still want for all of my children: to know in every second of their lives how deeply and madly they are loved, just as they are. It does not take an extraordinary woman to feel that love or an extraordinary child to receive it. And though I do happen to think that my three are quite extraordinary, Kingsley is not more or less worthy of such adjectives than the other two. He's just a kid. I'm just a mom. His disability isn't his whole life anymore than its mine. It may not be fair, but it certainly is not the end of the world.

If you ever find yourself in that position of discovering that your child is not going to be who you thought: relax. It's not going to be that bad. You are strong enough, you are amazing enough, you will do just fine. There's no need to panic. Remember that people with disabilities are people. They love, they laugh, they play, they communicate, they live. If you can get over yourself, you will do just fine.



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, June 26, 2011

The Other Kids

I have just one final Awareness topic for SB Awareness month.

When Kingsley was diagnosed, after the panic and shock subsided a little bit, one of the first things that ran through my mind (and I'm sure most moms who have been in my shoes) was: How is this going to change things for Rachel and Cordelia??  For me, it was a given that I was going to have Kingsley, but I know that many/most others take a moment to consider this and factor it into their decision. I've even heard of some OB's using it to push their agenda with comments about how any siblings' lives are going to be sub-par with a brother/sister with a disability. It seems to be a valid concern. 


When I was pregnant with Cordelia, I felt overwhelming guilt about having a second child and potentially ruining our happy little love triangle by bringing in this other kid. Less time for Rachel. Less attention for Rachel. And obviously I would always harbour secret favouritism for my first child, right, because there's no way I could love the second the way I loved the first. The whole thing was a bad idea, clearly. Then Cordelia was born. If you have more than one child, you know how this story ends.  I think pregnancy hormones really do make you stupid ;)

My heart could explode at the thought of this moment. 


I was certain that there would be no downside to having a third. Boy, girl, no matter. 

I hadn't factored in the big bad SB, though.


I want to say that it has only been a positive thing for the girls, but honestly that would be a lie. Looking back, I feel badly about those last four months of my pregnancy and the changes that Cordelia went through while I was so absorbed in my own thoughts. She was younger than Kingsley is now when we found out, still such a baby.  The pregnancy part was so unkind. 

But it ends. 

And your heart explodes just a little bit more. 

The girls still don't care about the SB stuff. They still don't fully understand it, but they've never been sad about it or felt badly for Kingsley. His equipment doesn't scare them, they think his therapists are great, they don't complain about me spending time with him. Up until Cordelia's recent string of doctor's appointments (GP, dentist, eye doctor), they were not remotely interested in the constant appointments he attended either, but now Cordelia insists that she should go too, in case there are stickers or flashy toothbrushes. ;) 


The first hospital stay when he was born was hard on Rachel.  A couple of weeks after he came home, I found her in tears. She didn't want me to take Kingsley to the hospital the next day for his appointment because she didn't want us to leave her again. It took her a while to trust that visits to the hospital did not mean staying there. 


The second hospital stay in November was hard on Cordelia.  For Rachel, the combination of school and Cor's afternoon nap meant that her days were fairly routine. For Cordelia, she was shuffled every morning between homes and grandparents, she saw me leave every morning, she just had chaos. On the 6th day, she begged me to stay home and just snuggle with her, just begged. I hate to say it, but we've got enough experience with this now that by the third hospital stay we had it all figured out and both girls nearly outshined their rockstar brother with their adaptability. 


That is honestly the extent of the negative impact this diagnosis has had on my other kids, full stop.  At three and five years old, they are unphased by so much and I'm immensely proud of them for that. At playgroups and playdates with other kids with various diagnoses, they don't blink - wheels, walkers, tubes, scars, they see past it. They're so proud of their brother and have no problem talking about him to other people, the same way they'd talk about each other, just so matter-of-fact about it all. It's not a new normal, it's a normal normal. 


So, when they tell you that this SB diagnosis is going to have a big impact on your other children. 


You can tell them...


You sure hope so. 


Because the alternative is 


Never getting to see how

Friday, June 24, 2011

Awareness

Awareness is a funny thing, isn't it? June is Spina Bifida Awareness month and I've been thinking lately about what that means. What is it that the general public needs to be aware of? The various international spina bifida associations have inspired some recent discussion on this topic as they seem to want to focus on two things: prevention and support. First, prevention. Second, support.


I understand this, truly. Prevention comes first on the timeline, right? Sure. As such, the vast majority of ad campaigns for SB awareness involve folic acid.  Folic acid has been proven to effectively reduce the likelihood of having a baby with SB. My mom told me once that when she was working in the SB world back in the 80's (she was a PT for the SB clinic Kingsley now attends), that every year there were about 12 kids with SB born, 16 on a really busy year. In 2009, there were 4. Kingsley was the only one as far as I know in 2010. This year there are another handful that I've heard rumors or know of (one born on Monday so send out some prayers for that little sweetheart and her family!). Between my mom's time in the SB world and mine two things happened: folic acid and prenatal diagnosis.  I would like to say that it's all folic acid that is the reason for this drop in stats, but we all know that's not true. I have yet to meet a parent of a child with SB that didn't get the extremely pushy Termination Talk at diagnosis.


I know that I am overly sensitive because I have a child with SB, but the prevention campaigns sting.

Take, for example, this one for my very own SB&HAO this month. "Every healthy baby is a victory" is the slogan. At first, you can think that it might possibly mean that the SB&HAO are going to be there to make sure that your baby with SB is going to be healthy and vital and have a fantastic life, right? Go team! However, then the poster continues with the message: "One in 1300 babies is born with spina bifida and hydrocephalus.  WE CAN CHANGE THAT... DONATE TODAY." I will optimistically assume that what they are intending to say is that every baby not born with SB is a victory for research and education about the causes and thus the ability to prevent it. The overt message is that folic acid can prevent SB (which it doesn't always), but the subtle message is that when that fails, take one for the team, Mama! Next time, you can have a victory!

And if "Every healthy baby is a victory," what does that make Kingsley? Apparently he's not a victory. He's not even healthy! It's no wonder OB's are heavy on terminating.


Awareness shouldn't be just about preventing. It should be about making the world aware of what SB is really like. What the diagnosis will really mean for your child. And most importantly, that our children, friends, parents, family members, coworkers, and neighbours with SB are healthy, wonderful people who are thriving and LIVING.


If you are reading this it's likely because you either have or have someone in your life with SB, or because you know me ;) I just need you to spread the word. Let people know about Kingsley or any of the other beautiful children out there with SB. Let them know that he is amazing and that we adore him and we would not want a life without him. He is my baby boy and he is a victory.


All that being said, I don't think anything gets my back up more than someone NOT taking folic acid for a planned pregnancy. If there is any remote chance that you (or your wife, girlfriend, etc) may get pregnant in the next few months, take folic acid. If your prenatal vitamins are making you sick, take a separate folic acid pill on it's own. You cannot get enough folic acid from your diet, no matter how healthy you are. It just doesn't happen unless your diet revolves around folic acid intake and it doesn't, does it?

In the 70's, it was acceptable to drink when you were pregnant, to smoke, and folic acid was not on anyone's radar. Healthy babies were still born, yes. In 2011, people who smoke and drink when pregnant are seen as gambling with their baby's health. Why isn't the same said about not taking folic acid? Just take it. It's not a guarantee, but believe me, the last thing you want to live with would be to be in my shoes and not know if you could've prevented it.


Edit: Misty also has some comments on folic acid that are worth a read http://www.mistyboyd.com/?p=141

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. ;)

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 2, 2010

New Years...

We're on the other side! This is wild. A few more days and we should be getting a birthdate for this little man.

Wednesday, December 16, 2009

Still Here

I just saw the resident and he went over the results of the u/s yesterday. Everything was fine, there was no indication of abruptia or anything that indicated that I was in labour at all. He said they think it was one of those random blood pooling things like how you get water retention and vericose veins and stuff and it was pretty normal sounding. The little man is weighing in at the 90% percentile, right on track with where Rachel was at this time! What's with my chubby babies, eh? His head is still small, but yesterday the tech got a much better measurement and it's only 3-4 weeks behind, which is fine. There's clearly a lot of variation in u/s's though since he now weighs nearly a pound more in 4 days, but I like yesterdays report a lot better than Friday's and the tech was very excited about getting good shots, vs Friday's who admitted her angles were bad.

If the on call OB gives me the okay after reading the report then I can come home today.

My sister, brother in law and two nieces are coming home tonight. I haven't met my littlest niece yet and I'm aching to get out of here to see them!!

Tuesday, December 15, 2009

Aw, Crap. In the Hospital!

Yesterday at work, I had sudden unexplained huge bleeding. Out of the blue, with no warning, no pain or cramping, just voila! Unfortunately I was out in Townsend and the nearest hospital is a hick town one in Simcoe that doesn't even have an OB on staff, or a nursery, nevermind a NICU. I was horrified and they seemed equally so when I mentioned that the baby has SB. They did a non-stress test (they listen to his heart and monitor contractions and I push a button whenever he moves) to see how he was doing. We did fine. They frantically called London and had me put in an ambulance for St. Joe's.


I got to St. Joe's without complication and they kept me for a few hours. More NST's, checks on me, an ultrasound to assess the placenta, the fluid, him, and all was fine. BUT they also figured I'm nearly 34 weeks and my body/he may be telling me he needs to come out for some reason they can't determine, so they shot me up with steroids for his lungs, put me on an IV, antibiotics and told me I couldn't eat or drink anything. I was having the most mild contractions you could ever imagine, so they shipped me off to LHSC which is where he needs to be born bc that's where his neurosurgeon is.

...Except his neurosurgeon is out of the country for most of December! And my OB was not working, so I was just praying that this passed. At about 3am they finally took me off all the monitors and decided we were calm and fine. This morning, they did another u/s and then took me off the IV and said I could eat (after 22 hours!). We had a more in depth u/s in the afternoon and they took me from the birthing centre to the antenatal unit (where new mom's and bed rest moms hang out). The last u/s showed nothing new.

What they think is that either I'm having minor placenta abruptia (?) where the placenta starts to separate from me. If that were major, he'd be here right now bc if he's not attached to me he's SOL, but minor is nothing they do anything about. Or, my body was kicking into labour mode. Also, nothing they can do anything about since it stopped.

So, here I am. Waiting for them to tell me I can go home again! I feel absolutely fine and have not been in any pain at all. He has rocked all his tests and has a gorgeous heart beat and has been moving like mad and showing all his breathing motions that mean he'd be alright if born. I'm on bed rest, but more of the take-it-easy kind than the don't-move-at-all kind. I'm hoping it was just a random scare and we'll cruise into January without any further drama!

On a positive note, I've gotten to see a lot of him lately. His nose is completely Jeff's/Cordelia's, he has chubby little cheeks and pouty lips and a nice fuzz of hair on his head. Still definitely a boy! We saw him move his legs around and I've certainly felt it. I also got a good look at his back today with some over-excited residents and the lesion was barely noticeable on u/s (I think they were disappointed, lol!).

Keep praying for us, and cross your fingers that I'm home tomorrow!

Friday, December 11, 2009

Small Head?

We had another ultrasound and OB appointment today. He's measuring on track with everything except his head. It's small. This doesn't make sense to me and is freaking me out a little bit. My OB said it's not a good measurement, but she's obligated to tell me about it anyway. It's 5 weeks behind the rest of him. So now I'm trying not to google microcephaly or whatever this might mean. The forums say that the small head is common in utero. Going to start blocking this one out now since I really don't need anything else to worry about!

One more week of work to go. My replacement is starting on Monday and is going to shadow me all week. I'm getting so excited and nervous. Just this last week, then Christmas, then we're in the home stretch. Still no idea what date - they have to wait until the neuro gets back from her time off to coordinate. That means we won't know until January 4!

Thursday, December 10, 2009

Back Down

Yeah, I'm back into life sucks mode. I was all happy with the MRI results, and then I realized HE HAS SPINA BIFIDA - there's no part of that that can be called 'good'. The fact that there is a defect just sucks ass, no matter how low it may be. And he's coming so soon. The surgeries are coming. It's scary! Anyway, I don't know, I'm fine 75% of the time, but it's back in my mind at all times again. Just everywhere I go something reminds me of it and I can't escape. I am also back to hating all pregnant women and new babies.

Jeff doesn't get why I'm sad all the time. He thinks I should just stop thinking about it. He honestly doesn't think about it! But, he's not living with it 24/7. Men just can never understand what it's like to have a giant scarlet P on your front. People comment on it all the time, he's moving all the time, I feel horrible all the time. There's no stopping the thinking! He has hiccups right now even.

I'm also doing avoiding things and I know it, but I can't stop. The SW emailed me with an email address for another mom. I've had it all week and can't send her an email. I have no idea what to say. I don't know what to ask! Suddenly, I want nothing to do with it. She asked me to call her too, and I haven't.

Anyway, tomorrow we have another u/s and appointment. Hopefully we'll pick a date for his birthday. And we'll find out if he's flipped. I thought he had, but these hiccups are at the top and the girls usually had them at the bottom. Maybe he flipped twice. They'll also look at his ventricles again.

Thursday, November 26, 2009

The MRI

Three big things. One is that I had an MRI today. I'd never seen MRI images or anything before, so I had no idea what to expect, but once again my amazing OB outdid herself. She brought Jeff and I right down to the Doc that was reviewing the images and had him show us and explain everything they see.

It was actually a little bit breath taking. I got to see all of him inside all of me. So incredibly cool. It was almost like peeling my skin off and having a look inside, only less gory. You can see all of his organs and all of my (squished) organs. The placenta is right there. His feet were practically in my bladder. He is gorgeous.

Anyway, he showed us his spine and you could see plain as day how it was all normal up to a spot. He then did a cross section to show us vertebrae by vertebrae and we saw L3, L4, totally normal. Then L5 had some splitting or something going on, but not fully defect-ed. S1 and S2 clearly have the defect and are open. The sort of cool thing was that in cross-sectioning him, my spine is also in the picture and you can compare the two. Seriously, so cool. The Dr's said they don't think L5 is effected, but they can't be 100% sure until he's born. That would be amazing if it wasn't, so cross you fingers and eyes and anything else that he functions lower.

His ventricles (in his brain) are getting a little bit big (with fluid), but there isn't pressure, so they aren't calling it hydrocephalus. They expect them to get bigger, and anticipate a shunt, but not that there will be any problems with it.

The second big thing is the whole induction/c'section debate. All of the OB's at the hospital that my OB presented my case to agreed that an induction would be fine and cause our son no further complications or damage. So, full steam ahead. Then Jeff veto'ed it and my OB said we both have to agree, so it was back to a c/s. Then Jeff changed his mind and said it was up to me. Then (you may have caught), we discovered that our boy is breech again. Back and forth, back and forth. I'm leaning toward a c/s at this point, even if he flips. It's predictable, for the most part. I can plan for it. Even though it still makes me nauseated to think about.

One last exciting thing was finding out about a new spinal nerve re-routing surgery out of China being trialed in the States right now that our son could potentially get when he's 6yo+ that will allow him to have bowel/bladder control. Hopefully, they'll work it out in the next 6 years and it'll be routine by then.

And that's about it. I'm finding it better if I stop reading stuff about SB now. I know what I know, and I'd prefer that our son just teach me what else I need to know. Reading about other kids just leads me to panic about the 'what if's' and best/worst case scenarios. I'm half eager for him to just get here and get on with it, half prefering to make these last weeks drag on forever and not have to deal with it. I'm not sure I'm ready.

Monday, November 16, 2009

Blah blah blah

Having a rough week for some reason. The last neuro and OB appointments are lingering. They didn't even tell me anything new or different, but it's still blah. On Friday I was the discussion at OB rounds or whatever at the hospital - whether they should be rethinking the automatic c/s thing. My OB called today to tell me about it, but I have to call her back tomorrow.  I'm absolutely terrified of a c/s. Why do people choose it??


Anyway, I'm getting huge. I can sometimes feel where he is and identify different body parts. Freaks me out a little. I can feel his back/bum and I just think: this is where it is. Beyond surreal. So strange. I think getting bigger and starting to do things to get ready for him are making it real again on a daily basis. I'm trying to think about it in a good way. Mostly I'm terrified. I'm setting up a meeting with a social worker. It feels like the last step in admitting things, for some reason. She's at TVCC and it will mean I'm officially a client there, not an employee or volunteer.

I found out about a new surgery that they've been doing regularly in China and starting more over in North America. It sort of reroutes the nerves in the spine that are needed for bowel/bladder control. He wouldn't be able to get it until he's six, but it would mean more than just social continence. He could actually have control. That would take him so much further toward 'normal', especially from a peers-perspective. I just hope he'll be eligible and that it would work. So far away though, who knows what could happen before then!

Friday, November 6, 2009

Another OB Update

I had a neurosurgeon and an OB appointment this week with another ultrasound. The baby looks fine still. He still has some of the lemon head thing happening, but it should go away. No problems with his feet. We got a good look at them moving around and I could sure feel it. He's flipped head down, so his feet are right under my ribs. Unfortunately, so was his bum, so still wasn't a fabulous look at his back. The little stinker wants to keep secrets.


They looked to see if hydrocephalus was developing yet. His ventricles are measuring 9mm. Normal goes up to 1cm, so he's at the high end, but still normal range. It's just a matter of time though. It sounded like my OB was anticipating seeing it develop soon.

As for the lesion, once again they were saying sacral. For some reason, the u/s techs keep saying it's lower, but the OB and radiologist who did his diagnosis think it's about L5 (just above sacral). It's the teeniest of differences that could mean a lot for him regarding walking though. Hopefully the MRI at the end of the month will clarify once and for all. There is a little sac on his back, but the word is still that his lesion is small.

That's it.

I'm 28 weeks and I feel huge. I'm so uncomfortable.  I do not like being pregnant!!

Tuesday, November 3, 2009

Neuro Update

We had a neurosurgeon appointment today. We didn't learn anything new about the baby. She explained shunts and what would happen with the baby after he's born and while he's in the hospital, more information about his surgery and what she would be doing. We discussed the pros/cons of an induction vs a c-section. That's about it.


One thing that they are making very clear, both at LHSC and where I work at HHSC is that there is a very strict H1N1 policy for the duration of flu season, which will most likely still be in effect when we are in the hospital. No children under 16 are allowed to visit. Cordelia and Rachel will have to wait until he's home to meet their little brother and they won't be able to visit me while I'm recovering. There is also a very strict 1 visitor per patient rule. For me, that means people can only see me one at a time, not together or with other people. If someone (for example, Jeff) is with me, anyone else will have to wait in the waiting room for him to leave. Same rules apply to the baby. Unfortunately, parents count as visitors, so there is a chance that no one will see him, depending on how willing I am to be separated from him. Truthfully, I am not predicting that I'll be dragged away from him very often especially once he's allowed to be picked up/nursed.
We asked how strict they are going to be about the rules, especially in antenatal and where he is, since the visitor policy always seemed loose after the girls were born. They were adamant that those were the highest susceptible areas with all the vulnerable newborns and would be inforced the tightest. This flu thing sucks.

Saturday, October 31, 2009

Checking In

Things are okay. I'm feeling better all around. I think the best thing for me, baby wise, has been finding blogs of other little kids born with SB. I usually only read up until they're a couple months old, but every single one is the same: panic through pregnancy, then the baby is born and they're just so overwhelmed by the BABY, not the SB, same as it is with any birth. Other than the surgeries. It just keeps reminding me that he'll just be our baby boy first. Everything else, we'll manage. I'm getting antsy to hold him and smell him and just do all of that newborn stuff. He moves like crazy now, all the time.


I've decided to start my mat leave way early this time. My last day will be December 18. I won't have any vacation left after all the days I take off for appointments (nearly 1/week right now), but if/when I come back, I'll have some banked from my year off to get me through the holidays and then I'll start in January either way. I can't wait to be done. Work is such a pain in the ass. And seriously, I have SO MANY appointments! I see my OB every 3 weeks, the neuro every month, now I have to add in Social Work and massage (bc I friggin ache!), then random stuff like glucose testing (routine test for gestational diabetes), an MRI (Nov 26!), my Rh shot, ultrasounds, etc. just means so much time off.
Anyway, I've been busy! The girls are still so delicious though. Cordelia still doesn't talk much. She says a few words, will say things for a day and then never again. Her receptive language is amazing though, little stinker. I think she just likes grunting and playing games with us. Rachel is so so so pysched to be a fairy tonight. She has been to 2 Halloween parties so far and the look on her face when she gets dressed is priceless. I swear, she thinks she really is a fairy. I could just eat her up. The three of us got our HINI shots the other day so we are all set for germs, hopefully. Jeff will have to get his later so that the baby doesn't get sick.
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