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.  

   

      

Genetic Testing

I found out last Friday that our insurance company approved us to do genetic testing for Dylan.  His diagnosis up to this point has been based on "process of elimination" - basically everything that they can accurately test for was ruled out and this is what was left over.  There are also defining physical characteristics of Microcephaly that Dr. Anadiotis could identify, and Dylan seems to fit the bill. Even so, it is important for Brian and I to go through with the testing in order to see if there is any other information we can get by identifying the gene that is mutated and the exact form of Microcephaly that Dylan has.

Apparently this is easier said than done with this particular disorder.  Because it is so uncommon, the testing is not super advanced yet.  Up to this point, they have found multiple different genes that can cause Microcephaly.  The test we were just approved for looks at a gene that has been found to cause 40% of the known cases. So if we get a positive result (ie. they find a mutation on the gene that is being looked at), then we can move forward with that diagnosis.  But if we get a negative result, it just means that we have to keep digging further to try and find the mutation.  We have been told multiple times that the odds of finding something at that point are small, and the testing process is extremely expensive. 

As of right now, I haven't decided if I'm hoping for a positive or a negative.  I guess we just have to wait and see what we get.  

Dylan had his blood drawn today, and we are being told that the test results should come back within 4 - 6 weeks.  So you can bet that we'll be pretty stressed out awaiting the results sometime between August 20th and September 3rd.  Please pray with us for peace and the right answer, whatever that might be.

Poor baby Dylan after his traumatic blood draw!

Dylan's Birth

Disclaimer:  This post is LONG!!  I started writing the story of Dylan's birth and the days following, and it just kept pouring out.  I wrote this for myself and my family, so that we can remember the raw emotion that we felt as we met and fell in love with Dylan.  Read at your own risk! :) 


Dylan was scheduled to arrive on June 3rd, 2013.  I was desperately hoping to deliver him naturally, after having a C-Section with Jack.  My pregnancy was smooth and uneventful, other than being completely uncomfortable towards the end (but who isn't, right?).  At my 38 week appointment, my OBGyn, Dr. Simpson, confirmed that I was 80% effaced, but hadn't started dilating yet.  This was an indication that Dylan was getting ready to come meet us sometime soon!

By my 39 week appointment, nothing had changed.  In fact, my belly hadn't grown at all in the previous week.  Dr. Simpson wasn't overly concerned, but she suggested that I go in for an ultrasound.  I remember she told me that it was up to me when we did it, we could wait a week if I wanted, but I said I'd prefer to do it as soon as possible.  I just wanted to see my baby and find out if this wait to meet him was almost over! So we scheduled an ultrasound for the following day, May 30th.

I went to the appointment all by myself, having no reason to be concerned with the outcome.  Brian was about to take 2+ weeks off of work when Dylan arrived, it didn't seem necessary for him to miss another day for this routine ultrasound.  As I lay on the table, the ultrasound tech was asking me about my first delivery and making casual conversation about how excited we were to meet Dylan.  He was moving around a lot, kicking and stretching, and it was fun to see him on the screen.  After a while she seemed to get pretty quiet, so I tentatively asked her how everything looked.  She mentioned that my amniotic fluid levels were very low, in fact she could find no measurable fluid.  I knew this meant we would likely be meeting Dylan sooner rather than later!  Since his heart rate was strong and he was moving all over the place, I wasn't overly concerned. The ultrasound took much longer than I was expecting, almost 45 minutes.  I remember thinking I wished she would just hurry up so that I could call Brian and tell him.  As she finally finished, she said that the doctor would want to see me before I left.  I waited in the ultrasound room for a while and was eventually moved into an exam room to wait.  Since Dr. Simpson was gone for the weekend, I would see one of her partners that I hadn't met before.  As I waited for him to come in, I sent out some texts to my friends and family..."Looks like we will be heading to the hospital soon....fluid is low, not sure what this means yet..."

The doctor walked in and just the look on his face made my heart drop.  It was the sympathetic look of someone who is prepared to deliver bad news:  head slightly tilted to the side, furrowed brow.  He pulled up a chair and sat directly in front of me, placing his hand tentatively on my knee.  I thought to myself - either this guy is super dramatic, or there is something wrong other than low amniotic fluid.  His first words were, "I'm sorry....it's always hard to deliver bad news to someone you've just met."  He went on to explain to me that my son's head was measuring significantly smaller than expected.  Most likely, this meant that something had gone wrong developmentally, probably caused by a chromosomal abnormality or a viral infection during pregnancy. Developmental problems.  I just stared at him.  My worst nightmare, every mom's worst nightmare, was coming true.  Honestly, I don't think what he was telling me registered at all, I was in such shock I couldn't even hear the words coming out of his mouth.  He went on to explain that I also had a dangerously low level of amniotic fluid, and that it was important to deliver the baby as soon as possible, the risk being that Dylan could roll over on his umbilical cord and cut off his lifeline.  I was going to have another C-Section.  Since I had just eaten lunch, this meant we would have to wait until 8:00 pm for the food to get out of my system.  I asked if I could go home and get my stuff, and he said as long as I could make it back to the hospital within 30 minutes I could go home (thankfully we only live 5 minutes away).  I knew there were a thousand questions I should ask, but all I could do was thank him as he walked out the door and wished me luck.

I think the severity of what he was telling me truly sunk in when I said it out load for the first time.  I called Brian to update him and completely lost it.  It took me forever to get the words out.  I cried with a pain I have never felt before.  I was terrified by the prospect of what we would find out when they delivered our baby.  Hopes and dreams I had for his future seemed to disappear as I started to think about the possibilities.  Brian immediately left work and met me at home, where we threw some things in the car in a complete daze and got back in the car.  Brian later told me that he ran three red lights in the 1.5 miles from our house to the hospital (I didn't even notice at the time).

I was checked into a room and hooked up to a non-stress test, where they could monitor Dylan's heartbeat.  He was still healthy and showing no signs of distress, so we were pretty much left alone by the nurses.  It was 2:00 pm when we arrived, and we were scheduled to deliver Dylan at 8:00 that evening.

The next 15 hours felt like a lifetime.

We had apparently arrived on the WRONG night.  Emergency after emergency delayed our delivery.  We kept being told that since Dylan was still so strong and healthy, they had to focus on others that were not in such a good position.  At one point in the middle of the night, Brian was so frustrated by the delays that he threatened to leave and find another hospital that was willing to make us a priority.  We were assured that they would get us into the operating room as soon as possible.

Finally, at 5:00 am on March 31st, eleven long and emotional hours later than we were expecting, we were taken to the OR.  Along with the typical surgery personal, there was a team of three NICU nurses in the room, ready to evaluate Dylan as soon as he came out and intervene if he had any problems.  I was terrified.  I tried to be optimistic and excited about meeting my baby, but the prospect of receiving devastating news when he was delivered was overwhelming. The surgery was quick and routine, and we held our breath as they pulled him out.

I heard him screaming....good news.  I encouraged Brian to go over and meet him as the nurses evaluated him.  "Five Pounds, Fifteen Ounces," I heard one nurse announce.  Dylan continued to scream with a healthy set of Lungs. "Nineteen Inches long."  I started to picture this little baby they were describing with a set of measurements.  I waited for the chaos I had prepared for, tears streaming down my face, as I lay strapped down to the operating table.  Within a few minutes Dylan was calmed down, wrapped up in a blanket, and his daddy was proudly carrying him across the room to meet me.  "He's fine," he told me in a whisper as he choked back tears.  Apparently the NICU team had evaluated him and found nothing wrong, so they shrugged their shoulders, congratulated Brian, and walked out of the room. Brian placed Dylan's head right next to mine, and as I looked at his tiny face for the first time I was so overwhelmed with love.  He was perfect.

The next few days in the hospital brought about a complex mix of emotions.  On one hand, we had a completely healthy, strong newborn.  He was an enthusiastic eater from the start!  That was encouraging, especially since he was pretty small.  He had no medical concerns.  In fact, the doctors and nurses were all surprised by how strong he was!  I'm pretty sure everyone was expecting him to have some pretty significant health problems at delivery, so it was wonderful that Dylan was proving them all wrong.  We were so excited to welcome this new member of our family!

But on the other hand, we were being told that there was something terribly wrong with our baby, and we were scared to death.  Nurses came in and out of the room with a look of sympathy on their face.  Family members held him cautiously and evaluated to see if they could find anything unusual.  I stared for hours at this precious newborn, waiting for a clue as to what was wrong.

Dylan was tested for a long list of things.  Viral infections, chromosomal abnormalities, etc. He had blood drawn, urine samples taken, an ultrasound on his head, and even an MRI.  One by one, the tests came back negative.  After a few days, we had ruled out some pretty scary things.  The same doctors that refused to give us any hope three days earlier, started hinting that his outlook might not be as grim as they initially expected.  Maybe Dylan was just born with a small head that would eventually grow to average size, without any lasting effects.

Brian and I were thrilled.  After being devastated for days by the prospect of something being wrong with our baby, it was so wonderful to get all of this positive news.  We sent out messages to our family with each negative test result, checking things off the list!  Everyone celebrated with us as we began to release our fears that Dylan would have long term problems.

Until June 17th, when our pediatrician called and suggested that we meet with a geneticist.

What is Microcephaly?

Why should I talk about it?

I have NEVER blogged in my life.  I never thought I would be a blogger.  In fact, I have always been convinced that I would never have anything interesting enough to say in a blog.  And then my whole world was changed by a simple diagnosis.

Learning that your child is going to grow up with special needs is HARD.  The past few weeks I have struggled so much to accept this reality.  But at some point, I have to accept it and move on, and do everything I can to provide Dylan with the tools he needs to succeed despite his challenges.  But I've never raised a child with special needs before, and I had NO idea where to even begin.

So I started reading.  Thank God I live in an age where resources are available to me online.  I read medical journals & clinical studies about Microcephaly, and walked away more confused than when I started.  The technical nature of most of the information I came across was overwhelming.  Eventually I found a Yahoo group and later a Facebook page for parents raising children with Microcephaly.  Here I was able to read through old posts and see what other parents were dealing with.  But this still only gave me a little snapshot into their lives.  After each post I read, I found myself wanting to know the story of what they had come through to get them to this point.  Finally, I started searching for blogs.  These were written by people like me, who started the process of raising their precious children full of hope and dreams and were devastated by a diagnosis. Even though their stories are completely different than mine will be, it was so helpful for me to read real life accounts of families raising children with Microcephaly.  I sympathized with their heartache, but most importantly I was able to rejoice in their successes.  

I don't think I will ever be a blogger who updates every day with a new anecdote of my children's lives.  But I do hope that something I say will one day help a mom who has just had her world torn apart by a doctor's announcement that her baby was born with Microcephaly.  I know that my family will learn a ton of lessons through this journey; who am I to keep what I learn to myself?  I hope I can be honest.  I hope I can laugh and cry and share Dylan's struggles and triumphs.  I hope we can prove the doctors wrong.  I hope, if you read this, that you won't judge me as I go through this process.  I hope you can pray with us for miracles, whether they be huge or small.  And most of all, by telling our story, I hope that the world will grow to love Dylan as much as I already do!

What is Microcephaly?

What is Microcephaly?

The honest answer is....I have no idea.  There is just not a lot of great information out there, at least that I have found.  I am still in the process of learning about and figuring out what we are dealing with, so forgive me if the information I pass on is incomplete or even inaccurate.  I'm sure 10 years from now I will be able to tell you all about microcephaly, but for now I'm pouring over one technical medical site after another and trying to interpret what I read and what I'm being told.

"Microcephaly" means "small head."  As I have come to understand, microcephaly is associated with many serious conditions, but typically it is a side effect of these conditions.  All by itself, Microcephaly is highly uncommon, and this is the form that Dylan has. His diagnosis is Primary Autosomal Recessive Microcephaly, which means it was present at birth, genetic, and caused by a recessive mutated gene that both Brian and I are carriers of.  Apparently different populations have a higher occurrence of this mutated gene (such as Middle Eastern and Asian), but as I mentioned before the incidence among Caucasians is as low as one in a million.  With a recessive genetic disorder, both parents have to be carriers.  Brian and I are as Caucasian as you can get and have no known family history of Microcephaly, so the odds of us both carrying this mutated gene, finding each other, and making babies together is pretty low!

We found out about Dylan's diagnosis on June 19th, 2013.  He was 2 1/2 weeks old.  We knew from birth that something was "wrong" with him (more on that later), but we hadn't been given an explanation yet.  Dr. Anadiotis, a geneticist at Randall Children's Hospital, had the unpleasant task of delivering the news to Brian and me.  We were, as you can imagine, devastated. Dylan had been tested for a whole host of things in the weeks prior to our appointment with Dr. Anadiotis, and everything kept coming back negative.  We were getting more and more optimistic as we continued to be told by doctors that our baby may just have a small head without any of the associated conditions.

Dr. Anadiotis explained to us that Dylan's small head also means that he has a small brain.  He had an MRI when he was just a few days old, which confirmed that his brain "architecture" was all normal (meaning he had the proper ridges, etc), but the size is much smaller than it should be.  He told us that this means Dylan will have "moderate to severe intellectual disabilities."  Maybe he will struggle to get a C on his math tests...or maybe he will struggle to ever speak in full sentences or write his name - we'll just have to wait and see.  He shouldn't have any major motor problems, but we can expect him to be late achieving some of his development milestones.

Dylan's head will always be small, which will give him a "different" appearance.  Again, the degree of this is unknown.  This is one of the hardest parts for me to accept.  Kids can be so mean, and the idea that my baby will be bullied or left out because of his appearance is devastating.  

And that's about all we know at this point.

The theme of what we are being told is to just wait and see how Dylan develops.  I feel like it is important for me personally to research as much as I can and to read about other families who have raised children with Microcephaly, just so that I have an idea of what types of challenges we can expect in the future.  However, I am fully aware that given the nature of this disorder, Dylan will NOT follow the same path of development as anything I am reading about or any other microcephalic children that we learn about.  It is so important for us to focus on Dylan as an individual right now, and rejoice in the fact that he is an amazing 7 week old baby boy who will eventually grow into a remarkable young man, no matter what challenges or delays he faces along the way

One in a Million

Dylan, our sweet baby boy, was born on May 31st at 5:30 am.  He was born perfect.  He was born weighing 5 pounds, 15 oz and 19 inches long.  He was beautiful.  He was born strong and healthy and full of life.

And Dylan was born with Microcephaly.

The past two months I have been working through the process of accepting this diagnosis, and allowing myself to say it out loud.  Now it is time to put it in writing.  To let the people in my life, in Dylan's life, know that our precious baby boy will be different.  What this means for him is still unknown, and will likely continue to be unknown for a long time.

What we do know is that Dylan will have more struggles than most kids.  He should crawl and walk and develop all of his gross motor skills, but he will likely be delayed compared to other kids his age. We also know that he will have intellectual disabilities, the extent of which are completely unknown.  We know that he will require extra help to reach milestones that most kids and parents take for granted.  We know that we will have physical therapists, occupational therapists, and speech therapists involved in his development.  We know that Dylan will look different from the other kids.  We know that, as his parents, we will be faced with the overwhelming task of raising a special needs child.

But most importantly, we know that Dylan will change the lives of everyone who has the honor of knowing him.  He was placed in our lives - and in your life, if you are taking the time to read this - in order to bless us in some unknown way.

As his mom, it is so hard to look past his diagnosis and accept that this was God's will for his life and for the life of our family.  For some reason Dylan inherited a genetic disorder that has an incident rate of 1/1,000,000 in Caucasians.  ONE IN A MILLION!  And he was given to Brian, Jack, and me.  There are a thousand questions that I will likely never have answered. Why Dylan? Why me? Why our family? How can I possibly manage this responsibility?  But in the midst of all of these painful questions is the hope that God doesn't give us more than we can handle.  I have to remind myself of this a thousand times a day and I have NOT fully accepted that it's true, but I really have no choice other than to believe it.

Primary Recessive Autosomal Microcephaly.  Four words that forever changed my life.  To what extent....we will all have to wait and see.