Perspectives

I think it's funny how little moments can put big things into perspective when you least expect it.

I had one of those little moments this week and it has made a world of difference in my attitude and outlook. 

I have my little man, Cole, to thank for reminding me how lucky we are. 

After Xander woke up early on Monday morning. At 5:30am to be exact, I was so excited to realize that we had slept through the night and not had an hour party in our crib from 2-3 which has been the norm lately, that I didn't even realize it was before 6 again! Anyhow, Xander and I preceded with our normal Monday morning routine: solid food, bottle, pack the diaper bag, load the jogging stroller in the car, play a little. After Cole wakes up, he eats some breakfast, changes clothes, and we head out to meet my friend, Janel, with her two little ones for a nice, energizing run. 

Well, on Monday, Xander and I were all ready and 7:30 rolled around and Cole still wasn't up, so I postponed our run for half an hour. 8 o'clock, no Cole. I canceled the run thinking maybe he just really needed to sleep. 9, 10, Cole is still sleeping... Ok - what's going on? At 10:30 Cole finally comes downstairs - at which time Xander is already down for his nap, so I get some milk and cereal for Cole. About 10 bites into the cereal he sounds like he's gagging, so I run over and he starts throwing up - all over himself and me. He's scared and doesn't know what's happening, so what do I do? What any mother would do, say to heck with it and half hold him and half turn him away to try to get a majority of the mess landing on the tile! Anyhow - after that episode, we both took a bath and Cole spent the rest of his morning on the couch with water and dry cheerios to snack on. Poor little guy!!

Now, the point of my story is not the puked on experience, I'm sure we have all had that at one time or another! But the fact that when your kids are suffering, it is the worst feeling in the world. All you want to do as a parent is to somehow make it better or make the pain go away. We are truly blessed in that we don't have to struggle through that burden on a daily basis. 

One mantra I keep repeating to people when they ask about Xander is that we are lucky. I have never known a happier and healthier baby. Besides our short residence in the NICU after he was born, he has been the picture child for health. He's constantly smiling and laughing. He rarely cries and is unhappy. And he has no idea anything is wrong with him. 

That's why I say it is all about perspectives.

We are blessed in so many ways to have two boys who are happy and healthy - which is all we really have ever wanted. 

The hard part is facing the reality that we need to change the dreams and expectations we have for Xander and the process of that shift in perspective throws me into a cycle of grief and loss. It's almost as if I am grieving for the child I had planned to raise into adulthood. 

Don't get me wrong, I am so thankful to have Xander and I love him so much, it's just that part of what I have always looked forward to with my kids is seeing what they become in the future, who they marry, how many kids they'll have, etc... Letting go of part of that dream for any of them at such a young age is difficult and I'm sure I will continue to struggle with it as he grows and continues to fall further behind. 

But, then I remind myself that he is happy, he is healthy, and there is no reason that he can't make a difference in the world! 

Journey

Our lives are journeys and as much as we want to be able to plan for and anticipate the future, it doesn't matter who we are or where we think we're headed, life changes us. It forces us to deviate from the path. Maybe not a long detour and sometimes it might even end up being a short-cut that you stumble upon, but none of us ever get to our destinations without hitting a few bumps in the road.

Maybe that's where I am right now. Stuck in a snowdrift. I keep spinning my wheels and digging in deeper, but I know eventually, even if I can't dig myself out, spring is just around the corner and the snow will melt with time. 

When that happens, the road might not look the same as it did before, but it's still headed towards happiness. Although it might be muddy and wet, if I look closely, I'm certain to see all the buds on the trees and the beauty that is about to open and reveal itself in the fresh, new sunlight.

~Jami

There is the writer in me. Sorry - felt like I just needed to sum up my day! 

After my post yesterday, the response has been overwhelming and I want to thank all of my family and friends for being so supportive and helpful during this trying time. 

But the response also made me question my motives. Why did I choose to share the blog and link it to facebook? Had I not chosen to link it I could have still poured out my heart and gotten things off my chest, but without most of you ever knowing it was here. In contemplating this answer I knew right away it wasn't for attention and it certainly wasn't for pity. That's the last thing we need right now - it just makes me feel incapable and inadequate to do my job as a mother. 

Then it hit me. I think the answer is fear. Fear of so many things, but mostly fear of losing myself in this journey. Fear of becoming "that mom" that people stop wanting to run into at the park or talk with at the store because all she has to discuss is her never-ending sob story. 

I think my hope and motivation with this blog is not only to process my journey, but also to share our struggles and milestones with friends and family who want to hear about it. Hopefully, through doing this, it won't consume me and the short "mom breaks" we all have to ask one another how they are doing before we run off after our crazy toddler or have to excuse ourselves to change another diaper won't repeatedly turn into stories of doctor appointments and test results. 

So, read as often as you want and keep up to speed with our journey if you choose. It's up to you. For me - this is going to be an outlet for anything I might be feeling - happy or sad - because I know there will be good days and there will be really shitty ones too, and that's ok. But my goal through all this is not to lose myself. To maintain my energy for life and optimistic outlook on the world. 

And most of all, not become "that mom" everyone wants to avoid.

Welcome to Holland

Why is it that I always get back into this when I feel like I have nowhere else to turn?? Well, suffice it to say, this time, I think I am here to stay.

I have so much going on in my head that I need an outlet - a place where I can process all I'm feeling, get it out there, and not have anyone trying to solve something that doesn't have an answer to begin with. 

Xander was born on December 1, 2011. He was about 5 weeks early and showed up very unexpectedly. So unexpectedly, in fact, that his Daddy didn't even make it home in time to welcome him into the world. 

Fast forward 9 months and what feels like a million doctor's appointments later and here we are. Still no diagnosis or answer, just more questions and unknowns. 

What I do know is that the last week and a half has been hard, really hard. I think that, although we don't have a diagnosis yet, it has finally hit me that all this; doctors, therapists, appointments, unknowns... isn't going away. Xander will never be a "normal" kid. 

We saw the neurologist on Monday and he's ordered a complete chromosomal analysis and an MRI. Just waiting for the referrals to go through so we can tack some more appointments up on the schedule. 

Did this shock me? The truth is, no. 

Part of what has made the last week or so more difficult than most is that it's what I expected. There are so many things that I see with him that I know aren't typical and sometimes, after the kids go to bed, I google different symptoms looking for an answer. 

On Saturday night, I finally found a genetic syndrome that pretty much describes all he has presented and the medical conditions he has faced up until this point. Granted, I'm not an expert and the tests will confirm or deny what I fear, but even if I don't have it exactly right, I think I'm pretty close and it's a lot to deal with and process. 

As I was sitting here, debating what to write and if I would even start blogging this journey we are on, I came across this poem. It made me cry, but it was beautifully written and I think I'll share it in closing today... 

*******

Welcome to Holland

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to imagine how it would feel.
It is like this...

When you're going to have a baby, it is like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The Gondolas of Venice. You may learn some handy phrases in Italian. It is all very exciting.

After months of anticipation, the day finally arrives. You pack your bag and off you go. Several hours later the plane lands. The stewardess comes in and says, 'Welcome to Holland'. 'Holland? ' you say. 'What do you mean Holland? I signed up for Italy! ! ! I am supposed to be in Italy. All my life I have dreamed of going to Italy! '.

But there has been a change in flight plan, they have landed in Holland and there you must stay. The important thing is that they have not taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It is just a different place.

So you must go out and buy new guidebooks. And you must learn a new language. And you will meet a whole new group of people you would never have met before. It is just a different place. It's slower paced than Italy. It's less flashy than Italy. But after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, and Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that is where I was supposed to go, That's where I had planned'.

And the pain of that will never, ever go away, because the loss of that dream is a very significant loss, but if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley (in 1987)