Are you sure Thursday wasn't April 1st?

If someone had told me it was April on Thursday, I wouldn't have doubted them for a second.

Nic and I headed up to Sacramento for our ultrasound with the specialists, hoping for only a diagnosis of a cleft lip, but preparing ourselves for additional concerns as well. Because, in all honesty, it seems like with our babies its always been one hurdle after another.

Don't get me wrong, I love hurdles. They might not always be easy to get over, but they keep me on my toes and they are constant reminders of the amazing children I am blessed to love and who love me in return. Besides, I'm pretty accustomed to them at this point. In fact, I'm not sure what my life would look like without them, which is why it's always suspect when one gets removed.

Which brings me back to our appointment. It couldn't have started any better. The doctor who saw us was the same one who delivered Xander after I was transferred to Sacramento for my emergency c-section almost two years ago. He is amazing under pressure and I have full confidence in his ability and knowledge as a physician, which instantly put me at ease - not an easy task when the doctor is trying to predict the future challenges of your unborn child.

Nonetheless, it was the best possible scenario from the moment we walked into his office and it only got better. During the ultrasound he explained everything to us and walked us through each organ, structure, etc... finding everything normal. Finally, he zeroed in on the cleft and like some crazy April Fool's joke said "I'd bet the farm on it that this baby doesn't have a cleft".

Umm... "What?"

Nic and I were in shock. We still are. How can a cleft be there one minute and then 2 weeks later not be? And what kind of ultrasound techs and doctors (there were 4 total, all conversing, at our first appointment) wouldn't be able to double check one another close enough to raise a red flag that "hey, maybe we don't have a good enough picture or the proper angle to make that diagnosis at this point"??

So, besides my frustration and complete loss of respect for the ultrasound techs and doctors in that department at our base hospital, I am happy to say that a hurdle has been removed for our little one and us!

Although Nic and I are keeping our celebration to a minimum, because we both fear it might be some cruel joke. I am happy to share that we have returned to the status of a non high-risk pregnancy and a healthy baby.

So, thank you everyone for your support, encouragement, prayers, and understanding over the last couple of weeks. We look forward to sharing the rest of our journey with you - and hopefully, the hurdle that has been removed didn't leave a giant chasm in its wake. (Keeping our fingers crossed)

Round 3

"All aboard for round 3"

I should have seen it coming, maybe then it would lose some of its shock value. But I didn't. I figured we had paid our dues in a way, but the cards are yet again, stacked against us from the beginning. It seems that we are now on round 3 for babies who require specialists from birth and round 2 for clefts.

I'm 20 weeks with baby 3 and Friday was our "gender" ultrasound. We've chosen to not find out the sex of this baby, but the ultrasound did reveal that we will be having another child with a cleft. I wish that I knew more at this time, but that's really all the information we have until we see the specialists in Sacramento sometime in the coming weeks.

I'm just writing to ask that you keep us in your prayers. Hopefully it will be nothing more than an isolated, cosmetic issue like Cole's was, but there's always that fear with a cleft that it's related to a larger syndrome, which we may not know until birth.

While processing this during the last few days and going through, yet again my short grief period of losing that "perfect" baby we all hope for, I will say that I've found my peace. As I stated before, this baby will be perfect for us, regardless of his or her needs or challenges.

I'm also lucky that I don't have to worry about all those things I remember fearing with Cole. I know that my baby will be beautiful, cleft or not, and I won't have a problem loving them for who they are. In fact, I'll probably be upset after the cleft repair surgery when they bring my baby back to me and he or she no longer looks like the child I've fallen in love with.

For those parents who've never experienced a cleft repair or a surgery that alter's your child's appearance, it may seem hard to grasp, but it's difficult to hand over your "perfect" baby to doctors who will return him or her looking different, in pain, and unable to show you that huge smile you've grown to love.

I know it won't be easy and the next few months will have their moments of difficulty. But I take solace in the knowledge that we've been there and done that - I already know the drill. I know the surgeons, I know the hospitals - heck we were just in that same waiting room 2 weeks ago - they should engrave our name on one of the benches!

But all joking aside, we are in good spirits and can only look forward to another child who will bless our family with their uniqueness.

Beauty

Busy life, that's my excuse for not writing in so long. There have been hundreds of times I've thought about sitting down and updating everyone on our lives and family, but I like to wait for ideas and events in my life to lead me to a new understanding before I compile and analyze them for all of you to see. Like I've shared before, this blog is a type of therapy for me and a way to keep all of you, both near and far, updated on our family's journey. 

The last few months have been filled with fun, exhaustion, and adjustment. First Daddy left on a deployment at the end of July, then Grandpa Gary, Carolyn, Matt, and Mike visited for a busy weekend in Lake Tahoe. That was followed by Grandma Charla and Jim and then a last minute surprise weekend visit from Aunt Shelli and baby Sidney. Finally, after Daddy's deployment was extended a few weeks, followed by another delay with the actual return jet, we welcomed him home the second week of October! 

As all of my military friends know, homecomings are filled with excitement, but also challenges as we all readjust our lives, roles, and schedules. It's all very exhausting to say the least! 

The last couple weeks with Daddy home have been filled with trips to pumpkin patches, apple picking, football, and family time. But along with all the fun, we also had to dive back into life and reality, which often involves the not-so-fun things as well. We faced another surgery for Xander last week, which is always frightening and difficult, but I'm happy to say that he was again a little trooper and is on the road to recovery. 

There are just so many things in life that happen on a day to day basis. Things that we take for granted, but when you truly sit down and examine them, each hold their own miracle of sorts and it's a wonder how we never seem to notice until something reminds us to look at the small stuff. Things like surgeries, illnesses, deaths; these all take us aback and for a moment we appreciate the beauty around us and realize what we've been given and what we truly appreciate in life. But then, we slowly slip back into routine and life moves on. We become caught up in the day to day grind where we lose sight of those small things, until the next bump in the road forces us to, again, slow down, look around, take in our surroundings, and be thankful for what we have. 

It's a vicious cycle if you ask me. Life would be so much more joyous and full of pleasure if we could all just stay in that place of appreciation, understanding, and love. But we get worn down and tired and it's not until we're forced to slow down that beauty emerges all around us, that beauty we were just speeding past, not even giving a second glance towards the day before is suddenly so brilliant. 

To me, this is the joy that defines raising a special needs child. To others it may seem that life is full of adversity and disappointment. But in reality, life with a special needs child is slowed down in a way. Through their eyes you see beauty everyday that the rest of us only notice in times of loss or hardship. It is in that beauty, that pure, uninhibited joy that you find the purpose of life on a day to day basis and are truly thankful that you've been given the honor to raise such an amazing human being. 

The idea for this blog came to me today while chatting with other families of MWS kids. And like I've been told and read a hundred times. Although I love Xander and would not change him for the world, there come moments where the smallest of things happens and you find yourself back in that dark place of loss and grieving that you thought you had escaped. Even though I've accepted and embraced Xander's uniqueness and his challenges. In the blink of an eye, something pulls you back. I have noticed that as time moves forward it easier to navigate my way out, but it always catches me off guard and I always hate that, even for a moment, I find myself longing for the child that I thought I was supposed to have.

A moment just as I have described happened only a few weeks ago. I had a friend over for dinner and she brought her kids. It was like any other night and we were all having a great time. She has a daughter slightly older than Cole and a son, just a bit older than Xander. Well, in the aftermath of dinner as we were all sitting around visiting. Before we knew it, the ottoman turned into a race track and Cole was playing with her little boy, racing cars and trains and airplanes around and around. It was a beautiful thing to watch. They were both having such a good time. After my friend headed home that night and I was getting the kids upstairs for bed, Cole asked if her little boy could come over to play again and although I had felt a tiny bit of sadness while I was watching them play, his question took me over the edge. Just like that, I was brought back to that place of loss and grief over the idea of the family I was supposed to have. 

Xander will be 2 in about 6 weeks and sometimes it kills me that he isn't yet able to play with his brother like I had imagined brothers playing at this age. When I was pregnant with him and found out we would be having another boy, I was so ecstatic. Picturing the trouble he and Cole would get into and the relationship they would have. And although I am so thankful for the relationship they do have, because it is stronger than I could ever describe, I still struggle with the idea of what could have been. 

Today a mother on my MWS group was at a low point with her daughter's struggles and I found myself offering supportive advice and encouragement. Because that is what we do. When we're at a low point, a time when we sometimes wish we had had that other child, we share our struggles and then we rally around each other and remind one another of the wonderful gifts that are our children. And it helps to be the one pointing out all of their strengths. It also helps to know that we aren't alone and those times of loss sneak up on each of us and it's ok. 

So, I want to take a moment to thank all of you. My friends, family, MWS family, everyone for all the support and understanding that you have shown us on our journey and continue to show us. Life isn't easy for any of us, but if we remind ourselves to slow down and enjoy the beauty in our surroundings and the simple things in life, then Xander will have taught us all a lesson. Probably the most important we will ever learn.  

Elephant in the Room

To call this a whirlwind summer would be an understatement. We've been going non-stop, but now that Daddy's left on his deployment and we've gotten things back in order from our Michigan adventure, I feel like we're starting to get into the swing of things and set up a routine of sorts. Thankfully, the kids don't seem to be nearly as impacted by our inconsistency as I have been!

Xander has been doing great work, even though he took a 3 week hiatus from all therapy and doctor appointments.His newest accomplishments include transitioning from the floor to sitting, getting on hands and knees and rocking while lifting and weight-shifting hands (we're almost to creeping on hands and knees people!!), sitting on our bottom and using our heels to spin in circles (have to make sure we don't miss anything!), and I'm also happy to report that he's been doing so well with different food and textures that our feeding therapy has been cut back to once a month, instead of weekly.

WOW - can you believe it!! It's only been about a month and a half since my last post and I have four significant things to share - that's lightning speed around here people!! I couldn't be happier and more proud of him.

Michigan was such a breath of fresh air for all of us and we have countless friends and family to thank for that. Cole was in heaven with room to run and explore at his own pace. He had so much fun with family that it breaks my heart we only get that chance once or twice a year - but when it comes around it is well worth the wait!

Now - to address the elephant in the room... well not really as far as you guys are concerned - but as far as I'm concerned, for sure!! I've been putting off writing a blog since I got back from Michigan because I didn't want to spill the beans too early and I couldn't focus on my thoughts and feelings without sharing them! So, here's the deal - the morning before we flew back to California, we found out that #3 is on the way!!

We couldn't be more thrilled! Nic was able to go to the first appointment with me before he deployed, which ended up just being a double edged sward, because they tried to do an early ultrasound, but couldn't see the baby and detected a uterine hemorrhage - which had me really concerned... and then he had to leave... But, I'm happy to report that last week I had a follow-up appointment and was able to see the baby and hear the heartbeat and the hemorrhage is shrinking!

Whew - can I just say that with this baby, I really hope that's my scare!! Cole shocked us all at the 20 week ultrasound when we found out he was going to have a cleft and we spent the next 20 weeks on pins and needles wondering how severe it would be and if there was anything else associated with it. Xander's pregnancy was very uneventful until that last appointment when they went to take his heart rate and it was 223 - off to Sacramento I went to deliver a baby and spend 2 weeks in the NICU - no warning or indication anything was going to go amiss. So, little baby number 3 - let this be your scare for us and the next 32 weeks can be smooth sailing!!

But, regardless of what this pregnancy has in store for us, I can't wait to meet and love whatever child we are blessed with.

The last few weeks have really gotten me thinking - I always hear pregnant women say that they just wish for a healthy baby. I used to say that too, but this time around I have finally realized, that if my wishes had been granted in the past, I would have never ended up with either of the amazing children I have today. So, I'm trusting that we will be blessed with the perfect child for us. Because healthy or not, this child will join our family and help shape who we are and who we'll become. I can tell you with certainty, that had my other children been born without challenges of their own, we would be a different family altogether. A child with special needs doesn't take away from a family, they add a whole new dimension that would have never before existed.

So for that, I thank my lucky stars that my wishes with the first two were not granted and I look forward to meeting the perfect child for us in March of 2014!

Stirring the Pot

I've found over the last year and a half - yes, can you believe it? - in three short days, well almost 2 now - it will be exactly 18 months since Xander so unexpectedly came into our lives. He has given us so much to be thankful for and allowed us to meet so many wonderful people that we never would have crossed paths with otherwise. We will forever be indebted to him for the lessons he has taught us and I can't even fathom what the future holds, but I know it will continue to surprise and inspire us all.

Now, back to my point: 

As I was saying, over the last year and a half, I've noticed that my actions have been like the ebb and flow of the tide. There have been periods of time where I've sat back and let referrals, therapist appointments, specialist follow-ups, and tests for this or that come and go as slowly as the medical community sloths them along. Inevitably, I get fed up with the lack of progress and the slow pace and I jump in and take charge. 

I'm not ashamed to admit to either action. I think there are times where I need to step back and take a break from the constant list of phone calls, follow-ups, and trying to move referrals a little faster and get processes stream-lined. It's more of a defense mechanism for my own sanity and to remind myself that there is so many more important things to attend to. My two amazing boys being pretty high on that priority list. After all, what good does it do them if I spend all of my time advocating for them and no actual quality time with them? So, I take breaks, I sit back, and I wait for things to happen. 

And wait...

Still waiting - yeah, you get it.

Then there are the times where I decide that I've rested, recharged, and I'm ready to stir the pot. 

Today was just the day for that. 

I decided that after leaving a message two weeks ago and still not hearing back to schedule an appointment with a new geneticist, since our first one didn't even take the time to educate himself on his own report when we went to our follow-up appointment 2 months later. (Sorry, still annoyed at that one) that I would do more than leave another message. And, since I can't seem to get anywhere with our insurance company in regards to the complete genome sequencing that has been requested, then maybe I need to head in another direction. 

So, today was a day of research. I searched and applied for studies that I might be able to get Xander enrolled in, which will provide sequencing and testing. I requested information from the RARE disease organization about studies and funding for testing. I researched the cost of specific testing that would confirm our suspected MWS diagnosis and where I could get them done. And finally, I decided to go directly to the top - aka the founders of MWS with my questions and see if they would have any advice for who I should see in the Bay Area and what I should do next. 

Yep, it was a stirring the pot kind of day. And I'm happy to report that the reason I'm still awake and writing this blog tonight is because Dr. Wilson, as in Mowat-Wilson, was the first to respond to all of my inquiries.

I had attached photos of Xander in my e-mail describing my frustration and dilemma in pursuit of a definitive diagnosis. I was asking her for recommendations of colleagues she has in the San Francisco area that are familiar with MWS as well as testing information. 

Her opening statement to me is "I am absolutely sure that your son, Alexander, has MWS..." 

THANK YOU 

Although I've been sure of this for a few months now, it is so nice hearing it from none other than the founder of the syndrome that I'm not crazy! 

You have no idea how many doctors I have seen and told them we have a pending diagnosis of MWS, they ask for more information and when I tell them how rare it is, only 250 cases worldwide, they look at me like I've been smoking something that's not legal... if you know what I mean. 

It's extremely frustrating to know more than the specialists that are supposed to be helping to diagnose your child - so, tonight's affirmation was just what I needed. I'm so extremely humbled and honored that Dr. Wilson took time out of her busy schedule to respond to my e-mail, not only to confirm my belief, but also to recommend a local geneticist that is familiar with MWS and to tell me specifically what tests I should push for. 

This validation was just what I needed today

I could feel us falling into a lull and that's another reason I decided to jump back into action. I know myself and lulls are never good. That's when the emotional roller-coaster of having a special needs child really takes off and you feel as though everything is out of your control. It happens so fast and I've been in such a great place for quite awhile now, I wasn't ready to jump back on that coaster and ride it down the next hill. 

Thanks to Dr. Wilson, I think I can put that ride off for a little longer. I now feel like I have someone on my side and the next time a specialist of some sort or another gives me one of those looks, I'll show them the e-mail from the founder of the syndrome that certifies my "crazy talk". 

Now, on to fight another day, that is after I get some sleep... Goodnight everyone

 

Insanity

Einstein defined Insanity as "doing the same thing over and over again and expecting different results."

Lately, when I think of this quote, I find myself wondering just what Einstein would have thought of parents with special needs kids. Not only do we do the same thing over and over again, but we do the same thing over and over without expectations of change. Sure, we have a small glimmer of hope that eventually something will shift and that all of our hard work, persistence and determination will not go unnoticed, but we learn early that expectations often lead to hear-ache and disappointment and we tend to steer clear of them. 

It's funny. With a typically developing child you hold them to high, almost unattainable standards. Not only do you want them to accomplish the things you have accomplished and value the things you value, but you expect more of them than you do of yourself. You expect them to perform at an even higher level than you did and you expect them to learn from your mistakes. 

But, honestly  who of us actually learned much of anything from stories about our parents' mistakes? Not many. 

We are all individuals and in struggling to establish our own autonomy, will make mistakes, hopefully learn from them, move on, and eventually try to pass that knowledge down to our kids. Who, in turn, will think we're crazy, until they make the same mistake on their own time. 

It's a cycle that repeats itself generation after generation. Yet, our instinct as a parent is to put our young child up on that impossible pedestal and convince ourselves that is where they will stay, never falling short of the goals and objectives that we set for them before they were even born. 

That's where I find being the parent of a special needs child gives me an advantage. I've already had it thrown in my face that Xander will never meet most of the goals I had arbitrarily set for him. Sure, it wasn't fun and it was hard to face, but now that I have, I'm free to love him wholly and completely for who he is. I celebrate his accomplishments with tears in my eyes because I am so proud. I don't get disappointed  because I'm no longer holding him to that unattainable standard. 

This week, when he actually held a piece of food in his hand and brought it to his own mouth, without guidance, I could not have been more proud. I get to celebrate each of his accomplishments on a scale that has no context and it is amazing. Had he been a typically developing child, I would have gotten excited, cheered for a few minutes and moved on. But this is monumental for him. It means that he's on the road to independence. Something we hoped for, but never expected, because, with Xander, we don't expect, we accept. 

In fact, this frame of mind that Xander has shown me is so invaluable that I'm working to shift that same mindset towards Cole. As a typical 3 year old, he's pushing buttons and exploring boundaries, which can be extremely frustrating. But, I've begun to more often remind myself of how wonderful and unique he is. His strong-will and free-spirit will, one day, certainly enable him to take advantage of many opportunities in life and they need to be celebrated as strengths, even if they are a bit challenging from a parenting perspective. 

So, here again, I find myself at this all so familiar place, where I am thanking Xander for teaching us more about life, parenting, and acceptance than I ever thought a 1 year old would be capable of. How blessed we are to have him in our lives. 

I WILL RUN...

In response to the horrible and senseless act of violence at the Boston Marathon yesterday, I am going to deviate from my normal subject matter and style of writing, so please bare with me...

I WILL RUN

I am a runner
I am a marathoner

By definition:
  I am resilient
  I overcome adversity
  I accomplish what many say I can not do

I will not be intimidated
I will not be terrorized
I will not stop doing what I love

Today and everyday:
  I will endure
  I will persevere
  I will lace up my shoes
  AND I WILL RUN

                ~Jami Rowe

Embracing Individuality

Our family has had a busy, yet wonderful past couple of weeks! Daddy returned from his deployment, Xander began sitting unassisted, and we spent a few days exploring the Mendocino Coast!! It doesn't get much better than that. And our boys couldn't be happier, which makes me one happy Mama!

I so wish that we would have been permitted to use our cameras as we welcomed Nic home. It's moments like that, when you see uninhibited joy in the eyes of a child, that make you remember what life's about. We were able to watch daddy's plane land, walk across the ramp to meet the jet, and welcome him as he came down the stairway. All while being buzzed by C-5s doing touch and goes. It was heaven for one little 3 year old boy!

As Nic came down the stairs, Cole's face lit up - he ran as fast as he could past the line of commanders welcoming the troops home and started up the stairs, meeting Nic before he even got on the ground! I realized that as the boys get older, the deployments will continue to get harder to justify and they will struggle more with the reality of daddy being gone, but the reunions will just keep getting more exciting and magical.

Xander's big moment came on Wednesday at music class. Our little man sat unassisted for most of the 45 minute class! His back was straight and he self-corrected as he came close to losing his balance a few times, all while playing with instruments. I almost started crying. I couldn't have been more excited and proud of him for all of the effort that it took to accomplish something that comes so easily to the typically developing child!

The cherry on top of this exciting week was a much needed family getaway up the coast. We stayed in a cute little cottage, on a bluff overlooking the Pacific. The kids had fun playing on the beach and hiking in the redwoods. Nic and I even fit in some whale watching from the car while the kids napped in the backseat. It was the perfect opportunity to regroup and remind ourselves how much we have to be thankful for.

Amid all of this excitement and fun, I also started reading a new book: Far From the Tree. Even though I've just finished the first chapter, it has already inspired me to question aspects of society with regard to parenting and allowing our children to develop their own identity.

As with any book, an educated person takes it with a grain of salt. You examine and question the ideas presented, knowing that the author is motivated by their own biases and beliefs. The facts outlined are probably those that support said beliefs and like anything, there are two sides to the story and contradictions to the author's position are most likely omitted from the book.

Regardless, some of the concepts have been excellent food for thought and are teaching me to appreciate my children for who they are as individuals and not for who I want them to be. One excerpt, in the first few pages really hit home: "Though many of us take pride in how different we are from our parents, we are endlessly sad at how different our children are from us."

Is it not true? That each of us strive for our own independence and autonomy, yet when we have a child the first thing we do is look for physical attributes or personality traits that reflect ourselves? We want so much for our child to be an extension of us and enjoy the things we enjoy and value what we deem important. But they are in fact their own being.

Many people who are unfamiliar with adoption and blended families have trouble imagining how parents can love all of their children equally. It brings us back to the age old debate of nature vs. nurture. What has a bigger impact on our lives and if we raise a child that is biologically different from ourselves, how much control do we have over who they will become?

But in reality, how much control do we have over who our biological children will become? I would argue that perhaps a different amount for each and every child on this planet. We, presumably, will never have an answer to the debate, because due to our own free-will and resiliency, we all interpret and react to events differently.

What is devastating for one person is met with grace and acceptance by another. Each of us is a unique individual, as are our children. Therefore, an adopted child may end up emulating and embracing the lifestyle and choices of their adoptive parents much more than a biological child of that same family would.

Perhaps that is why when a child is born with any condition that showcases the reality that they will never be an extension of oneself, it is so difficult to accept. As a parent, you must set aside all of the dreams and expectations you had developed and learn to see them as an individual with their own strengths and abilities. But it's a process and it is hard.

I think in reality all parents go through this same transition, where you come to understand that the child you created is not you, but an independent, free-willed being that will make some decisions you don't like or necessarily agree with in life.

But, those of us who have children born with special needs are thrown into that reality instantaneously and we must work harder to process it in a much shorter time frame, so we can move on and learn to love and accept the child we have for who they are.

Parenting is exciting, joyful, difficult, stressful, exhausting, and fulfilling 

As with life, you must take every moment in stride, learn from your mistakes and revel in your accomplishments. It is my belief that once you let go of those desires to "reproduce" yourself in your children and embrace them for who they are, you will truly understand what a magnificent individual you have created.

In short, provide your children with a happy and stable environment, do your best to teach them acceptance and humility, and love them unconditionally. Then, sit back and celebrate the unique person they blossom into.

Judgments

Making split second judgments is innate in human nature. 

I always find it funny when people claim that they don't judge others or you hear those sayings "Don't be quick to judge." Well, guess what - we all make thousands of split second decisions about one another within the first 30 seconds of meeting. And, the biggest shocker - THERE IS NOTHING WRONG WITH THAT!

That's right - I said it. There is nothing wrong with judging one another. In fact it is imperative to do so for your own well-being and the well-being of those around you. It is when we don't provide education to our children about overcoming those initial judgments and stereotypes that ignorance prevails. 

But, education leaves a fine line to tread. Although you don't want your children treating others with disrespect, you also don't want them afraid to judge. 

In elementary school, I lived in a fairly isolated farm house on a road with very little traffic. We didn't have any neighbors within sight and our driveway was arguably long. There was no clear line of site to the road from our front door, as our unattached garage obstructed the view. Luckily, for my parents, I was the middle of 3 children and we were each just a year apart in age. Meaning that we looked out for one another and being from a small town, there never seemed to be much of a reason for concern anyways. 

One morning, that to this day stands out in my memory, I was the first out the door and headed down the driveway to the bus stop. Spring was in the air and I was anxious just to be outside and enjoy the fresh air before the bus arrived. As I was waiting, a truck that I didn't recognize drove by. Initially  I didn't think much of it, because there were often some random people that drove down our road after they missed the turn at the intersection of the two main highways just a quarter mile away. 

When I became concerned is when the truck returned, driving very slowly, and stopped right by my mailbox. Positioning itself between myself and the driveway leading to my house. Although my initial instinct was to run, I didn't. Looking back, I distinctly remember being afraid of looking ridiculous to this stranger and placing unwarranted judgement upon someone who didn't deserve it. 

After the truck approached, the man rolled down his passenger side window and appeared to be asking me a question, however his voice was very soft and quite. Knowing that something didn't feel right, I held my ground, refusing to move closer to the truck and asking him in a loud voice to repeat himself. He again, seemed to say something, but not very loudly, trying to get me to approach the truck so I could better hear him. At about that time, I noticed my brother rounding the garage and heading down the driveway. My mother was standing on the far end of the deck that wrapped the house, hands on her hips, watching the truck. That's when the man followed my gaze, realized he had been spotted, and sped off. 

I spent that morning making a statement to two local police officers instead of riding the bus to school. The man that I had encountered was feared to be the same who had abducted another girl in the area just two weeks prior to the incident.  

What I learned from that situation, which I will always carry with me, is that it is OK to make judgments and it's important to teach our children that when there is a perceived threat to themselves or others that it's acceptable to act. There is no reason they should feel guilty or bad about casting a negative light on another individual if the situation warrants. 

That's why I get angry when people classify all types of judgments into one category and encourage kids and adults to steer clear of them. 

In fact, there was some internet story circulating a while back that really caught my attention. If I remember right it was about a man, walking down the sidewalk and several people were being criticized for crossing the street to avoid him based upon his appearance. Well, I'm sorry, but if a man or maybe even a threatening looking woman, no matter race or size, is walking down a deserted street towards me, I sure as hell am not going to walk within arms distance of them if it can be avoided. I think that it's important to put your safety ahead of your vanity. And, yes, I may be making a harsh, split second decision that in all honesty, I hope isn't correct, but I would rather be safe, even if I might briefly offend the harmless person on the sidewalk. 

So, I encourage you all to educate your kids. Educate them that there are different types of judgments and not all types are bad. But, if the situation allows, getting to know others that might be different from them and learning that although the child next to them in class or passing them in the hallway might not communicate in the same fashion that they do, it doesn't mean they don't deserve a chance to be heard and understood.

I have seen so many references to and negative reactions towards making judgments in this world of special needs children over the last year that I felt it was important to explore the subject myself. Thank you for allowing me the opportunity to share my opinion on the subject. And please, educate your children that not all judgments are correct, but there are also situations in which they are not to be ignored. 

Finally, take the time to learn about someone different from yourself. What they will teach you might just be one of the most fulfilling and rewarding experiences of your life.

  

Hope

First off I want to say "Thank you", to each of you for your support and encouragement throughout our journey. It warms my heart to know that there are so many people who care about us and are willing to offer help in any way they can. Not only does it confirm that all of you are amazing individuals, but it reminds us on a daily basis how blessed we truly are and that we are never alone in this life.

Journeys are taken one step at a time and when you're facing any challenge it is good to remind yourself of that fact. Each day is a new day and I'm a strong believer that when you wake up every morning, you have the opportunity to decide how you're going to approach the world, what attitude you will carry, and if it will be a good or bad day. None of us know how long we have left, so why waste any time feeling sorry for ourselves or approaching life with a negative attitude?

Surrounding yourself with supportive and loving friends and family encourages a positive outlook on life and fosters a sense of happiness that is very difficult to erode. This journey has proven to me that we've been successful at that. Each of you have made us successful at that and so I thank you for your positive attitudes and compassionate, empathetic words.

I know that many of you have specific questions about Xander and his pending diagnosis. I've tried to include specifics here and there, but the main purpose of this blog is for me to process my feelings and share with you our journey in a way that is open, honest, and frankly, therapeutic for myself. I don't like to saturate my feelings with all of our individual specialist appointments and therapies, because this is a place for me to look at the big picture, the meaning behind our journey, and my purpose in it.

This past week has been strangely comforting. I've had some reactions that I would have never anticipated as a result of finding a place in the madness we've called life for the past year. One of those reactions has been a strong sense of motivation to make myself a stronger and healthier person. I realize that being a mom is draining enough, but when you couple that with the reality that you will need to be strong enough to physically and emotionally care for one of your children into their adult life, you feel a need to make yourself more of a priority now so that you can maintain your well-being in the future. I also feel that many times when people are faced with tough situations in life, this is the first area to get neglected. People get depressed and feel like there is no hope and they quit focusing on their health and happiness and put that energy into worry and fear, which doesn't do anyone any good and ultimately harms themselves and those around them more than necessary.

So, I'm motivated. Motivated to eat better, stay strong and healthy, and continue to make time for myself so that I can be a positive roll model for my family and we don't fall into the cycle of depression and self-pity.

Another emotion that has continued to make cameo appearances this week is hope. Not a hope that our situation will change or we will find a miraculous "cure". I'm in no way living in denial about the big picture. But hope that Xander will teach us so much more than we will ever realize.

When we found out Xander was going to be a boy, all I could focus on was how wonderful it would be for Cole to have a brother so close in age. I imagined the bond they would share and the trouble they would get themselves into. The adventures they would take and the sports they would play, side by side. One of the toughest parts of this journey has been trying to imagine how Cole will be impacted by our new reality. I fear that he will at times feel resentful. As he grows and realizes that Xander doesn't play like the brothers and sisters his friends have, I know that I am going to have to answer tough questions posed by an innocent child. These things and so many more scare me, because I'm not sure how I'm going to keep it together and try to comfort him when I, myself, have trouble justifying it.

But, after a brief moment of that gripping fear of the unknown, hope returns. I remind myself that Cole will never know different. He had no expectations of what life would be like with a sibling and Xander is all he knows. They already share a strong, loving bond that I see everyday in ways that might not be typical of two normal siblings, but ways that are nonetheless comforting and loving. Then I think how Xander will make him a better person. He will teach him compassion, especially for those that are different from himself. He will teach him to look at the world through eyes of joy and not to judge others. He may teach him even more valuable lessons of inclusion and humanity than Cole would have ever had the opportunity to learn otherwise.

So, as these feelings and others ebb and flow, I keep focused on what we do have control over and that is our attitude and energy for life. From my perspective, facing the day with a smile and a desire to see the good in all we encounter is the best way for our family to approach this world. And that is something Xander can help teach us all.

FREEDOM

Mowat-Wilson Syndrome, aka "MWS"

After all of our searching and the last 14 months of endless questions with no answers, this is where we arrive and I feel free. 

It's hard to describe how, as a parent, a diagnosis can be freeing even if it is cementing your fear that your child will forever be dependent on you for their most basic needs, but it is. 

On Monday night, after I tucked my two wonderful boys into bed and headed downstairs to go through the mail, I realized the envelop from Children's Hospital Oakland was not the paperwork needed to be filled out for our upcoming appointment with the Developmental Pediatrician, but actually the report from our appointment with the Geneticist that we had had about 2 weeks earlier. I anxiously read the document, shocked at how each physical feature of my child was evaluated, right there, in black and white. There must have been 5 different categories for his nose, ears, facial shape, etc... and each had a check after it, N for normal, AB for abnormal. The abnormal features were followed by short descriptors.

Initially, as I was reading through the comments, it seemed so harsh to evaluate and judge someone in such a raw and unrestrained manner. There were things commented on by the doctor that I had never even considered different about Xander. Features that I find very endearing, here, were described as abnormalities or faults if you will. As a parent, it's hard to look at your child, regardless of the circumstances and acknowledge the faults in them. In a way, the report triggered a desire to stand up and fight for him and argue that he is wonderful and perfect just the way he is and who are these people to place judgement on him and point out all of the things about him that aren't "normal". 

But, that urge quieted as I reminded myself that this was the purpose of the appointment - answers is what we were looking for and in order to get answers, we needed someone who could look at Xander's entire medical history, his physical features, and his developmental challenges in an unbiased way and try to come up with a logical explanation. No matter how harsh and raw the judgement felt.  

So, I continued to read and after all of the "pass/fail" categories were completed, two possible syndromes were mentioned by name that seemed to best fit with his evaluation. One was Kleefstra Syndrome. This is the one I discovered in my many Google searches over the past year. I had researched it and studied it and brought it to the attention of every doctor, so I knew this was a possibility  It was no surprise. So, I focused on the other syndrome. The one I had never read anything about. This new possibility  Mowat-Wilson Syndrome. What, I asked myself is that? So I started to google and facebook and search blogs. 

I've heard from other parents who've had kids with undiagnosed conditions that there can sometimes be an "ah-ha" moment. When everything falls into place and makes sense. Sometimes it comes when you meet another child with similar needs, for one parent it came when they walked into a doctor's office and saw a picture of "their child" on the cover of a magazine that was describing rare disorders. For me, it was the third post down on the Mowat-Wilson Syndrome community Facebook page. 

A parent had posted a video of her 18 month old son. I clicked on the video and started crying. I don't know how to explain it other than it was Xander. The child looked just like him, played by rolling side to side and scooting his knees under him to try to creep like him, sounded like him, and made the same small hand gestures as him. 

For the first time since we started seeing specialists at 3.5 months of age, I feel like he fits in somewhere. There are kids just like him - granted there are only about 200 diagnosed cases in the world, but they are there and we found them, and we aren't alone anymore. And that, for me, is freeing. 

The waiting game

I find it funny that as we grow older life seems to move so much faster and in the blink of an eye our babies are grown and we can't seem to figure out where the time went. Yet as we look back and we analyze where we are in life, we realize there was and is so much waiting.

Waiting for the baby you're expecting, waiting for that vacation you just finished planning, waiting for the birthday party next month, waiting for the weekend to arrive, waiting for a date night with your husband... 

Why do we waste so much time just waiting and not embrace the simple moments and days that get us to that grand finale?

I feel like I've been getting stuck in the waiting game too often over the last year. Xander has thrown us a curve ball that we never saw coming and I keep falling into the trap of trying to figure out where it's headed, but I'm beginning to realize that if I keep concentrating all of my effort on where it's headed, I'm going to miss the journey it's taking to get there. 

We finally were able to see a geneticist at Children's Hospital and Research Center Oakland today. After all the months that I've spent waiting for this appointment and hoping that it might point us in the right direction, we again have no answers. He suspects Xander has some kind of micro-deletion or chromosomal abnormality, but he was unable to tell us what it might be. He's simply never seen another case like this, so he's going to consult with his colleagues and see if they have any educated guesses or know where to go from here. 

So, again, we are stuck in the waiting game... 

But today, I unconsciously made a decision that surprised even myself. I find myself, after this appointment, completely fine with waiting and not having an answer. I think that I've finally hit the acceptance point in this process. 

I'm not saying that I won't have bad days or times when I see something in another child and I get angry that my child can't or may never be able to do what they're doing, but for now I'm in a good place.

I'm starting to find my niche in this new world of ours. I've started a support group/playgroup of sorts for special needs kids and families in the area. I'm hoping to reach out to others that might be struggling with a new diagnosis or the feelings of isolation that so often come hand in hand with raising a special needs child. 

It makes me hopeful that through the relationships I'm building in my new world and through my supportive group of friends and family that have stuck by me through this journey, I can embrace the day to day joys of parenthood again and quit trying to predict the future. Waiting is nothing but a waste of great opportunities to experience the simple joys on the road to somewhere unknown. And I'm done.