Tuesday, March 27, 2012

Happy Birthday!

Yesterday Kan Man turned 5!  WOW!  5 is a big one!  We spent the weekend in Paris and had a great time celebrating.  That is a post in itself that will come soon.  This time of year is always a little "fragile" for me.  I was thinking yesterday how glad I am that its Spring and the weather is just so beautiful and full of all the pretty flowers and green grass. I really think a gloomy time of year would make this harder.  With each year I feel like I am able to spend this day with a little more happiness.  Our lives are happy and we can't deny that.  Of course we miss Jayde and of course Kanyon's struggles are......well, struggles, but we are happy and have a happy boy to celebrate. 

 Different things seem to surface each year and this year I have been thinking about what I knew then vs. what I know now.  For the sake of length, I will just share my thoughts about Kanyon (not Jayde).  First of all, this time 5 years ago, I had no idea what kind of odds my babies were facing. I REALLY REALLY thought we were just in for a rough, long hospital stay. I was scared and worried, but I didn't think they wouldn't live and it never occurred to me that they might have life long side effects from this extreme prematurity.  I feel sort of dumb in retrospect, but I think I was just subconsciously surviving and doing whatever I had to do in the moment to keep going.  

We all know how this played out for each of my kids, I was very wrong in my initial thoughts/expectations.  It wasn't until Kanyon was about 2 months old in the NICU that the realities started hitting me.  Then as the next few months played out, I think I realized that a normal developing child was not a guarantee or even a likely outcome for us.  Up until that point I thought he would just be about 4 months behind in his development and catch up by the time he was 2.  Afterall, thats common info that floats around. I think that thought has been around for a long time which is why its not always as accurate as it used to be. I think when that was the general rule of thumb for preemies, it was before they were saving babies this early. Preemies and Micro-preemies are VERY different.  All that to say, my mind went in a million different directions and to a million different places.  Some of those places were pretty dark.  I had NO CLUE what was ahead of me.  

The majority of this searching started when we left the NICU.  I knew Kanyon was a little ball of "risk factors" but they were all so broad and generalized statements. I wanted to know what his IVH and hydrocephalus was going to do to MY baby.  I wanted to know what MY baby was going to look like/act like/ be able to do/not be able to do.  It was a consuming and maddening place to be, but I think I had no where else to go.  I remember being frustrated when Drs gave vague answers, or worse...said, "every baby is different".  I would hear of other people getting more concrete answers (which may or may not have been proven true) and that is what I wanted. I wanted to know what to expect or at least a place to start. Even if they turned out to be wrong, I could at least know where to start with my expectations.   I felt like everyone was scared to tell me the truth or they were trying to protect me. There were even times I felt like they thought I was silly for asking those questions.  So I fretted and worried and wondered. But as the months went by and time passed, I demanded less from those experts. I didn't even ask those questions anymore. I didn't make a conscious decision to do that, I just sort of quit doing it. I'm not sure if I just got tired of the same answers or if something inside of me changed.  But at some point, I made a switch. I just didn't care.  I didn't need any answers from people. I was finally comfortable with the truth in "every child is different" and I understood more and more why it was so hard for the Dr.s to answer my questions. In a lot of ways, it really is impossible to know the end result.  I  knew Kanyon's strengths and I've always had a very realistic view of his weaknesses. I am comfortable in all that we are doing to improve on his weaknesses and enjoying his strengths.  So, I didn't feel the need to ask someone that didn't know him at all what he was going to be like when he was 5 or 10 or 20. Formal diagnosis like Cerebral Palsy, etc. have never really bothered me.  So far, we have yet to get a diagnosis that I really feel like changed anything.  When a Dr. finally says those words....nothing happens.  You leave that office with the exact same kid you brought in. To hear those words have yet to really bother me. In fact, it give me a shorter answer when someone asks what is wrong with Kanyon.  :)  I know everyone handles those moments in time different and I don't want to minimize them, but thats how its been for me.  Not a big deal.  

I can't remember all of the thoughts and worries that I had those first couple of years, but I think I can get to the source of the fear.  I didn't know the kid I was worrying about.  I was imagining these different scenarios and they were freaking me out. But the boy in those scenarios wasn't Kanyon. It was some kid I was imagining in my mind....no wonder it was hard for me to feel good about those thoughts!  Here's a little side note: This thought is something I always share with friends or people sent my way when they find out their unborn or young child has or will have disabilities.  The kid you are imaging in your fears is NOT your kid.  Your kid will be YOUR kid and that changes everything.  No matter what happens with the child, it will be yours and your love for it will cover those fears.  OK....So like I said, I've thought about what I knew 5 years ago and what I know now.  And I think "What if those Dr.s could've told me exactly what my son would be like when he was 5?"  They would've listed things like:
not walking, bowel troubles, still in diapers, didn't eat until he was 3 1/2, left arm almost useless, visual impairment, cognitive visual impairment, major major language delays, difficult discipline/emotional issues, about the maturity of a 2 year old, not even close to the academic levels (or any other levels for that matter) of his peers, still in the nursery at church, almost 100% dependent on adults........the list could really go on and on.  So, what if they could've given me a glimpse into my son at 5 years old, What would I do????  I WOULD'VE FREAKED OUT.  TOTALLY FREAKED.  OUT.  ALL THE WAY OUT.  That long list sounds so bad and hard and "unsuccessful".  But what they couldn't tell me was how much I would love this boy.  How proud I would be of him.  How I can't even imagine him "like the other kids his age".  How hilarious he is.  How much JOY he brings to our home.  How much I don't even mind carrying him on my hip.  How I don't really care when he walks or if he walks.  They couldn't tell me that there would be supernatural bond between us. How truly happy we are and how GREAT our life is.

Even if they could've answered all my questions, they couldn't have possibly told me the most important things.  The only things that mattered are out of even the best Doctor's realm of knowledge.  I don't think I made a mistake at the beginning or that I was wrong for letting those things consume me. I think its all a part of navigating my way into motherhood and especially into a motherhood with one less child and lots more challenges.  I am thankful I reached this place. Its a much lighter place to be. I'm carrying around WAY LESS than I used to and my perspective has gradually shifted.  I do feel like I will always carry more than a lot of people. And know that I am not saying that I wouldn't change everything if I could. I'm not saying that I don't get sad or discouraged, or frustrated, jealous, or complainy (yes thats a word).  That "list" the Drs could've given me 5 years ago, would in no way have brought ANY relief to me then. Now I know how blessed we are that so many other things aren't on the list or that many things on the list aren't hopeless.  I will be the first to admit things with Kanyon could've gone differently in a lot of ways and we could be dealing with many more disabilities and struggles than we are. I am humbled by that and respect so much the moms and dads that deal with SO MUCH MORE.  I also know that most of the time,  a lot people have it "easier" and that is the thought that has to stay balanced or else it will take me to a bad place.  BUT I also know that NO ONE ELSE gets to be Kanyon's Mom. And I'd say its WORTH IT!  

There are things that hang over my head that I worry about.  Of course.  But I can usually talk myself (or Kory can) through them.  The bottom line is: Ok what if _________ happens?  We'll deal with it.  Its like the ultimate realization that we can't control it and that GOD will give us the strength and whatever else we need to get through it.  Sometimes I kind of laugh at what all we've been through.  It seems way harder in retrospect than I remember it being at the time. We have learned in a BIG way what its like when GOD takes care of your every need.  I still don't have a picture of what I think Kanyon will be like when he's 10 or 20.  I try, but I can't come up with even an imaginary picture in my mind. I think there are too many things up in the air.  I feel like I can imagine Quinn (which I realize he won't be exactly like I imagine him, but I can at least come up with an idea) but Kanyon?  Nope.  But I have a sneaky suspicion that it will be way better than any picture I could come up with anyways.  

So, there you have it.  5 years later, I'm glad I didn't know all the details. I think I would've truly gone crazy.  We love both of our babies so much and I would give anything to have Jayde blowing out candles too, but we live in the only possible comfort we can and that is Heaven.  Some days that brings more comfort than others, but at the end of it all we know we WILL be together.  

Here are our yearly pictures by Jadye's stone:



The kids (the dogs were there distracting them and we were trying to avoid a fire ant bed...not the best pics)




Kanyon showing his 5!!! 

I will now publish this with no proofreading or editing.  I'm sure I could make it better, but I don't know when I'd get the chance.  So here's the unedited version.  :)

4 comments:

KParish said...

Thanks for sharing, but no thanks for making me cry! just kidding. I think you have a phenominal kid and you and Kory are some of the most remarkable people I have ever met. And I'm not just saying that to flatter you! :) I will be passing this blog along to some people who might find comfort in your story.

Anonymous said...

Jamie,
You may remember that my son Kyle Muñoz was in your class the year the twins were born. What you probably don't remember is that I am a PPCD teacher. I just want to let you know that we have followed your blog for the last 5 years, and it has been such a testament of what a difference parents can make in the life of a child with a disabilty. I wish that all of the students I have worked with had parents as dedicated as you all. Thanks for sharing your journey :)
Charlotte Muñ

Leah said...

Love u sweet friend! I too look forward to meeting sweet Jayde one day and what a precious reunion All of you guys will have! You are a fabulous mother with a great love for your boys! It reminds of how sweet and deep Our Father's love is for us. I see HIM in you and Kory as you pour selfless love and dedication out over and over. Looking forward to all of the boundless milestones will accomplish in the next 5 years!

Sarah said...

First, this was such a beautifully written post, from the heart, and sweet. Secondly, I cannot believe Kanyon is five!! What a precious kid he is!!
You are a wonderful mom and you make it all look too easy.