Today is rare disease awareness day, and as you know, our home has been impacted by a rare genetic brain abnormality.

But “rare” is irrelevant when it happens to your child.

Lissencephaly is believed to occur in around 1 in 100,000 births.  Due to the shortened average life expectancy, its prevalence among the population is even more rare.

Within Lissencephaly, the breakdown is believed to be as follows:

• Type 1 – 43%
• Type 2 – 14%
• Other – 43%

Our boys do not yet fall in to known types of Lissencephaly, so they are in the “other”, unexplained group and may contain a gene mutation shared with few in the world, or possibly unique only to them.

Our boys are also identical twins, which occurs in 1 in 300 births.

If you combine that they fall in to the 43% of 1 in 100,000 AND are 1 in 300…that comes to 143 in 10 billion births.

The current population of the ENTIRE WORLD is estimated to be just over 7 billion.  And as alluded to earlier, the active prevalance will be much lower than the birth rate given that the average life expectancy is a far too short two years.

You might say these little guys beat the odds just to exist.

Here’s to beating the odds for years to come.

I have written a lot of things that I haven’t shared with you.  And because of that, I know what happened on February 24^th one year ago.   Here’s a little (lengthy) glimpse:

Conceiving K took us 13 cycles.  I told you earlier I was a spreadsheet person, so don’t act surprised that I knew that.  That’s not “forever”, but it feels like a long time when you’ve decided you’re ready.   Once we got pregnant, that pregnancy was smooth.  No blood pressure issues, no sugar issues, no swelling.  My weight gain was reasonable (for those with reasonable expectations) and all in all I felt pretty good the entire time!  We enjoyed taking belly pics, planning the nursery, had 4 showers thrown by far too generous friends, family, and coworkers, and soaked up all of the fun moments that pregnancy can bring.  Even the delivery was a smooth one.  My water broke in the middle of the night; we arrived at Labor and Delivery by 2:30 am, and had a beautiful, healthy, perfect baby boy in our arms by 11:44am.  He literally made eye contact with me the moment they handed him to me, and calmly held it while I talked to him.  I knew then he was something special.  He’s still something special.

Over the next two years we had multiple discussions about when and if to expand our family.  Do we definitely want more kids?  We want to try.  When should we start?  That’s a tough one.  We don’t want to rush it, but we don’t want to wait so long that fertility becomes more of an issue this time around.

We decided to start trying when our first son turns two.

Once we made that decision, the months waiting for “go time” seemed so long!  I started prenatal vitamins several months ahead of schedule just to get ready.  We wondered how long it would take.  I hoped to get pregnant by the following January (meaning it would take one year again).  K would be 3 and a half before the little brother or sister arrived.  We were such good planners!  We managed to wait until our goal.  My first ovulation window was right around K’s 2^nd birthday, so true to our plan, that’s when we tried for the first time.

Both Justin and I are career oriented as well.  We take our education and careers seriously, and try to support each other in seeking out challenges and growth.  Justin had just finished up with the PE exam, so we decided he could return the favor of taking the lead on evenings with K and house work, and I would study for the CPA exam.

My evenings were spent busily learning about equity method investments, derivative accounting, LIFO schedules, and other fascinating topics.  Justin and K were loving their man time.  This was working out nicely.

On the evening of February 24^th, I was particularly distracted in my studies.  For reasons I can’t fully explain, I decided to pull out a pregnancy test that was leftover from when we were trying for K.  I’m fairly sure it had expired.  And I wasn’t due for another day or two.  There was no reason for this test to work, but in case you haven’t figured it out, I was looking for a reason not to study that Sunday evening.

I quietly took my little test, went downstairs for a drink and a snack, then returned upstairs to the office to resume studying.  As I walked by I glanced at the test with no expectations.

Two lines.

TWO

LINES.

I looked closely at it again.  Can this be right?  Is this expired test faulty?  There’s no way we got pregnant on the first try.  That doesn’t happen to us.  Clear as day…two little pink lines stared back at me.

K is 3 years old!  What a special little guy he is, and such a blessing to our family.  The past year has been a memorable one.  There were some emotional ups and downs, and some stress on K  as our family grew and adjusted, and even coped with nearly two months apart.  But when all was said and done…he emerged as a more mature, more gentle, incredible big brother.  The same kid who jumps off of couches, tackles anyone who sits on the floor, and sleds down hills reserves only the most gentle kisses and sweetest words for his little brothers.

Some big developments this year:

• Learned to ride a bike with training wheels
• Moved in to a new bedroom, and a big boy bed
• Fell out of aforementioned bed and broke his first bone (collar bone)
• Became a big brother
• First Concussion (what are we doing wrong here?)
• Potty trained!

K can spell his name, count to thirty something depending on the day, and count by 10’s to 100.   He also recognizes all the letters now.

Here are some of his favorites:

• Letter: K
• Number: 3
• Color: Green and Yellow
• Food: FRUIT, and anything sweet.
• Drink: Strawberry Milk
• Show: Paw Patrol
• Movie: Toy Story
• Toy: Train puzzle, building blocks/Legos, tool set
• Friends: Claire
• Song: Big Hairy Spider (?)
• Activities: ride bikes, play in the snow, chase, telling stories before bed, and bath time!

Some stats from his checkup:

• 35 lb 9 oz (75%)
• 38 1/4 in  (75%)

And of course…some photos!

Unfortunately, the mom who used to do this:

…is lucky if she remembers to dry her hair and eat dinner.  So…instead of a 3 year photo shoot, I’ll include a slide show of the past year.

Positive Pregnancy Test! Big Brother in the making!

A favorable cardiology checkup!

Meeting Thomas

First real train ride

Swimming Lessons

Mothers Day

Easter

The life of a boy…

School Pic

Comparing Bellies

Gender Reveal

Meeting Nolan

Meeting Landon

Ice Cream!

Time for a wagon ride!

NICU visit

His playground for two months!

Dressing himself

Proud Big Brother

Big Brother taking a break

Christmas time!

LOVED the mini tablet from mom and dad.

CHEESE!

Broken collar bone – tough patient indeed!

Frist time playing in the snow!

Always plenty of kisses to go around

THREE!

K – I am so incredibly proud to be your mommy.  You literally make me better.  Happier.  More complete.  Your words, your prayers, your songs, your laughs, your hugs and kisses make our family what it is. You will do big things.  Big things indeed.