Milestones

Human nature is a funny thing. The desire that we have to categorize, classify, quantify, and measure everything around us in order to make sense of the world intrigues me. Even more so now that I have a child with special needs.

Milestones for kids are a prime example. I've lived on both ends of the spectrum and it has been an eye opening experience the second time around.

When Cole was a baby, I found myself feeling like each well-baby check was scheduled for the soul purpose of keeping up on his immunizations. It always seemed like the rest was just arbitrary. The questionnaires on milestones never seemed to make much sense. I always found myself thinking "Well of course he can do that."

This time around I find myself dreading each appointment when the nurse, that never takes the time to scan our file, starts asking the same generic questions and I'm sitting there thinking "No, no, no, no - he can't do any of those things. Maybe if you pull out the 6 month checklist I might be able to answer yes to something. Can you just get the doctor, he knows who we are."

It's not fun, I'll tell you that much, to feel like each visit you're giving your child a failing grade and they don't even have an opportunity to share what they CAN do. In fact, today was a BIG day and it is very exciting. Today he started babbling with a consonant sound "da, da".

I know that all parents are excited when their children hit a new milestone. But, to be honest, although I was really excited with all of Cole's milestones, that first year they came so often and so fast it was almost hard to keep up with all of the excitement. With Xander, I find myself appreciating each milestone so much more, because they don't come fast, they don't come easy, and they don't come often.

If you don't have a child with special needs or you haven't spent much time around kids with disabilities, I'd like to equate it to the diet from hell. You know that moment, when you feel like you've been working your tail off, going to the gym for at least an hour a day, eating all the right things, and living the lifestyle your trainer has been encouraging, yet week after week the scale doesn't budge. You're stuck on a plateau and it is hard to stay motivated, because you feel like you'll never get over the hump.

That's life with a special needs child. Everyday you find yourself on that plateau, working hard to see some sort of improvement or change. Yet, most days, when you jump on the scale, even if you have put in that extra effort for the last week and you skipped dessert every night, the number is always the same.

So, the days when the number does change, even if only by a quarter of a pound. Those are days to celebrate! So, today we will celebrate with Xander and rejoice in the "da, da, da" sound that is echoing through the house!!

Return to Sutter

December is such a crazy time of year for our family. It's hard to keep up with all the celebrations, birthdays, TDYs and deployments!

Last week we celebrated both Xander's 1st birthday and Cole's 3rd birthday with friends. Both kids had a blast and their friends did too. Unfortunately, Daddy missed the celebration as he was stuck in Guam with a broken airplane.

Although it was stressful and I know he wanted to be there, I almost had to laugh. It seems like no matter what the plan, there is always something that prevents him from being present during big events.

I mean it was just last year that he missed Xander's birth because he was TDY. Now this year he missed Xander's birthday, the birthday party for both boys, and since he left on another trip this morning, he will be missing Cole's birthday tomorrow...

In fact, I had to take a picture of Courtney and Xander at the birthday party, because although Nic missed both Xander's birth and his 1st birthday party, Courtney was here for both!!

Here's to good friends and being an Air Force wife!!

I am grateful, however, that Nic was here yesterday for Xander's surgery.

We've known this surgery was coming for the past year to correct a birth defect. In fact, we had to reschedule it once because Xander was sick with a fever and I didn't want him to be put under if he wasn't healthy to begin with. The rescheduled date of early December just so happened to coincide with the exact time frame we spent in the NICU last year.

Not that any surgery is an easy thing for a parent to see their child endure, but my feeling of uneasiness was increased tenfold from what I had imagined it would be simply because once we were at Sutter Memorial, sitting in a waiting room directly below the NICU and walking the same hallways we lived in for what seemed like ages last year, I couldn't help but feel a huge sense of dread. I was so scared that we were going to wind-up right back upstairs.

Thankfully, that didn't happen. The surgery went well and we were able to bring Xander home shortly after. I'm happy to say that although he's dealing with some pain and discomfort, he's doing as well as can be expected today and we can't wait for Daddy to get back home so we can celebrate another belated birthday and spend Christmas together (fingers crossed).

Hurry Home Daddy, WE LOVE YOU!

A Marathon

Since Nic left, at 3am on Thanksgiving morning... yes, I know - nice... What was even better is that the whole house was up to see him off... Ok, not so nice, but we actually had a great Thanksgiving with friends and both boys were on their best behavior, despite Cole refusing to take a nap all day after his early morning wake-up!

Anyhow - as I was saying, since Nic left last week, I've been scouring the internet and pouring over different chromosome studies that are accepting participants, trying to get somewhere with someone and to tell you the truth, I don't feel any closer to anything.

The results from Xander's chromosome microarray came back normal. I know... "That's great." right?  Only, when you know something is going on with your child and most of the specialists he's seen agree that there is most likely some type of chromosomal disorder responsible for all of the different symptoms and characteristics he's presenting, it just makes things that much more frustrating.

And it becomes even tougher to swallow when I think of how hard I had to work just to push this microarray through the insurance company at the suggestion of the neurologist, even though I told him that the syndrome I feel Xander most closely resembles can't be detected through a microarray because the deletion is so small you have to perform a FISH test, using fluorescence to map the pieces of the chromosome, to even detect it.

So, although I'm not a doctor and I could be wrong, I feel like after all this work we are back at square one, with no answers and a neurologist who has basically exhausted all the options he is willing to pursue and wants us to see a geneticist, which we should have seen long ago, but the insurance company repeatedly denies the referrals for... aaahhhhh.

Then I take a breath.

I step back.

I look at things from a fresh perspective.

I'm renewed.

It's amazing, the roller coaster of emotion that you ride. One moment it's hopeless and the next "you can do it."

I think my moment today came from talking with my cousin, Amber, over Facebook. She was asking me questions and trying to help me navigate referrals, sharing with me some of the valuable information she learned by advocating for her child. I want to thank her for that. It's nice to have people reaching out and really trying to help.

But, what dawned on me after chatting with her, as I was giving Xander his bath and getting him ready for bed, is that I don't need to be in such a hurry.

Sure, these things are annoying and it would be nice to have some answers and have a diagnosis, but even if a doctor could tell us definitively tomorrow what is going on, in the short-term nothing would change. We would still have our weekly appointments with our physical therapist, occupational therapist, feeding specialist, special education teacher, and visual therapist.

And, unlike other parents who have to navigate this road of doctors and specialists as quickly as possible because for their child it's a matter of life and death, we - as far as we know- have time on our side.

We aren't in a sprint... we're in a marathon.

I'm reminded that although I want answers, what I need is to embrace each stage my child is going through and be present for both of my boys instead of glued to the computer, looking for a solution to something that may have no answer at all.

Life is going to be slower for us. Stages are going to seem to stretch forever and milestones are going to be few and far between, but they will still be important and we need to enjoy the time between them with a child who has so much joy in his heart he reminds us on a daily basis that we can't measure success by other peoples' standards.

Going through the motions...

You know how you have those moments in life where you feel like you're going through the motions, doing the things that you need to do, but you're almost outside of yourself, you aren't really experiencing anything and everything seems like it's just passing you by??

That's how the last few weeks have felt.

I know we're busy, in fact we have almost every day chalked so full of appointments and some semblance of normalcy that we barely have time to breathe, but I'm left feeling empty. Like I'm not even playing an active roll in my own life anymore. And what's more frustrating, is that there's no end in sight.

I keep telling myself that we can make this work - we can schedule all of our therapist appointments on Tuesdays, Wednesdays, and Thursdays so that Mondays and Fridays will be left wide open so we can attend play dates and participate in fun activities like a normal family... but inevitably, we end up scheduling additional specialists on those days and boom we have 5 days of appointments scheduled before I know it again.

What's escaped me to this point is finding a balance.

It's my job to make sure that my kids can relax and just be kids a few days a week, but I also know we need to fit these appointments in to give Xander every early intervention opportunity available so he can reach his full potential. And so far those two objectives haven't been able to coexist and I'm not sure how I can make it happen either. Then, to top it all off, I've been so worn out and exhausted with everything that I'm starting to lose my temper with both Nic and the kids and become a person I barely recognize!!

It's funny, because as I'm writing this and beginning to process it all, I'm starting to realize how desperately I need to make a change now, before this becomes a pattern.

I'm not sure at this point how it's going to fall into place or what it will look like, maybe if I start with myself and concentrating on what I need first, then I'll have more energy to apply towards everything else that needs attention.

So, I'm going to make a pledge to myself and all of you, that this week I'm going to focus on myself. I'll do some form of exercise for at least 30 minutes everyday, eat healthy meals and snacks, and take a bath before bed, right after the kids go down every night so that I can have some time to relax, unwind, and catch-up on my sleep.

Hopefully by next week, I'll be feeling more like my old self with energy to spare and I'll be in a better position to tackle the rest of my to-do list!!

Wish me luck and I'll see you all next week!

Busy, busy

Wow - Busy Week!!

I'd like to say that I'm sorry for leaving everyone hanging last week, after our appointment with the Neurologist, we had our usual packed week of doctor and therapist appointments, but we also added a sick toddler into the mix and getting the house in order for Chad, Katie and the kids who came to visit this week - needless to say, I did not get much computer time, let alone a chance to collect my thoughts.

Well, after a packed week of fun with family, in spite of Xander being miserably sick for a few days, I am finally getting a chance to update everyone.

Monday, a week and a half ago, we visited our Neurologist in Sacramento to get the MRI results. As much as I would like to tell all of you that we got some answers and we now know what we are facing and have an idea of what Xander's and our future looks like, we didn't and we don't.

The MRI was pretty much normal. The only thing that was a little off was that Xander has a thin corpus callosum, which is basically the hub of the brain that connects the right and left side - but that is also seen in normal functioning kids from time to time and therefore, it doesn't really give us any answers.

Frustrating?? Yes - in fact, I was so frustrated to have not gotten anywhere that I broke down into tears in the doctor's office. Which makes no sense because it is good news that his brain appears pretty much normal and there are no tumors or lesions or missing parts, but I just feel like we go around and around and we keep going through these motions and we never get anywhere.

Now that I have had more than a week to step back and catch my breath I am in a much better place. This week with family has provided us all with a much needed break from the monotony of appointments.

Thank you Chad, Katie, Brett and Morgan for flying out to California and reminding us of all that we have to be thankful for! Lake Tahoe was the perfect place to spend the first half of the week and we could not have asked for more beautiful weather! The three older kids got along great - spotted some bears, watched the Kokanee Salmon spawning, and even hiked to a castle. Xander held his own in the Ergo and Kelty!

The second half of the week was filled with more fun and sugar provided by the Jelly Belly Factory Tour as well as an exciting private tour of Nic's new jet! Needless to say, I have two exhausted boys, one exhausted husband, and a very tired mommy in this house - but it was well worth it!!

Tomorrow is our day to recuperate before we hit the ground running next week...

(Uncle Chad with Cole, Brett, and Morgan)

Answers

Last night, as I was lying in bed, exhausted and needing sleep, my mind would not be still. I was so close to just rolling out of my comfy blanket and sitting behind the computer screen, attempting to make sense out of the different feelings and thoughts I had swirling around in my head. Needless to say, I did fall asleep and obviously never made it down to the computer or all of you would have had something fun to read this morning - that is certain.

I think the reason I have so many conflicting emotions and feelings this morning is that in a few short hours we have our follow-up appointment with Xander's Neurologist to get the results of the MRI. I know that I have been waiting for this appointment for weeks, but now that it is almost here I am so nervous. I'm not sure why, heck I don't even know what they might be able to tell us from an MRI, but it scary. It's scary that we may have some answers. It's good, but it is scary.

I think knowing what we are dealing with, in a way, will help me accept where we are, where we have been, and where we are headed, but I also think that knowing what is going on - if we do find answers to some questions today, will be hard, because all of the hope that things might change and that he might wake up one day and be like any other 10 month old baby will be dashed.

Don't get me wrong, I know that even if we don't find answers today, he won't wake up and all the sudden be developmentally on track, but it seems that even when it makes no sense, if there hasn't been a doctor who has told me specifically he will never be able to do something and will always be behind, you keep holding that sense of hope that he is just delayed and it may take longer than normal, but eventually he won't be any different from any other child.

Crazy, I know - but that small amount of crazy sometimes keeps me sane, and what am I going to do when crazy is no longer an option??

I can tell you what Xander will do. He'll find a way to make things happen - he proved that all too well this morning as he began rolling around the living room. Yep - I guess some of our physical therapy has started paying off because he can most defiantly roll from his back to his front now and although he still can't sit unassisted, he most certainly is going places!!!

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)