A hard week.

It's been a hard week.  

If you know me, or have read my blog in the past, you know I do my best to be a positive person.  I enjoy reporting happy news, and try to put a positive spin on things even when it might be tempting to complain or let negativity take over.  So I've been having trouble figuring out how to write this post and keep it light.  There is a big part of me that just wants to scream and swear and throw things, or curl up in a corner and cry.  I've caught myself going down a negative spiral a few times this week, times when I am left with the quiet of my own thoughts. As much as I love Dylan unconditionally and enjoy every second of watching him develop, sometimes I just can't believe that this is my life.  When I think ahead to the challenges that we will face in raising him, and the things that will be so hard for Dylan and for our family, I just don't know how I will possibly be strong enough.  

So why this negativity?  Nothing has changed.  Dylan is still doing amazingly well, and continues to surprise me every day with new things he is learning and especially with his incredible personality (seriously, he is the sweetest 8 1/2 month old I have ever been around!).  But earlier this week we had an appointment with the country's (really the world's) leading expert on Microcephaly.  We have been anxiously awaiting this appointment for months.  Dr. Dobyns is a geneticist, neurologist, and researcher working out of Seattle Children's Hospital.  He has spent his career trying to understand Microcephaly and what causes it.  He is constantly finding new gene mutations that can be linked to this uncommon brain disorder and developing new genetic tests for families in our situation.  And whereas the geneticists and neurologists that we have seen in Portland have only seen a handful of patients with Microcephaly or read about it in their medical journals, Dr. Dobyns has seen kids from all over the country with little heads like Dylan's. 

So Brian and I knew going into this appointment that we could expect to get a more accurate prediction on what Dylan's future development would look like.  We have been warned of the developmental delays that we would likely see, and the potential struggles that Dylan will face, but never has a specialist given us their opinion with any level of confidence. There was always the disclaimer that the range is huge, and we have just been told to wait and see.  But since Dr. Dobyns has seen that range in actual patients through years of research, he was much more equipped to give us an honest and accurate opinion.

Bottom line.  Dylan's head is small.  Really small.  Which means that his brain is also small, about 50% the size of a typical 8 month old's brain.  When people talk about severe Microcephaly, they often refer to the number of standard deviations below average a head is measuring.  If you look at a growth chart, the 2nd percentile line is two standard deviations below average (50th percentile), and the 98th percentile is two standard deviations above.  Dylan's head falls between 5 and 6 standard deviations below.  Statistically speaking, that's really, really, REALLY small.  Dr. Dobyn's told us that kids can have small heads, and may fall within the "microcephaly" umbrella, with a headsize down around the 2nd percentile or -2 standard deviation range, and still have hopes for normal development.  But he assured us that when a kid is in the -5 or -6 SD range, they just don't have the brain capacity for normal development.  

He basically took my positive outlook, that little voice in the back of my head that keeps telling me "they are all wrong...Dylan will be just fine," and squashed it like a bug.  

The hardest part to accept was his actual prediction on development, based on empirical data gathered by watching hundreds of kids with Microcephaly develop through the years of his research.  He told us that most kids with heads in the range of -4 SD or greater do learn to communicate, but that their language peaks around the level of a three to five year old.  But...

Dylan will talk.  

I have been forced to remind myself of that truth a hundred times a day since I heard it on Monday, because I just can't get the statement "his language will peak at the level of a three to five year old" out of my head.  Jack will be three in a month.  He is a GREAT communicator for his age, speaking in full sentences and complete thoughts.  But I can't imagine his language staying at this level indefinitely.  But Dylan will talk.    

Dr. Dobyns also told us that kids with Microcephaly struggle to reach developmental milestones.  They eventually get there, but it takes much longer than typical kids.  He confirmed what the physical therapist at Dornbecher told us a couple months ago, that we shouldn't expect to see Dylan walking before he's two years old.  Dylan's high tone and muscle tightness was a bit of a mystery to Dr. Dobyns, much as it has been to the previous specialists we have seen.  High tone is not typical of a kid with Microcephaly, so Dr. Dobyns expects that Dylan will have an even harder time in developing his gross motor skills than most of the patients he sees.  But...  

Dylan will walk.

Again...the reminder.  It could be so much worse.  So what if we have to wait for it and work a lot harder to get him there, Dylan will eventually have enough control over his muscles to walk on his own.  And that is something we will never, ever take for granted.  

Talking and Walking.  Two of the amazing accomplishments that parents look forward to in raising young children.  Two of the achievements we love bragging to our friends about, two of the milestones that people are constantly asking about when you have kids around Dylan's age.  I'm not going to lie, I'm terrified of Dylan turning a year, or a year and a half, and having strangers in the grocery line ask me those seemingly harmless questions as they make polite conversation.  Right now, I feel like I have the potential to either burst into tears or start screaming and yelling in reaction.  My prayer is that by the time he reaches a year and the questions start coming, I will be prepared to answer with grace and with the confidence that one day Dylan will begin talking and walking.  

Anyways, Dr. Dobyns strongly recommended that we continue to be aggressive with therapy for Dylan.  He reminded us that an infant brain is a highly adaptable thing.  Dylan will never not have Microcephaly, but with a whole lot of support and specialized therapy, he has the potential to overcome some of the challenges he faces and make the most of what he was born with.  We have been seeing a physical therapist once a week since he was just a couple months old.  In addition we are receiving physical therapy through Early Intervention services provided by the state about twice a month.  When Dylan turns a year, we will begin evaluations to determine if he is ready to add both speech therapy and occupational therapy to the mix.  I have a feeling that taking Dylan to therapy appointments is about to become a full time job!

I'm really at a point right now where, emotionally, I'm torn in half.  My "positive outlook" tendency wants to only focus on the present and talk about how well he is doing!  He has made some huge strides in his physical therapy sessions this week!  And, on Monday I was reminded that Dylan will one day walk and talk!  But I can't stop myself from projecting ahead to what his future will actually look like, with the verbal skills of a 5 year old, an awkward gait, and a noticeably small head.  

A couple days ago Brian and I were discussing Dylan's schooling.  From what I understand, huge strides have been made in Oregon Public Schools to integrate higher functioning special needs students into normal classrooms, often with the help of an aide.  So I was reminding Brian that it won't be like when we were kids, and the "special education" classroom was a mysterious community all of its own that rarely interacted with the general student body.  I pointed out that maybe when his classmates were learning to identify states, Dylan would be in the back of the classroom coloring a picture of the United States...and I lost it.  Just the image of my baby, isolated in a world he will never understand or fit into, broke my heart.  I can feel so strong about the idea of raising Dylan, until the moment that I start to envision specifics of what it will actually be like for him to grow up so different.  And my heart breaks.

But Dylan will walk and talk.  And Dylan will LOVE.  And Dylan will smile and laugh and teach us to appreciate every blessing we are given in this life.  Nothing Dr. Dobyns told us can change that.  

So, there you go.  It's been a hard week full of negativity and feeling overwhelmed and hopeless, but I found my positive spin.  I knew I could do it :). 

Dylan will walk and talk and Dylan will be amazing.

Thanks for catching up with us!  Sorry it has been so long since I've updated.  I have a lot more to report on our appointment last Monday, specifically about a much more extensive genetic testing journey we are about to embark on and some interesting insights that Dr. Dobyn's had on Dylan's MRI and brain malformation, but those will have to wait for another night.  So, for now, Happy Valentines Day!  Kiss your kids and please take the time today to appreciate the simple things in life...Talking, walking, and the ability to love!

And so it begins.

Well...here we go.

This is a post I have avoided writing for a week and a half now.  Yes, I have been super busy (did you read my last post???), and, Yes, I have a thousand excuses I could come up with as to why I haven't taken the time to sit down at the computer in the past week, but the truth is...I just didn't want to put it in writing.  Once it's in writing, it's real. Once it's in writing, I have to start actually processing the truth.

But I've been pretty (overly?) open and honest up to this point, so it's only fair that I continue in that same manner.

This is a post I knew I would write eventually.  I didn't know how soon it would be, or how prepared I would be once the time came.  I'm not sure I would have ever been prepared though.  Because as hard as you try, there is no preparing yourself for the news...

For the first time last week, we were told that Dylan has started to fall behind.

Okay.  I know.  Over-dramatic.  He is only 6 1/2 months old.  There is wiggle room in the scale kids are measured on at this stage in development.  If Dylan was born with a normal-sized head, and if we hadn't done an MRI at his birth to discover that his brain is malformed, no one would have any concern with his development right now.  He is doing A LOT of the things you would expect from a kid his age.  But we found out last week that he's not doing everything you would expect.  In reality, at 6 1/2 months, he's behaving about at the level of a four to five month old.

Last Monday, Dylan was evaluated at Dornbecher Children's Hospital.  He was seen by a Developmental Pediatrician and a Physical Therapist.  Both specialize in kids with neurological disorders, and both came to the same conclusion independently that developmentally Dylan is at a four to five month level.  These were the same specialists that evaluated Dylan about 3 months ago and, after seeing his MRI, were surprised to see him functioning as "normally" as he was.  The post I wrote after that last appointment was so much fun.  I came straight home that night and started typing out the story from the visit, celebrating the news that our little guy was doing so well!  I received so many notes of encouragement after posting that, friends and complete strangers that had been following Dylan's story were rejoicing with us in his accomplishments.  And the truth is, Dylan has progressed a ton since that last evaluation.  He is rolling, eating solid foods, interacting with toys.  In the far back corner of my mind there may have been a tiny little voice whispering that maybe he should be doing more by 6 months, but I was so focused on what he IS doing that I never took the time to think about what he SHOULD be doing.

So when I was told last Monday that he's 2 months behind where he should be, I'll be honest....I was sad. Sad that the reality of what we were told when Dylan was first diagnosed as having Microcephaly was finally starting to materialize.  Sad that I may have to face the truth sooner rather than later that my kid is different, and will start to be more and more different as time passes.  Sad that things are already starting to be harder for him than for other kids his age...things like sitting up on his own, rolling over (he still only goes over his left shoulder), and crawling.  We had a very honest conversation with the Physical Therapist at Dornbecher, and his best guess after his evaluation was that Dylan would be walking around his second birthday.  I know that Dylan is going to continue to do things on his own schedule and nothing a physical therapist says after an hour-long evaluation is going to stop him from walking when he's 14 months old.  But I also know that it's time to prepare myself for the reality that my little guy will struggle to overcome the challenges of his high muscle tone, and may continue to fall further away from the development curve as time passes.

One day in the future I will be used to it.  I will have a really comfortable and honest answer to give people when they ask me about Dylan.  Strangers in the grocery store, gawking at the cute little boy, who ask how old he is and innocently follow up with "oh, when did he start crawling?" or "is he walking yet?"  But I think the adjustment period will be hard on me.  As a mom, it is so fun to brag about your kids and their accomplishments.  I'm not going to lie...when Dylan rolled over for the first time at 4 1/2 months, I was on the computer that night blogging about it!  As dumb as it is, our competitive-mom nature comes out when we are talking about our kids.  Now is the time for me to throw out the window any tiny desire to compare Dylan with other kids.  He is who he is and he will do what he does when he does it (That's a mouthful!).  And, forgive me if you will, but I am going to fully utilize my right to BRAG when this kid does accomplish new and exciting things!  Because I need to celebrate!  And I need to keep reminding myself of the simple fact that, based on the results of his MRI, EVERYTHING Dylan does is a miracle worth celebrating!

So, yeah, I said it out loud.  I wrote it down for the world to see (or the tiny population of people that follows along!).  And, you know, it really wasn't that bad.  There will always be a sadness in the back of my mind, as I mourn the "normal" childhood or life that Dylan may or may not get to live, but I'm still so excited to see how this kid is going to change the world!  And, thank God, he doesn't understand when some specialist says he's falling behind.  He's just working extra hard each and every day to sit unassisted, to pick up that cool toy in front of him, to roll towards the mirror on his right instead of always to the left.  He'll get there.  Just wait for it.  He's going to amaze us all!

I am in awe of you

Hey Moms....those of you who have kids that are older than 2 1/2...who have made it through this stage I'm in with a toddler and a newborn...those of you who have kids in grade school or high school or kids that have kids of their own...

I am in awe of you.

Because, from my vantage point, living through the daily grind of raising a toddler and a baby, I'm not entirely sure how ANYONE makes it out the other end.

My kids are amazing.  Both are wonderful sleepers, great eaters, well adjusted, and loving.  They're not violent, they don't scream and hit, and they don't cry uncontrollably for no reason.  I'm pretty sure that, compared to the average kids, they're both pretty dang easy.

But I'm also pretty sure that taking care a 2 1/2 year old and a 6 month old is just never gonna be easy.

If you've seen me the past few months, you may have noticed my hair sticking out every which way or pulled back into a greasy ponytail.  If you've stopped by my house, I'm sure you've seen dishes left in the sink from the night before, or bins of clean, unfolded laundry in the corner of each room.  It's November 20th and I still have Halloween decorations on my mantle (which, by the way, I finally got around to setting out on October 30th).  In the past couple weeks, I've walked out to my car without my shoes on, without my car keys (many times), and without one or the other of the kids.  In short, I'm a mess.

I just don't think there are enough brain cells in my brain or hours in my day to keep up with everything that is required of me right now.  My life can be summed up in one simple word:  chaos.

At 2 1/2, Jack doesn't understand boundaries.  He is pushing every limit imaginable.  If Dylan is playing with a toy, he wants it.  And, not in a "may I please have a turn with that, sweet brother," kind of a way.  No, it's more like "I'm going to rip that out of your hands to prove I'm stronger and more powerful than you."  If he wants milk, he wants me to drop everything I'm doing and get him milk NOW, and he will yell at the top of his lungs at me until I do just that.  He loves interacting with Dylan.  It always starts out innocently enough, with Jack being sweet and gentle and lovingly playing with his brother. I watch for a moment with a smile on my face, soaking in the tender moment between my two sons.  But just when I let my guard down and turn my head, Jack's sweet hug turns into a headlock, resulting in Dylan screaming, me yelling and lunging at Jack from across the room (where I was attempting for the 6th time that day to fold the bin of laundry that I washed a week ago), Jack yelling back at me, Cooper barking like crazy, and Jack sitting in the corner in time out for the count of ten.  And, guess what, laundry's still on the floor.

Poor Dylan never gets a moment of peace with Jack around.  I'm struggling to even find someplace I can set him down where he is safe from big brother's reach.  Just last week, Jack pulled the highchair over on top of himself, with Dylan in it.  Jack got a pretty good-sized goose egg on his head (which, frankly, I think he deserved), and Dylan was left traumatized but uninjured.

My life is frustrating right now.  Its frustrating to never have both hands free at the same time (washing dishes is much slower with a baby on your hip).  To feel like I don't have 15 uninterrupted minutes to accomplish a simple task over the course of a day.  To look around at the chaos that has overtaken my home, the wrinkled shirt I send my husband to work in, and the uninspired, ready-in-15-minutes-or-less dinners that I'm serving and accept that this is our new normal.  But, right now, I don't really see an alternative.

And then I think about you:  Moms who have made it through this battlefield and lived to tell about it.  You are my heros and my inspiration!  You are my hope that there is a light at the end of this two-kids-under-two-and-a-half tunnel!  My mom raised three of us little terrors, and today she always has a clean house and folded laundry!

There will be a day when Dylan will be able to fight back and Jack will learn ways to get attention that don't include yelling at the top of his lungs or terrorizing his baby brother.  There will be a day when I have the time and energy to cook meals that I am proud to serve my family.  And one day I might even coordinate the decorations I have on display with the appropriate holidays!

And now the cliche:  They grow up SO fast.  And, cliche or not, it's so very true.  There isn't a tiny bit of me that would be willing to trade this period of chaos for a clean house.  Because just about the time when Jack is mature enough to understand that getting a glass of milk doesn't require him to yell repetitively at the top of his lungs, he will also be too mature to cuddle up on my lap because he stubbed his toe or laugh hysterically because I made a funny face.  And I can see it in your eyes, all you moms who have been here before.  When you tell me "it goes by so fast," I know that there is a piece of you that would give anything to jump back in time and spend one more day surrounded by the chaos and mess and overwhelmingly unconditional love that comes from a toddler and a newborn.  

So, Moms, whether you're in the midst of raising a toddler or have kids older than me, I think we should all take the time to recognize ourselves for what we accomplish on a daily basis, even if that load of laundry from last week is still sitting wrinkled in the corner or your family is eating quesadillas for the third time this week.  Because, moms, I am in awe of you!  And as I sink exhausted into my pillow each night, I am in awe of myself that I made it through another day.   If this chaos is a part of the life I get to live, with these the two amazing kids and wonderful husband, then I'll take it.  

Ready....Set....

...ROLL!!!

That's right! This week, at just over 4 1/2 months old, little Dylan started rolling from his back to his front!  Right on schedule.  Because, despite all of the doctors' warnings that Dylan will be delayed in reaching his infant milestones, he is determined to keep up with all of the other kids his age. Or beat them to the milestones, as the case may be!

As a comparison, his big brother, Jack, didn't start rolling over until he was about 6 1/2 months old (not that it's a competition, right?)

I've said it before, but because of what we know about Dylan, it is SO encouraging to see him succeeding.  Every new parent is excited when their kid smiles for the first time, starts cooing, laughs at them, or rolls over.  One of the biggest joys of being a parent is watching your children learn and grow, and taking enormous amounts of pride in their tiniest accomplishments.

With Dylan, I feel like that joy and pride is magnified one hundred fold!

I still am amazed every time he latches on and nurses so fervently, because most kids with neurological disorders can't figure out how to accomplish that simple task.  I melt every time he looks right into my eyes and lights up with a smile, because I am given reassurance that he is able to interact socially.  And I am now overflowing with pride each time I see him successfully roll over, because I had no expectation of when he would start developing his gross motor skills.

We have been working with two different physical therapists for the past couple months to address Dylan's Hypertonia (high muscle tone), or stiff and rigid muscles.  One of the habits he has picked up is arching his back really hard.  In order for a baby to roll, he has to be able to pull his legs to his chest and tuck his chin.  Well, Dylan would consistently do the exact opposite, with an arched back and legs locked straight.  For the past week, we have really been working on showing Dylan how to tuck his head and pull his legs up.  Every time he arched, I would correct his position.  Two days ago, something clicked and he was able to make the connection all by himself, and over he went!  Each time I set him down, he initially arches his back in frustration.  Then he will pause - you can almost see the little gears turning in his head - slowly bring his knees up, and over he goes!  I love to see this problem solving from him, and I love to see him begin to control his body in new ways.

Thanks for celebrating this little accomplishment with us!  I know Dylan has a lot of friends and supporters, and it is so much fun to be able to brag about his exciting new tricks with you :).

Have a great weekend!

Genetics Update

What a week!  Between Dylan and myself, I had a total of FIVE doctors appointments in four days, including the surgery yesterday to remove the Melanoma tumor from my leg.  It went well, and surprisingly it does not hurt very bad...yet.  I was awake during the surgery, with just local numbing where the doc was cutting.  I didn't watch (GROSS!), but when she was all done stitching me up, I sat up to take a look.  I was amazed to see a THREE INCH cut across the side of my knee!  It was so much bigger than I was expecting.  When I reacted to how huge it was, the nurse asked if I wanted to see what they removed.  I was curious, so she grabbed the specimen jar and, seriously, the chunk they removed was the size of a ping pong ball!  They weren't going to mess around with accidentally leaving any cancerous tissue behind, and I'm A-OKAY with that.  They sent it off to a lab to confirm that they got it all.  I should hear back early next week, but the doc was pretty confident.  She did re-remind me of how lucky I was to have caught it when I did...the repercussions of missing a malignant melanoma tumor are pretty devastating.

Today's appointment was with Dr. Anadiotis, the geneticist that we first saw back on June 19th.  It was at that appointment, almost four months ago, that we were first told that Dylan had Microcephaly.  Just walking across the sky bridge and into Randall Children's Hospital, where his office is located, brought back a whole host of emotions.  That was one of the hardest hours I've ever had to sit through, and I will never forget how heartbroken I felt as he told us that our baby Dylan would have intellectual disabilities.

When we first met with Dr. Anadiotis, we were still under the impression that Dylan's brain "architecture" was formed properly, which led us to believe he fit into a specific diagnostic category (Primary Autosomal Recessive Microcephaly).  We started the process of genetic testing through the University of Chicago, looking specifically at the genes that could cause this Autosomal Recessive form of Microcephaly.  But on August 7th, when we met with a Pediatric Neurologist and found out that Dylan's brain was actually malformed, that diagnosis was no longer applicable.  We weren't at all surprised when that first round of genetic tests came back negative.  He still has Microcephaly (which basically means a really small head), but we don't yet know what caused it or what it will mean for his future.  We had hoped that Dr. A. could help us determine other things we could test for, looking specifically at disorders that follow the pattern that we are seeing in Dylan.

It was a bit disappointing when he, like so many specialists before him, shrugged his shoulders and told us he had no idea what could have caused Dylan's head and brain to grow the way they did, or what we can expect in the way of future development.

So, our next step is to see the infamous Dr. Dobyns at Seattle Children's Hospital.  Dr. Dobyns is both a medical geneticist and a pediatric neurologist, and he's the WORLD expert on Microcephaly.  I have seen his name come up so many times in the reading I have done on Microcephaly.  Throughout his career he has worked all over the country, so we are very lucky that for the past couple years he has been at Seattle Children's, just a few hours north of us.  We sent all of Dylan's medical records along with his MRI up to Seattle Children's Hospital about a month ago, in hopes that we could get in to see him.  He is booked through the end of the year and they have not yet released his 2014 calendar.  Everything that I have heard about this guy is that he is VERY hard to get into, but I am persistently calling up there at least once a week to make sure that we are able to get something scheduled as soon as his calendar opens up.

One thing that has struck me through this process is how my view of a "specialist" has changed.  Five months ago, I couldn't have imagined EVER stepping foot into the office of a pediatric neurologist, geneticist, or even physical therapist.  Now, these highly trained professionals are not specialized enough for us!  Its hard for me to believe that I have a child with a condition SO RARE that we are seeking the help of the WORLD expert!  The geneticist today told us that he thought Dr. Dobyns would be willing to see Dylan, because his case would be "different than most of the cases that he sees, and therefore interesting to him."  So our little sweet Dylan, who seems to me to be a totally normal 4 1/2 month old, has something going on with his development that is rare enough that the world expert in a super rare disorder would be intrigued by him.  That's just hard to wrap my brain around.

Sometimes this whole "quest to find the cause" seems a bit futile, and I ask myself if it's worth all the effort we are putting in.  I really do believe, at this point in our journey, that it IS worth it.  There are so many reasons, both for Dylan's sake and for the sake of our family, that I want to know....but that's a WHOLE different blog post!

Thanks for your prayers yesterday as I had my surgery, and as I recover (hopefully without being kicked in the knee by a rambunctious toddler anytime soon!).  And thanks for being on this journey with us.  I will never be able to express how meaningful each and every comment, email, and heartfelt message is to me.  Just knowing that I have you all as a support system, to cry with us, pray with us, and celebrate with us, makes this crazy life I'm living feel a bit more manageable.

Prayers...please...

Over the past few months, since I began to tell our story, I have experienced an overwhelming amount of love and support.  You guys who have followed along know that the past few months have been really hard on my family.  We have been dealing with some pretty heavy things and trying really hard to stay positive, lean on each other, and accept that somehow this is all part of God's greater plan for our lives.

Many times I've said, "It can only get better from here."  I wish that were true.  

On Thursday I received some news that knocked the wind out of me yet again.  Since I have opened up my life through this blog, it only seemed fair that I share the latest with you too, so that you can join with us one more time in prayer.  

A week ago I had a weird looking dark spot on my knee biopsied.  It turns out it was Malignant Melanoma. 

I am 33 years old.  I have two tiny children that my world revolves around.  There is NOTHING more terrifying to me than the idea that something could prevent me from being 100% present in their lives.  So you can imagine how finding out that I have skin cancer might have hit me like a truck. 

The good news is, we found it early.  It is still stage 1, which means that it was localized to this one spot on my knee and hasn't spread to other areas of my body.  Thank God for that.  On Wednesday I am going in for a procedure to remove a margin of tissue in the surrounding area just to confirm that it is all clear.  I will also be going to the dermatologist every three months for the next few years to have a complete scan and make sure I don't have any new or suspicious spots pop up.  

No chemo.  No radiation.  Hopefully 1-2 hours in the surgical office and I will be cancer free.  

It is easy for me to say "it was only one small spot," and "we found it early...no big deal."  That's more my style, to just push this out of my mind and act like it's not bothering me.  But the truth is, hearing that you have cancer, any type of cancer, no matter how small or insignificant, is pretty scary.  I will always wonder if and when it will come back.  I will always know that cancer has lived in my body, and therefore I am at a higher risk for additional Melanoma showing up in the future.  As hard as I try to focus on the fact that this was just one small spot, the worst case scenario keeps finding its way into my thoughts.  And then there are the What Ifs? that keep swirling around in my head.  What if I hadn't gone to get it looked at when I did? What if it actually has spread into my lymph nodes or other parts of my body?  What if something slips past the doc during the procedure on Wednesday and he doesn't remove all of the cancer cells?  The potential is.....well, I'm not prepared to think about the potential.

Life is full of hills and valleys.  My dad was famous for reminding my sisters and me of this throughout our childhood.  Whenever we would come on a hard time, or feel like we were stuck in a dark valley, he would lovingly encourage us to wait it out.  Before much longer we would be up on the top of a hill, likely with a beautiful view of where we had come from.  I've gotta admit, this valley I'm stuck in seems deep and scary and really hard to navigate right now.  But sometime soon I will find my way to the top of the mountain.  The journey will be hard, I know that I have a long climb ahead of me, but when I make it to the top I will be able to look back and see all of the lessons that I was meant to learn along the way.  

I find myself wanting to get so angry sometimes....WHY ME, GOD?  What did I do to deserve all of this right now?  What reason could there possibly be for putting my family through so much chaos in such a short period?  Isn't there a much easier, less painful way to teach us these all-important lessons?  But every time I let myself go there, the answer that pops into my head is "why not me?"  What guarantee did I ever have of a perfect life?  A true test of character is how a person reacts in the midst of adversity, and I hope to pass this test by the grace of God.  I said before, God has never promised to give us a perfect and easy life, but he has promised to walk with us through the life he gives us.  And this is the life I was given, complete with many, many hills and valleys. 

So please pray with us.  Pray that the surgery on Wednesday is routine and successful, that all of the cancer cells are easily removed.  Pray that this is the last time my family has to worry about the ugly "C" word.  And pray that my recovery is easy and painless (and that an overly rambunctious 2-year old doesn't jump up on my lap when I'm not looking!)

I'll leave you with a couple pictures of our angels...because just looking at these two handsome men is enough to make any bad day feel so much better!

Awareness

Today, September 30th, is National Microcephaly Awareness Day.

One year ago today, September 30th 2012, I was completely unaware that Microcephaly even existed.  I was unaware of the thousands of families that are affected by Microcephaly.  I was unaware of the many children living with Microcephaly and the challenges that they face every day.

One year ago today, September 30th 2012, I found out I was pregnant.

What a difference a year makes!

The past twelve months have been...challenging, amazing, emotional, dramatic, influential, challenging (did I already say that?), heartbreaking, wonderful...and memorable.  I don't believe we have ever had a 12-month period in which SO MUCH has changed.  We found out we were pregnant with our second kiddo, bought a house, celebrated Jack's 2nd birthday, sold a house, moved (when I was 7 1/2 months pregnant!), welcomed Dylan into our family...and after all that, experienced a VERY stressful four months!  I would never change a thing about my life and I am beyond thankful for everything I have been blessed with, but it has been challenging, to say the least!

So today, Microcephaly Awareness Day, really got me thinking about everything that has happened in the past 365 days, since those two little pink lines showed up on the pregnancy test that changed my life forever.

At the risk of sounding selfish and insensitive, I never wanted to be as "aware" of a disorder such as Microcephaly as I am today.  I never dreamed that I would have the need to learn this much about something as uncommon as Microcephaly.  I never imagined that one of those "it will never happen to me" scenarios would play out in my family like it has.

But in our present situation, we can only make the best of of our blessings and challenges.  And, as hard and emotional as it has been, we have no choice but to be very, dramatically, emotionally, and 100% AWARE of Microcephaly.  And, friends, if you are following along with our journey, you too have become aware of something that, most likely, you never knew existed before you met Dylan.

So, if nothing else, today you know that Microcephaly exists.  The word "Microcephaly" simply means "Small Head."  In many cases, the cause of the small head size is unexplained.  It can be genetic, due to an injury or virus during pregnancy, primary (present at birth), secondary, or associated with a more complex syndrome.  It typically is associated with developmental delays, but the severity of the delays is all over the board.  The cause for Dylan's Microcephaly is still unknown.

I am so new to this world, and while I would love to spend each and every September 30th from this day forward raising awareness for Microcephaly, I admit that this year I mostly just sat back and observed.  I dressed Dylan in yellow (the color symbolic to Microcephaly Awareness), posted his picture on the Foundation For Children with Microcephaly Facebook page, and went on with my day as if it were any other day.  But the truth is, my life has been changed by a diagnosis and today it is my responsibility to make my circle of influence more aware of what Microcephaly is.

So join my family in being aware of Microcephaly today, if nothing else.  One day down the road, maybe we will be more involved in research, fundraising, or awareness campaigns, but today please just be aware with us.  Remember Dylan and all of the other sweet angels with huge hearts and tiny heads in your prayers tonight.  And mark your calendar for Microcephaly Awareness Day next year, September 30th 2014...I can't wait to see what exciting and challenging changes the next 365 days brings to my life!

Dylan all dressed in Yellow for Microcephaly Awareness Day, 2013!

I will be okay.

Lately I've been thinking a lot about our future. I soon will be a card-carrying member of "The Society of Parents with Special Needs Children."  (*no...that's not really a thing...at least not that I’m aware of...).  I have no idea how to exist within this Society, and I am paralyzed by the fear of saying or doing the wrong thing out of ignorance.  I don't know how long I can politely and curiously watch a special needs child in public before I am being rude or insensitive, and I sure don't know the terminology that is considered "politically correct" these days.  I want so desperately to communicate with this new group of people that I’m suddenly linked to.  I find myself drawn to children with special needs whenever I see them.  I want to throw my arms around them, to see their precious smiles and the way their faces light up at the simple things in life.  But most of all I want to talk to their parents and hear their stories.  To know the struggles and triumphs they have had on their journey.  I want to know what their child's diagnosis is, and how different their current life is from the one their doctors told them about in the beginning. I want to learn the secret handshake in order to fit gracefully and seamlessly into their world.

But, in all honesty, I am terrified of stepping through the door and introducing myself. 

Over the past three months, I have stood on the edges so many times and tried to talk myself into starting up a conversation with a parent of a special needs child.  At the grocery store, at the zoo, at the pool, I feel like I keep coming upon opportunities to say something...and each time I silently walk away, disappointed in myself.  

Which is why, yesterday when I saw a little girl with obvious developmental delays and a very small head, I knew I had to step out of my comfort zone and speak up. 

I was standing in the membership line at OMSI when this sweet girl, who looked to be about 4 years old, came running up with a huge smile on her face.  She was immediately drawn to Dylan, who was sound asleep in my front pack, and although she didn't appear to be verbal she was pointing at him excitedly.  Next she saw Jack and ran up to give him a hug, and the woman chaperoning her kindly reminded her that she needs to keep her hands to herself.  She was so sweet, and I spent the next couple minutes saying hello and letting her peek at sleeping Dylan. 

I wanted to approach the woman with her, and to ask if maybe this little girl had microcephaly too, but I was so nervous.  The kind of heart-racing-and-butterflies nervous I remember feeling when I talked to a cute boy in high school, knowing that if I didn't come up with an opening line quickly this opportunity would pass me by.    

Finally I got up the nerve.  “Excuse me…” I said timidly to the woman with the little girl, “…but, by chance, does your daughter have Microcephaly?”

“No…..?”

Oh crap, I shouldn't have asked.  I had offended her.  I felt the blood rush to my cheeks and turned quickly to leave, muttering a quick “I’m sorry” as I tried to melt into the crowd. 

And then I heard another woman, from a few feet away.  “Excuse me...what were you asking?”  Her tone was very different from the first woman’s.  She was kind, gentle.  Looking at her, I could see the resemblance and I knew right away that this was the little girl’s mom. 

“It’s just…I was wondering what…if maybe she…it kind of looked like…” I hopelessly stumbled over my words, unable to make sense.

With a smile on her face and kindness in her eyes, she told me what her daughter’s diagnosis was, something I had never heard of. 

I pointed to Dylan.  “He was born with Microcephaly,” I said.  Out loud.  For the first time to a stranger.  My eyes filled up with tears as I quickly thanked her for her time and turned to leave. 

And then she said four words to me that I have desperately needed to hear for the past three months.  Words that meant so much coming from her, someone who has been through it and is living smack-dab in the middle of this world that I’m about to enter into.  She was just a mom, but in that moment she might as well have been the President of the “Parents of Special Needs Kids Club” for all I knew. 

“You will be okay.”

I have no idea if she realized how important those words would be to me.  She said them so confidently, with a smile on her face and a twinkle in her eye, as if she knew the amazing gift that was waiting for me on the other end.  Maybe she was thinking back to a time when her daughter was three months old.  When she was terrified of what was ahead. And when someone told her that she would be okay.  Or maybe she just knew, with a confidence that can only come from experience, that we would be okay.

I cherish those words from a stranger’s mouth.  I hope that I can continue to have a dialogue with parents of special needs children in my community.  That, through time, as I learn this secret handshake that I never dreamed I would have a need for, my encounters will be less awkward and emotional for me. And I look forward to a day in the future when I can calm the nerves of a nervous new mom by giving her the gift of reassurance that I was given yesterday. 

Because, I know it is true.  I will be okay.  

dreams

It’s a really weird thing, accepting the news that your kid is going to grow up with special needs.  I've been told many times that I’m adjusting well, handling the news so gracefully.  Maybe it's true. I don't mope around the house all day long, depressed and forlorn.  I'm not crying myself to sleep each night. I am loving every second of my new life as a mom of two boys, and watching their relationship grow.  For the most part, my life and my attitude are the same today as they were before I found out my son was born with microcephaly and a malformed brain.  

But honestly, I think the reason why it appears I'm handling the news so well is that I haven't actually accepted that its true.  When I look at Dylan, it's impossible for me to see a single thing "wrong" with him.  Yesterday he hit the three month mark, and he is doing exactly what I would expect a three month old to do.  The smiles and the "conversations" we have just melt my heart!

And yet, there are doctors and neurologists's telling us that Dylan will have all these problems.  We are in a different specialist's office just about every week, trying to find answers and determine what we can do to best help our little man out.  Each time I walk into another exam room, or talk with a new specialist, I get a huge lump in my throat as I wait for a piece of news that has the potential to tear my heart open again.  I remember when Jack was a baby, it felt like we were at his pediatrician's office so often.  Now, what I would give to only have the typical well-baby visits for Dylan, instead of specialist after specialist after specialist.  

And there is a huge part of me...the part of me that can't possibly accept the truth...that is just waiting for this whole nightmare to all be over so that I can get on with raising my kid like every other typical kid.

Moms...remember when you were pregnant and you had those crazy, hormone-induced pregnancy dreams?  Mine always had something to do with forgetting my baby as I went on with my life, or loosing him in a crowd of people.  I could hear his cry, but could never quite find him.  I would wake up sweating and shaking, terrified that one of these dreams could actually become a reality, and quickly place both hands on my swollen belly to assure myself that my baby was still safe within me.  

And then there is the nightmare of having a baby with a serious problem at birth.  Something that will affect the rest of his life, and make it that much harder for him to have a typical, happy and healthy childhood.

Right now I'm living in that nightmare, and waiting to wake up.  

As we go from doctor to doctor, I can't help but feel like we are searching for a "cure" for Dylan.  Like we're looking for the right doctor to tell us the right formula and solve this "problem" for us.  And then I can wake up.  But Dylan doesn't have a disease that can be cured.  He will never NOT have microcephaly, and from what the neurologist has told us, his brain will never have the proper structure.  We have no idea what this will mean for him or for us as a family long term, but it is something that we will eventually come to grips with.  

So, yes, I guess I'm adjusting well...as well as anyone could.  I love this little kid so much that it feels like my heart will burst.  Because of what I know about him, I am rejoicing in each and every tiny thing he does, things that I might have otherwise taken for granted.  Each time he smiles at me, I feel my eyes well up with tears of joy.  But there are hard days.  Really hard days.  Days when the nightmare feels so overwhelming that I don't feel like getting out of bed.  Days when I let myself start thinking about the future and what it could look like.  It's a lot to think about, and it makes my heart hurt so bad that I just have to stop.

And then Dylan smiles at me, and Jack throws his arms around my neck and tells me he loves me, and I realize that it's worth it.  No matter what happens, or how hard this journey is, these two boys will carry me through.  A smile from either one of them is enough to make any hard day a whole lot easier.  And it's enough to remind me that this life I am living, wide awake, with the two of them snuggled up on my lap, is my every dream come true.

Surprised

Since we first found out that Dylan has Microcephaly, I have been saying that I am prepared to be surprised by this kid.  Well, he apparently got the memo, and is already in the business of surprising the docs!

We had a series of appointments yesterday at Dornbecher Children's Hospital, in the Child Development & Rehabilitation Center (CDRC).  We met with two Developmental Pediatricians and three Physical Therapists, all who specialize in children with developmental disabilities.  Together the appointments lasted for over two hours.  Some of the time was spent talking through the details of my pregnancy, our observations of Dylan at home, and a history of the specialists we have seen to date.  But the majority of the appointment consisted of these five specialists evaluating Dylan through a series of neurological exams.  They tested every reflex in the book by poking, pulling, and prodding him.  Dylan was a good sport for a while, but he got a bit overwhelmed after being passed from doctor to doctor to doctor.  He definitely lost patience towards the end!  The worst was a test of his startle reflex and head control, where Dylan was held up in the air, flat on his back in the doctor's palm, and basically dropped 12-15 inches.  They did this multiple times, and each time Dylan let them know he was NOT a fan of the test...although he did pass with flying colors!

After the extensive evaluations, the doctors asked Brian, Dylan and I to leave the room.  We were brought back in a few minutes later so that they could reveal their opinions on Dylan's development so far.

"Well...we really couldn't find much of anything to be concerned with at this point...We are all very surprised by how well Dylan is developing!"

Dylan being evaluated by all five docs at once.
You can barely see his little toes right in the middle of the action.

You see, before they did their evaluations, these doctors had all read the report from the Pediatric Neurologist we saw a few weeks ago.  They looked at Dylan's MRI, and saw how malformed his brain is.  They also knew the degree of Microcephaly he was born with.  They had all seen just how far below the growth charts Dylan's head measurements have been.  Based on what they knew in advance, they were expecting a far different three month old baby than the one we brought into their exam room yesterday morning!

It was so encouraging to hear that Dylan left five highly trained specialists SURPRISED!  I guarantee it won't be the last times you hear that word associated with our little man!

They did mentioned that Dylan holds his muscles very tight, especially on his left side.  This Friday we will be starting Physical Therapy with him to try to loosen him up.  I'm excited to learn from the therapist ways that I can work with Dylan on a daily basis - my goal is to not let him get to the point where he is falling behind!  Other than that, the only issue that was discussed as a possible concern was the amount that Dylan sleeps throughout the day.  He still sleeps a lot, which could be an indication that his brain is having trouble figuring out the sleep/wake cycle.  But I know quite a few babies with perfectly formed brains that struggle with that concept, so as of right now we're not too worried!

All signs are telling us that, at some point in the future, we will go to one of these evaluations and be told that Dylan is falling behind...missing milestones...developmentally delayed.  I am prepared for that day, as much as any mom can be prepared to hear this type of news about the child that, in her eyes, is perfect in every way.  But when that day eventually comes, I will continue to celebrate every tiny achievement that Dylan makes.  I will work harder than ever with him to overcome his challenges, and to give him the tools he needs to succeed.  I will raise him to believe that he is fully capable of anything he puts his mind to.  I will advocate for him as we pass through the offices of one specialist after another.  I will be fully committed to searching for an accurate diagnosis in order to better understand what he will face in the future.

And I will NEVER stop being SURPRISED by him!