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!

Updates

I've had quite a few people ask me for updates on all the drama in our lives after I posted a couple weeks ago.  I'm new to blogging, but it is absolutely amazing to me that people are actually taking time out of their day to read about my family, and these people truly care about what is going on in our lives!  So, to all my fans (tongue in cheek!!!), I apologize for not keeping you updated on some of the plot lines that you were following.  Here are a couple updates for ya'all.
 
Dad's 24-hour stay at the hospital a week and a half ago was more inconvenient for him than anything.  His ticker is still tick-tocking, and while the cardiologist intends to do some further monitoring in the near future, he has so far found nothing of major concern.  The arrhythmia pretty much cleared up on it's own, and he's back to his normal, tennis and golf-playing self.  

Brian's job situation is still in limbo.  He's had a few somewhat promising prospects, but nothing concrete yet.  Keep praying with us that he will find something that both pays the bills and keeps him happy and satisfied!

The broken water heater was replaced by the home warranty policy that was provided by the sellers of our house.  So, as of last week we have a brand new water heater! (Which, to me, is somewhat anticlimactic.  It's too bad that the home warranty won't buy us a new couch or a bedroom set.)  We kicked in a few extra bucks to get something more efficient than was covered by the policy, but other than that it was installed at no cost to us.  Unfortunately, when we got home from our beach trip on Sunday night, we found a leaking pipe!  I was filling up the bathtub for the boys and Brian ran downstairs to grab something from his office (directly beneath the bathroom).  He heard a strange sound in the ceiling and reached up...and his finger went right through the soggy sheet rock!  We aren't sure if the leak was caused by the installation of the new water heater (which would be pretty unlikely), or if it was a pre-existing problem that we just hadn't noticed before, but either way it will also be covered by the home warranty.  Thank God we found it before it caused too much damage!

Our foundation issues haven't resolved themselves yet...the earth is still slowly eating our house.  It will probably be a while before we have a resolution to this one, but it does not look like it will be covered by a warranty.  We keep spotting new cracks appearing on throughout the house, on the freshly painted walls.  What a mess!

We had a wonderful ending to our beach trip last week.  Brian was able to play lots of golf and a bit of tennis.  I spent hours talking about life, love, and the joys of raising kids with my cousin, who is also my lifelong best friend.  Dylan went to his first movie in the theater (We are the Millers...Hilarious! He slept the whole time), and Jack did some pretty sophisticated sand excavation with his shovel and bucket on the beach.  We had dreary, gray weather for part of the trip (which is expected at the Oregon Coast!), and a cranky 2 1/2 year old who decided napping at the beach was over-rated, but overall it was a great week with family and a wonderful get-away for all of us!

I think that pretty much covers the "non-Dylan diagnosis" issues in our lives!  So, to those of you who are reading this, or have read any of my previous posts...THANK YOU!  Just the fact that you would take the time out of your day to think about my little family and what we are going through means the world to me.  Hopefully I will be diligent in keeping things updated, but please feel free to ask if I leave you with questions!  I absolutely love the notes and emails I have been receiving, and I can't tell you how encouraging it has been to us through this process.  It is an honor to me that you are interested in reading about my life, and I hope throughout the years that I will have a story worth telling.

check one off the list!

Finally this week we got GOOD news from a doctor appointment!  After a couple real bummer appointments (first with the geneticist, where Dylan was diagnosed with a genetic disorder, and then with the neurologist, when we found out his brain is malformed), we were pretty anxious on Monday morning as we waited to see the Pediatric Craniofacial Specialist at Dornbecher Children's Hospital.  We were referred to Dr. Emily Rose Gallagher because of the concern that Dylan may have Craniosynostosis, or the premature fusing of the plates in his head.  If this had been the case, the only correction is surgery.  I can't imagine the stress and anxiety of sending my baby into skull surgery, not to mention the inconvenience of recovering with months of wearing a helmet!

After a thorough exam, Dr. Gallagher assured us that Dylan does NOT have Craniosynostosis.  Sigh of relief! She was very thorough and explained to us exactly why we should be confident in her opinion, which we really appreciated.  As you can imagine, after receiving the incorrect information earlier about Dylan's brain structure, I'm pretty weary of just accepting what a doctor tells me without asking a lot of questions!

I really liked Dr. Gallagher.  She was patient and spent time explaining in great detail what she saw and exactly what we would have seen if Dylan did indeed have Craniosynostosis.  She was sympathetic to our situation and took the time to gather all of the necessary information and listen to what we have been through up to this point before rushing into her exam.  In fact, as we were driving home from the appointment I actually told Brian I was disappointed that she wasn't someone we would have the need to see again (although I was very relieved at the same time).

However, there was one moment in the appointment that I just can't get out of my mind.  We were talking about kids with Microcephaly, and she was telling us about some other cases she had seen.  Granted, Dr. Gallagher is young, and therefore relatively new in her career (maybe late 30's/early 40's?).  But she specializes in Craniofacial medicine, so if anyone has seen kids with Microcephaly, she has.  She was trying to encourage us by telling us a story of a kid she saw years ago while she was in Residency at the University of Washington, where they have a huge Craniofacial Specialty Clinic.  Well, the amazing thing about this kid was that he had pretty severe Microcephaly (small head), and although he was late into grade school he wasn't showing any developmental delays.  The specialists were all trying to figure out the cause of his microcephaly, but he didn't fall into any of the normal diagnosis's and everyone was amazed by his development.  Dr. Gallagher told us this story as an encouragement that we could still hold out hope for normalcy for Dylan, but the point that keeps bouncing back into my head is the fact that normal is SO rare for a kid with microcephaly.  Our doctors don't expect Dylan to be like the other kids.  They can't tell us if he will ever learn to walk or talk or read, or be able to manipulate a fork or a pencil, or maybe if he will just struggle to grasp the complexity of concepts like algebra and calculus.  But the fact that his brain has missing pieces is a pretty strong indication that he will be faced with challenges.

But I'm going to leave all those worries for another day!  Right now, I'm happy that we got some good news!  And, as I've reported before, Dylan is turning into a pretty amazing little kid and our whole family is falling head-over-heals in love with him!

A week off

After the last week (really, after the past three months!), our family needed a break.  Thankfully, that's just what we get!  We had the opportunity to spend the week on the Oregon Coast with my extended family, in a tiny little beach town called Gearhart.  This trip has been planned for a while, but it turned out to be the perfect timing for a get away.  Three grandmas and 4 grandpas (my mom's siblings & their spouses) to entertain and take care of the boys, along with meals planned and prepared for us, a big cozy house and beautiful view of the ocean is EXACTLY what we needed!  We're only two days in to the trip, and we've already had a bonfire and made smores, seen a pod of whales, made multiple trips down to play in the sand, walked to the local bakery for fresh baked scones, watched two beautiful sunsets, and spent precious time laughing and talking with family.  It's been the perfect beach get away!

How wonderful that we can just relax as a family and pretend, at least for a week, that Dylan is just a normal infant.  And he honestly is!  I've said it before, but Dylan is showing no signs of delay at this point.  He's eating, sleeping, and pooping just like any other 2 1/2 month old (because that's really all they do, right!?)  Right now, he's laying in a swing next to me, in front of the big picture windows facing the Pacific Ocean, cooing and chewing on his fist, intently studying the brightly colored ball hanging from the toy bar above him.  He has been smiling and talking to all of my family members for the past few days, and it's been fun for everyone to get to know him better and to realize that, despite his diagnosis, he's just like the other "normal" babies they know!

The thing that I was MOST looking forward to on this trip was to have an entire week with no doctors appointments and no new news. In fact, as I was loading the final bags into the car, ready to take off for the beach on Monday morning, I got a call from the CranioFacial specialist offering us an appointment for Dylan on Wednesday.  I'm pretty anxious about the appointment (hopefully they will be able to shed some light on the fact that Dylan was born without a soft spot), and I had been told that they wouldn't be able to see us until October.  My initial reaction was that I would drive home from the beach to see them, but then I realized that would mean my week would no longer be appointment-free, and I declined the appointment (thankfully they had another opening next week).  I am just cherishing this week of normal!

Monday morning starts our week of doctors, appointments and hopefully new news on the bone structure of Dylan's head (pray that we have no need for surgery!!)  Until then, we will relax, enjoy time as a family, watch Jack explore the beach and grow up before our eyes, play board games, work puzzles, smile and coo with Dylan, and remember that, despite everything we have going on right now, we have an amazing life!

I'm fine...

My sister called today.  "Hey Amy, how are ya?" she asked...

"Oh, I'm fine..." I answered, "Except . . .

". . . Dad's in the hospital, my kid has a brain malformation, my husband just lost his job, our house is sinking into the ground, and our water heater needs to be replaced.  But, other than that, I'm fine . . . "

. . . . . . . . .

Yep.  All those things ARE happening in my life right now.

My 2 1/2 year old, Jack, is famous for answering any question you ask him with "I'm Fine" followed by a dismissive little shake of his chubby hand.  "Are you hungry?"  "I'm fine!"  "Do you need a new diaper?"  "I'm fine!"  "Are you too warm or too cold?"  "I'm fine!"  It drives me crazy that his answer to everything is "I'm fine," but then I think of who his mother is and I understand where it comes from.

I am a ridiculously positive person.  I love to see the glass half full....no, I actually love to see the glass 99.99% full.  I'd just rather spend my time talking about all of the wonderful things in my life than focusing on the negatives.  And I can honestly say there are SO many wonderful things, even now in the midst of all this chaos.

I have two amazing children!  Jack is such a blessing.  He is the happiest two year old I know, and watching him discover this world he lives in is the most fun I have ever had.  Dylan has been an incredible addition to our family, despite all of the struggles.  Already, I can't imagine our life before he was part of it.

I have a husband who supports our family and allows me to live out my dream of staying home with my kids!  Brian is amazing.  I knew that the day I met him 13 years ago, but I have grown to understand how amazing he is in the years I have spent with him.  The fact that he is willing to get up every day and drive to work, with the sole motivation of providing for the family that he loves, is something that I will never be able to thank him enough for.  And because he is so successful at what he does, I am able to stay home and raise his beautiful children.  This is a true gift, both for me and for our boys.

I live in a beautiful house, in a neighborhood that I absolutely love.  We moved into our new house about 4 months ago, when I was 7 1/2 months pregnant with Dylan. We searched for a house for over a year, and because we were picky and patient, we were able to find our dream house in our dream neighborhood.  This summer has been amazing, as we have explored the area and made frequent appearances at the local parks.  It absolutely feels like home.

I have an incredible support system.  Thanks to you.  There are so many amazing people in our lives, who love us and love Dylan.  Since I have made our story public with this Blog, I can't tell you how many emails and comments we have received.  And EVERY ONE of them has meant so much to me.  Thank you all for your loving words of encouragement.  We also have an amazing family, and we would be lost without them. You know who you are...thank you.

But...despite all the amazing blessings in our lives, life kinda SUCKS right now!  When my sister called tonight and asked "how are you?" and I laid it all out in one short sentence, it started to sink in to me how many things we have going on right now!

My dad DID get admitted to the hospital today, please pray for him!  He was having a heart arrhythmia, and since he has a history of heart problems, he took it seriously enough to go have it looked at.  Right now there are no new concerns and hopefully he will go home tomorrow, but the docs decided he should stay the night in order to monitor his heart and make sure he is ok.  Just visiting him today on the cardiac floor at St. V's was enough to bring back the emotional memories of his first heart attack and quadruple by-pass surgery 10 years ago. Yuck.

My son DOES have a malformed brain.  Still, just writing it out or saying it out loud makes me sick to my stomach.

My husband DID just lose his job.  Well, as of right now he still has a job, but he just found out that the program he works on got canceled.  This means that there will not be a job for him whenever they wrap up the final loose ends (the date has yet to be announced).  Talk about a load of stress on our family!  Four months after buying a new house and 2 months after having a baby is NOT a great time to loose a job, especially when you are the sole provider for your family.  Brian is so amazing at what he does and I have no doubt that he will land someplace soon, but the unknown is very difficult on all of us right now.

Our house IS sinking.  We just found out this little piece of information this morning.  Our beautiful house, that we just bought 4 months ago, has been showing some signs of settling and cracking.  Well, the specialist who came out today to look at the problem let us know that our house is slowly sinking into the ground...and the repair bill is between $27,000 and $41,000.  That's Twenty Seven THOUSAND dollars, for anyone who wasn't sure that they read it right.  That is a HUGE amount of money to even think about when your husband just lost his job and your son was just born with a malformed brain.

And, our water heater just died.  Yep, because we needed one more thing to deal with right now.

So, I guess it's true when they say "when it rains, it pours."  I'm not sure why our family is going through all of this at the same time, but we are.  And it is so easy for me to just answer "I'm fine" when someone asks me how I'm doing.  Really, I'm not all that "fine", but I know the blessings in my life are so much more potent than the crap that is being thrown at me.  We will be OK -  we will be "fine" - but life might be hard for us for a while.  God doesn't give us the promise of a perfect life, but He does give us the promise that He will walk with us through the life that He gives us.  So, for whatever reason, God gave my family THIS life and we will walk with Him by our side through it all.  I can't wait to look back on it years from now, once we have learned all of the lessons that we were meant to learn, and understand WHY we had to go through this.  For now, I hope we can focus on the many blessings we have and make the best of the rest.

So, in the words of my sweet, positive, two-and-a-half-year old angel..."I'M FINE!"

Misled

"I  know you have been told up to this point that Dylan's MRI was normal, but unfortunately you've been misled."

Ouch.

Today was our appointment with Dr. Lim, a Pediatric Neurologist at St. Vincent Hospital.  I was terrified of the appointment and what new information we might find out.  I kept trying to reassure myself that Dr. Lim could very well tell us that we shouldn't be worried about Dylan's future, and that all the drama over the past two months was just a big misunderstanding, but deep down in my gut I was scared to death that she would reveal something new.  Unfortunately on this one, my gut was right

She started the appointment by asking a few questions about my pregnancy and Dylan's birth.  She was specifically interested in whether or not he was born premature, and although I assured her that he was born full term, she asked a couple more times if I was sure we had all the dates correct.  After typing a few notes into her computer, she turned to Brian and me, paused with a deep sigh, and gave us the devastating revelation:

"I  know you have been told up to this point that Dylan's MRI was normal, but unfortunately you've been misled."

It felt like the room was spinning out of control as I tried to interpret what she was telling us.  Everything that we knew up to this point was based on the assumption that Dylan's MRI, taken fifteen hours after he was born, was normal.  We had been told that his "brain architecture", or structural elements, had all developed properly, and that the only concern was the size.  The normal MRI was used to diagnose Dylan with Primary Recessive Autosomal Microcephaly, which meant that he would have intellectual disabilities but no other developmental problems.  The normal MRI was what we kept clinging to as a glimmer of hope.

But we had been misled.

In reality, Dylan's brain never developed properly.  At birth, a "normal" newborn's brain is covered in ridges.  Dylan's brain, however, has far fewer ridges than should be expected.  Somehow, when the MRI was originally read, the doctor who wrote the report neglected to mention that this malformation was present. Dr. Lim said that when she first opened Dylan's MRI, she thought for sure that it was an image taken of a severely premature baby, because it appeared that development had stopped at a certain point early in the pregnancy.  But since all chart notes indicated that Dylan was full term, she had come to the conclusion that he has a malformed brain, likely caused by a genetic disorder.

So basically, with this new information, what we know now is far less than what we thought we knew yesterday.

Dr. Lim had no clues for us as to what we can expect developmentally from Dylan.  The basic indication is that likely there are pieces of his brain that are missing or never grew properly.  We won't know what areas he will struggle with until we get further into his development and actually SEE him struggling.  However, his potential for development problems are no longer limited to only the intellectual realm.  This new information could mean that Dylan has much different problems than we originally anticipated.  Not necessarily better or worse, but different.

Our next step is to schedule an appointment with a Pediatric Neurologist at OHSU, who is the expert in Portland on brain malformations.  He will help us with further genetic testing and research to determine what caused Dylan's brain to develop as it did.  Another specialist.  Another appointment to stress out about.  Another opportunity for an unexpected diagnosis to throw us onto a whole new course.  Ugh.

On the issue of the plates in Dylan's head fusing prematurely, Dr. Lim agreed that we had reason to be concerned.  She thought that his head felt very smooth and didn't have the typical ridges that can be felt between plates at this stage of development.  She also didn't have any explanation as to why he would have been born without a fontanelle (soft spot).  She ordered an X-ray of Dylan's head, which we were able to get done this afternoon, and hopefully we will have the results by the end of this week.  (Unfortunately poor Dylan screamed his little head off throughout the entire X-ray.  I'm pretty sure he was about as tired of being at the hospital as I was!)

So, at this point we are left with a TON of questions, and not many answers.  What we thought we knew before has all been negated with this new information, and we don't really even have enough of a diagnosis right now to do new research on what to expect!  I guess this whole "wait and see" game continues, with no end in sight.  My hope and prayer is that we are able to witness Dylan defying all of the odds and proving "them" wrong.  These specialists are only people, and they have no way of accurately predicting the future.  Even though we have been told that Dylan's brain is malformed, no one can tell us that he isn't capable of overcoming the challenges associated with that discovery. As I've said before, I am fully prepared to be amazed by this kid.

Defying the odds!

Despite his diagnosis, as of today Dylan is a completely wonderful, normal, amazing 2 month old!  I feel like when people hear that he has Microcephaly, they start looking for what's wrong with him.  He does have a smaller head than other kids his age, but other than that he is perfectly normal!  Here are some of the great things he is doing already.

SMILES!  Dylan shared his first smile with us on June 19th, when he was only 3 weeks old.  It was actually on the same day that we had that horrible appointment with the geneticist.  We had just received the devastating news on his diagnosis, and afterwards we drove over to my parent's house to pick up Jack.  My mom was holding Dylan as I tried to explain what the geneticist had told us, and Dylan looked up at her and gave her the most amazing, wide mouthed grin!  It was as if he was telling us "don't listen to those crazy doctors...I'm ready to surprise you all!"  I thought for sure that it must have been gas - three weeks seemed way to early for a genuine smile - but over the next few days he convinced us that he was really smiling!  It is absolutely heartwarming to see!

SLEEP!  Warning...if you are a new mom with a baby who gets up multiple times a night, you may want to skip over this section.  I don't want to loose any friends over this little brag session!  Dylan is sleeping at least TWELVE HOURS a night!  Seriously, Jack was a good sleeper as a baby, but Dylan is amazing.  I feed him around 8:00 pm, and he sleeps until 8:00 or 9:00 the next morning.  I've actually had to wake him up a few mornings!  I don't know how his little tummy can handle that long of a stretch at this point, but as long as he's happy I'm ok with it!  He has been sleeping stretches of 6-8 hours since he was just a couple weeks old, and has stretched it out to the full 12 hours as of this past week.  It sure makes dealing with everything during the day a whole lot easier when I'm able to get a good night sleep!

EATING!  Another area in which Dylan is a rock star!  He started nursing great right off the bat.  He lost just a few ounces right after he was born (typical of a newborn), and was already back up to his birth weight within a few days.  As of last Friday, just a couple days shy of his 2-month birthday, he had already doubled his birth weight.  This is actually a really encouraging sign, because most babies with neurological problems have a very hard time with breastfeeding.  Apparently the process of sucking, swallowing, and breathing at the same time is pretty complex, but Dylan was up for the challenge!  He eats just about every 2 hours throughout the day (which I'm ok with if he's going to sleep through the night!)

TUMMY TIME!  It gets a bad rap from most newborns, but Dylan LOVES his tummy time.  If he is fussy, I roll him onto his tummy and he is almost always immediately soothed. He has a really strong neck, and is happy to just hang out on his tummy and watch his brother play.

I'm being told that we can expect Dylan to start missing milestones and falling behind other kids his age, but so far that has not been the case!  This kid just continues to amaze me in so many ways.  I feel like he is starting off a lifetime of defying the odds and proving "them" wrong.  I can't wait to witness his development and report on his amazing progress!

Appointments

Since we found out about Dylan's diagnosis, I feel like my life has been spent taking him to appointments, scheduling appointments, and following up on appointments.  And I'm pretty sure it will only get worse before it gets better!  Thank God for great insurance (and for the fact that our deductible is already paid for this year!!)

One of the big ones that is coming up is with a Pediatric Neurologist. The appointment is next Tuesday, and I'm honestly scared to death.  Up to this point, we have had a lot of doctors and nurses tell us their opinion from the limited information that they have.  Most of the time it seems like they are running a quick google search on Microcephaly before they come into the room and tell us what to expect.  While this can be frustrating and leaves us with a lot of unanswered questions, it also allows us to remain optimistic.  I can choose to believe that some of the scary things we hear about, like seizures, won't actually become a reality for Dylan.  The Neurologist, however, will know enough to look at Dylan's MRI and give us a much better understanding of what we can expect for his future. I know that the more information we have about Dylan, the better off we will be to help him overcome the challenges that he is faced with.  But I'm just so scared that we will find out something new, and have to go through the process of acceptance all over again.  Our pediatrician has also been concerned that since Dylan was born without a fontanelle (soft spot), he may have Craniosynostosis (where the plates in his head have fused together prematurely).  If this is the case, Dylan would have a surgery to separate the fused bones.  This is a relatively routine surgery and, from what I've heard, recovery isn't all too horrible, but I just can't imagine the stress of sending my baby boy into surgery to crack his skull!  Hopefully next Tuesday's appointment will answer some of these questions.  Please pray with us that we receive good news, not bad, and that we gain a better understanding of areas that we can help Dylan.  And pray that I'm not a nervous wreck between now and then!

Things people say

I had the most horrifying experience today!

Let me set the stage.  I was out running errands with both boys.  I knew we were pushing the limits on Jack's nap and Dylan's next meal, but I really wanted to stop and pick up a present for a birthday party on Saturday.  So I did what every mom has done, despite the fact we all know better. From the moment we walked into the store, Jack started melting down.  He wanted to pull all of the toys off the shelves, not necessarily to play with them but just for the sake of pulling them down.  When I asked him to stop touching something, he threw his body on the floor in an all-out tantrum.  It was good old fashioned 2-year old drama (and very un-Jack-like, which proved how exhausted he was).  Dylan fussed off and on while I dealt with Jack and tried to pick out the gift, but by the time we were ready to make our purchase he was D.O.N.E.  This was a pretty small toy store, so my two screaming kids made quite an impression.

As we got up to the line, there was a lady in front of me.  She looked to be the grandma of four kids, all between the ages of 6-ish and 10-ish.  She started talking to Jack and commenting on how cute Dylan was (despite the fact he was screaming his head off).  I was focused on desperately trying to quiet Dylan and control Jack.  Meanwhile this lady continued to make casual conversation with me while each of her 4 kids approached the counter with a handful of .75 cent erasers, $1 bouncy balls, and a jar of coins to pay for their new treasures.  I was sweating as I imagined the looks that other shoppers were giving each other behind my back...judging me and my two screaming, misbehaved kids.

Here's where the experience becomes truly horrifying.  The lady turns to me, and says in a loud voice (in order to be heard over Dylan's screaming), "SO, ARE YOU PREGNANT AGAIN OR IS THAT JUST YOUR POST-BIRTH WEIGHT?"

Excuse me?

I have a two month old baby, Lady!  Now I will be the first to admit that the baby weight is hanging on a bit tighter this time around than it did when I had Jack two and a half years ago, but I really could not believe that this lady was asking me if I was pregnant!  I just stared at her, not having a clue how to react.  I responded in a snarky voice with a curt "No, I'm not pregnant" before I walked away to pick up the pile of books Jack had just knocked to the floor. Although I managed to stay pretty calm on the outside, inside I was SCREAMING obscenities at this frumpy old lady who would have the audacity to ask such an offensive question! We made it out of the store and back to the car before I said something in front of my children and her children that I might later regret.  

The reason I am telling this story is that, as I thought more about this stupid lady and her stupid comment throughout the day (you might notice that I am still a bit upset by it!), I started to see the lesson that I could learn from it.  My family is about to experience the joys of raising an amazing kid with special needs, but people won't always understand Dylan and his differences.  I know that there will be times when people stare too long, or say things about our angel that tear our hearts out.  This is going to be a daily part of our lives in raising Dylan.  Today I allowed the lady in the toy store to ruin my day with her offensive comment, but I can't let every stupid person with a stupid comment hold that power over me.  Part of this process will be to educate the world about who Dylan is and I pray that I have the will-power to do that gracefully and humbly, and with the understanding that people who don't understand a situation can sometimes say or do hurtful things.  My children will learn from my responses and I just hope that those responses are ones I can look back on and be proud of.

So, grandma from the toy store, if I could speak to you now I would say this:  "No, I am not pregnant.  In fact, my body just completed an amazing miracle by creating this beautiful life that you see before you.  I may not be the ideal weight or size, and my stomach is definitely squishier and rounder than it should be, but I would trade washboard abs and a tight butt 1,000 times over for the love that I experience when I see my baby smile at me.  Dylan and Jack don't care if I'm squishy.  In fact, a squishy mommy is just what they need at times like this when they are tired or hungry."

Too bad I can't go back and change my response. Oh well.  Maybe I'll do better next time...and I'm sure there will be a next time.

Brothers!

Dylan is the luckiest kid in the world to have Jack for a Big Brother! Seriously, these two absolutely love each other!  It is so amazing to watch the relationship grow between them.  For a 2 1/2 year old, Jack is amazingly patient and selfless when it comes to his brother. He is always thinking about Dylan and making sure he is involved in everything we are doing.   I assumed there would be jealousy since my time and attention, which used to be focused 100% on Jack, is now divided in half. But so far he is handling the transition so well and hasn't shown a bit of jealousy. He can't walk past Dylan without giving him a kiss.  It absolutely melts this mommy's heart to see my big boy falling so quickly in love with his baby brother.  

There are a lot of unknowns in Dylan's future, and it has the potential to be a tough road for him.  Knowing that he will have an amazing, loving, caring big brother looking out for him is one of the things that encourages me so much as I look forward.  Growing up with a brother who is different from the rest of the kids will be hard for Jack too, but I am so confident that, like the rest of us, Jack will become a stronger, more loving person because of the lessons he is able to learn from Dylan.