Monday, November 21, 2011

Statistics can kiss my ass

I am so sick of statistics. Once you've been on the losing side of statistics they really don't mean much. People that have never (or hardly ever) been on the losing side take comfort in statistics. "The chances of x happening are only 0.1%" Oh phawoo, we don't have to worry then! But once you've been that slim chance, you just have this dreadful feeling deep down that that slim chance will most likely happen to you. Why wouldn't it? Bad things happen to good people.

It's getting a bit ridiculous now tho. For the most part I am lucky. My two kids are healthy (for the most part) and happy. We have made changes in our lives that will allow us to live more comfortably and with less stress. We have great family and friends that love and support us. Our lives are good.

But really? Seriously? For a while I'd like to just be on the good side. The side that doesn't involve dread and sick feelings when you hear the word "percentage" or "chance" or "don't worry". I want to hear a doctor say that it's most likely not x, and actually believe them. Not think "Ha, we'll prove them wrong now won't we?" I want the good luck. I'm sick of being rare, unlikely, 'the special case', the slim chance. I just want normal.

I was recently reading over the medical records I received for myself and the three kids. Recent health news caused me to pull them out again, searching for numbers, facts, notes. It all just made me mad. Well, maybe not mad (some stuff definitely made me mad) but more annoyed or frustrated. Every kid we have had has had at least one 'slim chance' happen to them. At least one. At least. And the oldest kid is only four! In four years we've had countless numbers of slim chances, special cases, unlikeliness. BAH!!!

I won't get into all the past rare-case, slim-chance, unlikely things we've had the misfortune to prove the doctors wrong on. I'm not complaining. I don't mean this as a whoa is me type of post. I know we're lucky. We are lucky to have two bundles of energy and joy in our lives. We are lucky to have money coming in, love in our lives, a roof over our heads. Even tho we've had all these misfortunes I wouldn't change much. It makes us who we are, who our kids are. Whatever doesn't kill you makes you stronger, and all that. (although I do sort of hate that cliche right now, since one of the rare-cases did actually kill a little bean I love very much). I am merely venting since we've recently had yet another rare-case diagnosis.

This time it's Lexi. Or rather, this time it is Lexi again. As a baby she had silent reflux (like normal reflux only she never spat up, instead she swallowed it back down, burned on the way up and burned on the way down). Silent reflux is fairly rare; none of our regular doctors even knew what it was. We got a referral to our pediatrician who immediately recognized it as a milk-protein allergy (reflux+eczema+irritability+diarrhea). She outgrew this by the time she was about 15 months (whoo hoo!). Statistics say that 2-3% of babies in developed countries will have a milk-protein allergy. So she outgrew that around January 2011, becoming 'normal'; not one of the 2-3% of kids with a medical diagnosis. Phawoo. Then in the beginning of March she became constipated. A few medical professionals told us it may be a milk allergy or sensitivity (to which I replied "you bite your tongue!"). Nothing worked with the constipation. She's been on laxatives, in one dose or another, for the last 7 months, before that we tried dietary changes. Nothing has been working. Every couple of days she would be in immense pain as she tried to do one of the most basic bodily functions. It just was not right. Then lately we were slightly concerned about her size since she is very big for her age and has drastically moved up on the growth charts, not even staying on any sort of curve. Add to that the fact that she often will just lay down on the floor with her blankie. At first I thought she was just taking a break to snuggle with her most loved possession. Then I started thinking it may be a little odd. So off we went to the pediatrician.

Turns out the constipation, paired with the growth, paired with the fatigue triggered some red flags with our doctor and she sent Lexi for some blood work. After 3 vials of blood were taken and analyzed we have found out that Lexi has Acquired Hypothyroidism. So we're back to the rare case. Hypothyroidism affects about 3% of the general population. And of that the majority are older adults, it is fairly uncommon in children. So what does this mean for Lexi? It means daily medication. It means routine blood work to check her hormone levels. It means a very real possibility of a lifetime of medication and blood work. There is a chance that she could outgrow it in the next few years. It's unlikely, but there is a chance. Please let this be our rare, unlikely, slim chance. So far she's outgrown her silent reflux and her milk-protein allergy. Let's hope she does it again. Let's be on the winning side of the statistics. Please?

Thursday, November 10, 2011

Happy Birthday Little Man


This is how it should be: You should be waking up tomorrow to find the bathroom mirror decorated with drawings of everything you love. You should be having pancakes, or french toast, or bacon and eggs, or Lucky Charms; whatever is your most favorite breakfast. You should be beaming with excitement as you pick your favorite outfit to wear on this day, your day, your special day. You should be planning out what we do today, thinking of all the most fun things you can imagine. We should be planning your birthday party, which would probably be on Saturday or Sunday instead so that we can spend this day, your day, as just a family doing whatever your little heart desires. We should have your favorite dinner and eat a cake that I slaved over to make perfect for you. You should be blowing out the candles and making a great big three year old wish. You should be eagerly ripping into the paper that is hiding the present that we picked out specially for you from a list I'm sure you would have told us. You should be getting extra hugs, cuddles and kisses on this day, your day. And it would have been an extra special day since this year all your numbers match. Today, your birthday, is 11/11/11. All number 1's. We would have played up on that big time.

But it will not be like that. There will be no special breakfast, who knows what would have been your favorite, you never got a chance to find out. There will be no favorite outfit, you never got to wear any clothes we bought for you. You are not here to tell us what is the most fun thing to do. You never got a chance to make any friends, so there will be no party. I cannot make you a cake, it's just too hard to make one without imagining what should be. There is no favorite dinner, no presents, no list of favorites. There is no you. And, baby boy, I am so sad about that. Three years have passed and this year is just as hard as every one before it. I miss you. I miss you so much. I don't want other people here on this day, your day. I want you here. I want to feel your weight. I want to kiss your sweet forehead, touch your beautiful dark hair. I want to tell you I love you. I want to just be with you, be happy with you. I want to hear you laugh. Hear you call me Mommy. See you smile and hold my hand. I want to know you as a three year old, not just have to imagine it.

I don't want to be sad on your birthday honeybun. I want to think of you with a smile. Think about how happy you made me, how much you changed me, all the good you have caused in this world. I don't want to be sad when I think about you. But this year I'm just sad. You are the missing piece of our family. The missing piece of my heart.

But I'll try to be happy. Your brother is so excited about your birthday. He was excited all week to give up the little treats we made for everyone to tell them about you. He is so excited to celebrate your birthday, to have your cake and blow out your candles. He knows who you are. He says he misses you and loves you. I don't think he really understands fully, but he knows how special you are. One day he'll fully understand. So will your baby sister. If I had my way every single person I meet will know who you are. And that makes me sad again. They shouldn't have to know of you, or know who you were. I so desperately want everyone to know you. Know the little three year old spitfire that I'm sure you would be.

I love you. I always will. Not a day goes by that you are not in my thoughts. Not a second goes by that you are not in my heart.

With more love than I ever thought possible,

Tuesday, November 8, 2011

Random Acts of Kindness

This Friday, November 11th 2011, should be Benjamin's third birthday. I cannot believe it has been three years since I held my beautiful baby boy for the first and last time. Three years. So much has changed in the last three years, but one thing has stayed constant; my love for him. Not a day goes by that I do not think about him. A while ago I was chatting with a friend and somehow the topic turned to Benjamin. My friend commented that every time I talk about him I subconsciously start playing with my necklace. Since her comment I have noticed that I do, in fact, do that. My necklace has become such an important part of me. Jackson and Lexi know that it is special to me and that it, somehow, is special to Benjamin. They both play with it a lot. It makes me happy that, even though they don't realize it, every time they touch my necklace they are connecting with Benjamin.

Anyways, that was off topic! Once again this year I am asking everyone to do a random act of kindness on Benjamin's birthday, in his honour. It can be a small act or a large act. An act toward someone you know or someone you don't know. It can be a monetary gesture or free kind gesture. I don't care what you do, as long as you somehow make another person's life a little easier or happier for even just a second. As long as you make someone smile in Benjamin's honour it will make this difficult day a little easier for my little family. The fact that we cannot see Benjamin's sweet little face break out into a giant smile as he celebrates his special day is hard for us. Not being able to watch him blow out the candles on his cake, a cake that he requested and I spent hours slaving over to make it perfect for him. Not being able to hear him squeal with delight over the present that we had agonized over before finally deciding on. Not being able to watch him run around the room hopped up on the excitement of being the center of attention for an entire day. Not being able to give him a giant squishy hug and kiss as his last night as a two year old and on the morning of his first day as a three year old. All these things make this day heartbreaking. But we are able to spend the day with moments of happiness as we get emails, texts or messages from friends and family who have done acts of kindness to others on Benjamin's birthday.

So all I ask is that you do an act of kindness to others this Friday. Then let me know what it was. I am keeping a list each year. This is the first year that I will share the list with Jackson. He 'gets it' this year. He understands who Benjamin was, what he means to all of us, that he has died and that we celebrate his birthday in his honour since we love and miss him. He understands that we are asking people to do things for other people to make them smile. That we are doing it for his baby brother.

Monday, November 7, 2011

Just a quick statistical blurb

This really surprised me.

The year Benjamin was born there were 44,707 babies born in British Columbia. Of those 431 were stillborn (20+ weeks gestation); only 1% of pregnancies in BC in 2008 had such a tragic ending. Of these 431 stillborn babies, 127 were ‘late gestational losses’; babies that were stillborn at greater than 28 weeks. That means that Benjamin was one of only 0.3% of babies lost at this age. Point three. Seems small. But that is seven full kindergarten classes (average class size for 2010/11 was 18 kids per class). Seven full classes. Suddenly 0.3% doesn’t seem so small.

It amazes me now that people believe it will not happen to them; their baby will be born okay. And chances are good that that will be true. But now I know better. I can never be one of those wonderfully naive pregnant women. Because I know that to be one of the families who it does happen to is to live an unimaginable horror. You should never outlive your child. You should never hold your 6 pound, 3 ounce baby boy and know the only life he had was when he was cradled in your belly. People do not talk about Stillbirth; about babies dying. It is sad. Believe me, I know that. But the thing that is sadder is that no one wants to talk about it. My baby died. I will never get to be a proud mommy beaming at him over his accomplishments; hearing people tell me what a fantastic little boy he is. I never get to talk about him because to talk about him is to talk about a silent topic; a topic people would rather avoid. Most other bereaved parents I know want to talk about their babies. We want to be able to tell people how beautiful they were. How cherished they are. How loved they will be forever. We want to be able to include them in the ‘how many children do you have’ answer. Every time I have to say I have just two children a little piece of my heart breaks. It is true. I do only have two children. But I have had three babies. I have had three amazing little beings that take my breath away every time I think about them. Sadly only two of them are in my arms every day. But all three are in my heart every day.