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)

    

Taking the Plunge

So, after living in California for almost two years now, I've decided to take the plunge and instead of continuing to apply and interview for positions, I am taking matters into my own hands and starting my own business. When we first moved here, I started applying for non-profit counseling positions, because the state of California does not grant reciprocity to licenses from other states... for any certification (or so it seems). So, that pretty much put a damper on the whole school counseling arena... Not to mention that because the state is in such financial strain, most counselors, librarians, art teachers, PE teachers, and athletic programs have been cut in the last two years. Long story short, after a few interviews I came to realize that it didn't matter how well the interview went or how great I felt about it. No one was going to hire an employee that was 7 months pregnant and would need some maternity leave within a few weeks. Also, based on my job history and resume, it doesn't take an employer long to determine that I am a military spouse that will eventually move. Pregnant or not - the military spouse status always presents a red flag, because most employers do not want to spend the time or resources to hire someone, train them, and then risk losing them within a year or two. So, I decided that it would be better just to wait. Wait until the baby was born, then wait until he had his surgery, then wait until I had my ACL reconstruction, then wait until Nic got home from his long deployment and Cole and I returned from our summer in Michigan. So, the career search was put on hold. Don't get me wrong, I LOVE staying home with Cole and I still love it. But, I'm also a very driven person and want to have my own successful career. So, ideally, I have been looking for something that would give me the opportunity to thrive in doing what I love to do - which is help others - while spending most of my time being a great mom to Cole! Well, last fall, I started applying for positions again and did pretty well at landing interviews and second interviews. However, because the economy is so bad and the state funding is being cut, the hiring process from resume submission to the 2nd interview took around 4 months!! Yes - 4 months!!! So, getting frustrated because we only have a little more than 1 year left in this program and then may be moving out of California, I effectively threw my hands up and said "I quit". To me, the process became a waste of time. I was sick of scouring the employment listings and completing cover letters and resumes, when I only have a finite time left in California. Besides, at this point, the reality is that most of these places will not hire me anyways, because we live by the base - they know the game - and they know if you tell them that you've been in California for two years... you won't be here too much longer. So, that was the end of my job search, but I still felt guilty for not contributing financially, because we could defiantly use two incomes - I'm still paying off my graduate school loan and California is just an expensive place to live. Low and behold, along comes a friend who has just decided to start her own business and after 3 months is doing amazing things! Her husband was 2 years ahead of Nic in his program. She is also an Air Force Academy grad and is still in the reserves. She has owned her own successful business, which she started in California and has worked incredibly hard at for 3 years, but once she decided to start working with Rodan + Fields, she sold her other business to concentrate on this because it has such a wonderful product, philosophy, and structure. After researching the business and product and it's successes, I decided that this is not an opportunity that I want to pass up. It offers the flexibility that I was looking for, I am able to set my own hours, work with a great, supportive team of individuals, and offer job opportunities to others that may be struggling with the same dilemmas as me. Dr. Rodan and Dr. Fields are dermatologists that graduated from Stanford and continue to work in the East Bay. They are well known for creating ProActive, the acne treatment. Recently, they created a new line of skincare products that address Anti-Aging, sun spots, and minor blemishes. The products are amazing and the results are astounding. The company has been continually recognized the last two years because of how fast it is growing and the popularity and effectiveness of the products! These are the facts that caught my eye, but what really hit home were the personal success stories of other consultants in the business. In as little as three months, people are turning their lives around, paying off debt, avoiding foreclosure, and securing their financial future. One of the first steps as a new consultant is to find your "why." Why is it that you want to become successful at running your own business and gaining financial freedom. Well, in our training the other day, it hit me. I knew that I wanted to stay home with Cole and still be able to contribute, but that is not a concrete goal or reason - that is a feeling. Then it hit me... what do I really want right now that I can't have because of financial constraints? Well, two weeks ago, my ob doctor told me, that we should look into In Vetro fertilization in order to add to our family. My immediate response was that we can't afford it. The insurance will not cover it and although we are financially secure on one income, throwing tens of thousands of dollars at a procedure that has no guarantees is not an option at this point. So, that is my goal. I am aiming high and if we have not gotten pregnant by the start of 2012, I will be able to afford In Vetro and hopefully add to our family!!

Treasure the Moments

As I was casually browsing facebook on my phone earlier, I noticed a posting by one of my old friends and co-workers in Spokane, thanking everyone for their prayers and support during this time.

So, of course, being a facebook snooper as we all are, because why else would we be on facebook? I went to her page to try to figure out what had happened.

As I read back, at all of her wall posts over the last week, I began to cry. I felt so bad, that first of all I hadn't heard the news and second of all, that I have been spending all morning annoyed at the fact that Cole is sick and I can't take him outside to enjoy the sunny weather.

My friend's youngest child was exactly one week younger than Cole and last week she passed away. It sounds as though they are attributing it to SIDS.

I am speechless. What do you say to someone who has suffered such a loss and in such a sudden and unexpected way?

It causes you, as a mother, to question if you would be strong enough to survive something like that. It also puts things in perspective... Who cares if Cole isn't feeling well or puked on me twice yesterday. I am blessed to be his mother, caring for him when he doesn't feel well. Even when I am covered in puke, I feel how much he loves me as he clings to me when he doesn't feel well, needing to be comforted. How selfish am I that I'm annoyed he's not feeling well enough for me to go on a run...

Life has it's way of showing you the things in life that are important and the things that are not. My son, my family, my friends... those are the important things and I plan to embrace each moment I am given with a new appreciation and enthusiasm.

Challenges

Alright, so as I was driving to UC Davis today I had all these great ideas forming in my head for what to include in my blog... now that I am sitting at the computer, finally, where have they gone??

Life is always interesting like that, you have all these great intentions and plans and somehow they never seem to work out quite like you pictured... I'm not saying that it is always worse, in fact there are lots of times that what you plan for and hope for turns out better than you ever expected it would.

Cole is a prime example! I spent many months, just about two years in fact, planning and hoping to get pregnant and once it finally happened, I couldn't have been more excited. But then starts the waiting game, where you try so hard to picture what that little baby will look like, will it be a boy or girl, will it be healthy?

I was lucky with my pregnancy, in terms of how I felt. I had it fairly easy and all seemed to finally be going as I had planned until the 20 week ultrasound. Thank goodness Nic was home for that one, because after 3 hours in the exam room, changing positions countless times, and three technicians later, we discovered that the perfect baby we were waiting on was not coming.

That was the lowest point in the whole journey, not the months of waiting and the countless negative pregnancy tests, but finding out that everything you had been waiting for may not be coming at all. I only say this because at the time of the ultrasound they detected the cleft lip - which yes, is no big deal. But in many instances a cleft lip or palate can be a symptom, if you will, of a much larger problem or set of problems and that was our fear and the fear of the doctors.

So, after having a few good cries and sharing the devistating news with our families that the baby wasn't going to be "perfect" and may have many more problems, yet unknown, we saw a specialist in Sacramento.

By the time the appointment with the specialist rolled around, Nic was TDY, so I went by myself to Sac to see the genetic counselor and the specialist. She did another ultrasound on me and was pretty happy with the results. We were incouraged by the fact that the cleft appeared to be unilateral and the palate may be intact. The other scans performed looked pretty promising that the baby was otherwise growing normally and appeared to be healthy.

The next 18 or so weeks of my pregnancy were spent with this little tidbit of information floating around in my head. I scoured the internet and books for information on clefting. Mostly I wanted to find photos of kids with clefts, before and after the surgeries. It sounds horrible, but I was trying to prepare myself for what my baby would look like when he was born. I was scared that I would have difficulty bonding or think he was ugly. I didn't know what to expect, so I wanted to prepare for the worst and hope for the best.

I contacted the Craniofacial Abnormalities Panel in Sacramento and scheduled our first appointment for 10 days after my due date. I drove to the office and picked up my binder of information and special bottles, just in case his palate was involved or he had feeding difficulties. Keep in mind, this was all before my third trimester even began. If I couldn't fix the problem, I was certainly going to plan and prepare for it!!

And again, those revised plans and hopes turned out better than I could have ever imagined. Cole was born with a unilateral incomplete cleft on his left side. His palate was normal and he had no difficulty feeding. All my worries about having difficulty bonding were dismissed the second I saw him. The first time he was placed on my chest, that little guy lifted his head and looked right into my eyes and I was done! It's difficult to explain the love you feel for your child and what is even more difficult to explain is how you find that love in an instant, like it has been waiting there all along.

Now, we are at that point again. Planning and waiting and hoping.

The last go around I didn't share with anyone that we were trying to have a baby. I kept hoping it would happen and bottled up my emotions as it felt like everyone around me was getting pregnant and having babies while I was still waiting... well here we go again, but this time - lucky you!! - I'm going to keep all of you in the loop so for one: people will stop asking when we're going to have the next one; and two: I won't feel so isolated, because I know that there are others out there, who have struggled to get pregnant or lost a pregnancy or a child.

This time, we have what I would already consider to be a better doctor. Even after all of the fertility drugs that I was given to concieve Cole, I never really knew what was wrong and why it was taking so long. Well, last week I had an ultrasound that revealed that I have polycystic ovaries. Wonderful!!! Not really, I had a good cry after finding that out too and then I went to one of my friend's and we cried together!

Basically, my bloodwork looks good, so there is no reason to believe that I have Polycystic Ovarian Syndrome, but I do have ovaries that look like that. My right one is coated in or full of cysts (not sure which is a more accurate discription) and my left has some, but looks much healthier. What does this mean? Basically, it means that I do and will continue to have difficulty ovulating regularly, normally, and in time for the egg to be healthy. So it will be difficult to get pregnant, if we do at all.

So, back to those plans I've been talking about. Those 3 or 4 kids that I wanted to have, close together like I was with my siblings... Let's just say it is not looking very promising at this point, but I'm not giving up hope. In fact, I am starting to believe that these struggles with fertility have given me a greater gift than I could have ever imagined.

I think because we had to wait and plan for so long with Cole, I was able to embrace every aspect of him that much more. Yes, I was still exhausted when he was an infant and I had my moments of wanting nothing more than a full night's sleep, but I had patience and was able to maintain a level of happiness and fullfillment that not many new moms can. I was greatful for each day with him and wasn't going to take any of it for granted.

Now that we have discovered this new challenge, I find myself embracing motherhood even more and savoring each new milestone and amazing discovery because I have realized that I may not be able to watch another child grow up. I will continue to hope that our family can grow, but if it isn't meant to be I want to know that I didn't miss a beat of Cole's life and I was able to enjoy every stage to the fullest.

Thanks for letting me share some intimate details of our life with you... keep your fingers crossed that someday Cole will end up with a brother or sister, but know that if that day never comes, we'll be happy with the blessings we've already been given in Cole.

We're Back!!!

Wow - I almost forgot that I even started this page... let's just say that the last year and a half have been pretty busy!!!

A quick recap of our life would include two deployments and countless TDYs for Nic, our son, Cole, being born, me having an ACL reconstruction surgery and spending the summer with family in Michigan while rehabbing my knee.

I can say that Cali has so far provided us with many adventures and challenges, none of which have been the least bit boring! We are constantly on the go and exploring new areas. The photo I am attempting to post on the blog (forgive me if I don't figure it out) is of Cole and I hiking in Yosemite National Park - a great trip we took as a family - spending two nights in Yosemite View Lodge and hiking/snowshoeing in the off-season. What a great time to go - not many people and beautiful scenery.

We just returned home from a week in Florida, visiting family and enjoying the Tampa area. We were also able to view our second space shuttle launch, Discovery - this is also Cole's second shuttle launch - miraculously, we always seem to be in Florida when we hear about a launch - so we drive to the Space Coast and take advantage!!!

Nic turned 31 yesterday, so we spent the morning and early afternoon wine tasting in Sonoma Valley. Not only did we check out a couple new wineries that we thoroughly enjoyed, but we were able to visit a couple (Viansa and Cline Cellars) that we had not been to together since our wine tour from San Francisco in November of 2007 after I completed the Nike Women's Marathon... long before we knew we would be living here!!

I am continually amazed by coincidences such as this in our everyday lives. You would imagine that moving as often as we do and living thousands of miles from family that one would find themselves lonely sometimes, but what those who are not in the military don't understand is that the community is relatively small and even when you don't think you know anyone - you always discover that your neighbor has the same good friend you do - even if you haven't seen that friend in years.

I think that is part of the reason I enjoy my life so much. I love being a mom and I am continually amazed by the things that Cole discovers and learns. But our lifestyle is unique and it requires you to meet new people on a daily basis and I have learned during this assignment to never pass up an opportunity to make a new friend - and that is priceless!

Before we moved to California, I was opposed to the whole idea of the military wife. I didn't think that Nic's being in the Air Force meant that I had to participate - after all, I didn't sign up for it... or then again, maybe I did and just didn't know it. But when you are working full-time and in grad school at night, the last thing I wanted to do was participate in events on-base - probably because we lived 45 minutes from base!! But after moving to California and being 5 miles from the base and becoming a stay-at-home mother for the time being, I have learned to embrace the military lifestyle and take advantage of all it has to offer. I have not been disappointed.

I have a great group of friends here, both military and not and it will be a sad day when we eventually have to pack this house and move, but I know that in time we'll run into many of these friends again.

Ahhhh - now I know that I haven't even begun to scratch the surface of all that has happened in the last year and a half, but I'm not going to dwell on the past - I will probably catch you up here and there through different stories that come up - but for now, let's focus on where we are and the future and hope that it is bright!!