Friday, December 2, 2011

Great I Am

There is a song that we sing in church that gets me every time we sing it.

Its a beautiful song. 

Very powerful.

Maybe you've heard it.

Its called "Great I Am"

And one lyric in particular just pierces my heart.  Every single time.  In a good way.

Its a line that, had I not lost my dad, would probably not have much meaning.

And honestly those who have not experienced a loss like that, might even find those words grotesque.

But they bring me great comfort.

I want to see dry bones living again.

I well up just thinking them.

When I sing those words, I think of my dad and other loved ones lost.

Living again.

The day my dad died, my idea of heaven got a little sweeter.

I do want to see dry bones living again. 

I desperately do.







Sunday, October 2, 2011

Walking For Our Babies

Its that time of year again.  October.  Time for pumpkins.  Hoodies.  Bonfires. 

And the Small Wonders Miracle Walk :)

Its the annual fundraiser for the neonatal intensive care unit at the Children's Hospital of Illinois.  It was started 5 years ago by a group of NICU parents who wanted to give back to the NICU.

Its hard to describe the connection that we, as parents of NICU graduates, have with the NICU staff.  I mean basically, they were like the 3rd parent to our babies at a very critical time in their lives. 

It is a connection that will always be there.

I can't and don't even want to imagine what our lives would be like today, had it not been for the neonatologists and neonatal nurses who took such awesome care of our babies.

The Children's Hospital of Illinois NICU is a Level 3.  That's the highest level.

It is one of the best NICUs in the country.

Do you know that our NICU serves 24 counties in Illinois? 

24 counties!

That means literally dozens upon dozens of hospitals are sending their smallest and sickest babies to Peoria.

750 babies come through the NICU each year.

There are many families traveling long distances.  Just to be with their babies.

How fortunate are we, to have this awesome facility right in our backyard!

The Small Wonders Miracle Walk and Silent Auction will be Saturday, October 15 at the Riverplex in Peoria.  Auction opens at 9am.  Walk is at 10. 

We have an amazing silent auction committee that has been working very hard getting donations together.  We have Disney tickets!  And Continental Airlines tickets!  Along with lots of great local business donations too.  There's something for everyone :)

We also have a lot of fun things going on for the kids.  We have inflatables.  The Unique Twist will be doing balloon creations.  Zoo Lady will be face painting.  And new this year, the Glitter Fairy will be doing glitter tattoos!

Its also a really neat opportunity for families to reunite with the doctors and nurses who took care of their babies in the NICU.  As you can imagine, this can be a very emotional thing.  Its my favorite!

Money raised through this event will directly fund patient and family centered programming specifically in the NICU.

Consider this. 

No one ever PLANS on needing the NICU.  We certainly didn't.  But the moment our babies were born at 29 weeks and 5 days, weighing just 3 lbs and 2 lbs 9 oz, suddenly we DID need it, in a tremendous way.  And they were there for us when we did.

Join us in supporting a wonderful cause.

Babies.  The tiniest and sickest ones.

If you are unable to come to the event but would like to make a donation, you can click here.

Sunday, September 18, 2011

Floaters


A few months ago, we were out to dinner with friends.  You know, having some adult time.  And yet, being the parents of small children as we all are, the conversation of course went south quickly. 

To the oh so appetizing topic of pooping in the tub.

See, our friends' daughter is a notorious tub pooper.  And her older brother does not find it amusing.  So each night before bathtime, they have a little ritual where they go around and say: Mommy's not going to poop in the tub, no she's not.  Daddy's not going to poop in the tub, no he's not.  And on down the line. 

So everyone gets the idea that pooping in the tub is not cool.

As they were telling this story, I was laughing hysterically.  I mean, who ever heard of this?   It was something we had never encountered before.

Yet.

I am not kidding, that very week.  I had the girls in the tub.  And you know there are lots of things in the tub.  I mean, besides 2 girls, you've got washcloths, soap, toys, and books.

The girls are standing up, sitting down, switching places.  You know, standard bathtime fun.

Well as they were scooting past each other, toys and books were swirling from one side to the other as well.

And poop.

Poop?! 

Yep.  There it was. 

Several turds.

Just floating along in the bath water. 

Trying to blend in.

There is poop in my tub!

I stared in shock. 

What do I do now?!?

My instinct was to yell: Mom!!!!  Help!!!!

And then it hits me.

Oh, wait.  I'm the mom.

Oh poop.

Get the babies out first.  That's the first step.

Then the toys.  Put them in a bucket.

Then the poop.

What's the best way to get the poop, you ask?

A solo cup.

Do not use toilet paper.  Seems like common sense I know, but in a moment of panic, you might instinctively reach for it. 

Bad idea.  It disintegrates immediately of course, leaving you with a handful of poop.

Once the poop is out of the tub, drain the water.

Break out the bleach.  Disinfect the tub and the toys.

Draw new water. 

Wash the babies (again) and get them the heck out of there before the other one poops!

Wednesday, September 14, 2011

Recipe: Barbeque Meatballs

Trying something new here: posting a recipe to my blog :)

This recipe, along with many others in my recipe box, comes from my dear friend Kathie Quisenberry, who is one of the best cooks I know.  She has cooked many times for my family over the years, including weekly meals when our twins were in the NICU.  This recipe is Noah's absolute favorite and the girls love it too.

Okay so I even took some fancy pictures as I was cooking today, so you can get the full effect.  Well, not the full effect I guess, since you didn't get to smell how awesome my kitchen smelled today while they were cooking!

Barbeque Meatballs

Ingredients:

2 lbs hamburger
8 oz evaporated milk
2/3 cup old fashioned oatmeal
2/3 cup cracker crumbs
1 large egg
1/2 cup diced onion
1/2 tsp garlic powder
1 & 1/2 tsp salt
1/2 tsp pepper
1 & 1/2 tsp chili powder


Mix all together using hands.  Roll into balls.  Place into baking dish.



Sauce Ingredients:

2 & 1/2 cups ketchup
1/2 cup diced onion
1 & 1/4 cups packed brown sugar
1/2 tsp garlic powder
1/2 tsp chili powder




Pour sauce over and bake 1 hour at 350 degrees.

And enjoy :)




















Couple tips:

If you follow the recipe as is, it makes A LOT of meatballs.  So this is great if you have a large family to feed.

But for us, halving the recipe works just fine and makes plenty for the 5 of us.

Also, this is a great recipe for freezer cooking!  Sometimes I will make up a whole batch, then only cook half, and freeze the other half.  If you are going to freeze the meatballs raw, I would recommend setting them on a cookie sheet and placing them in the freezer overnight.  Once they are frozen, just pile them into a freezer bag marked with the date and freeze them for up to 6 months.  The sauce freezes great too.  Just pour it into a freezer bag and freeze.  When you are ready to use it, just thaw it out and cut a corner off the bag to make pouring over the meatballs super easy. 

So that's it!  Let me know what you guys think :)

Tuesday, August 30, 2011

Lenay's Little Heart

Lenay saw her cardiologist this morning.

We were there for about 3 hours.  Luckily I brought lots of snacks! 

She laid very still for her echocardiogram.  I was shocked!  It takes about 25-30 minutes so thats a long time for a 2 year old to sit still.  But they had cartoons on and Mommy was feeding her little princess grapes (literally) so that helped.

She also tolerated her EKG extremely well.  Another shock.  A test that should take a total of one minute usually takes more like twenty along with the help of several adults.  This time, she acted very interested in the whole process, and then even helped to attach and detach the cables when asked!

She's such a big girl.  But I mean come on, she is two now.

Our doctor peeked his head in after he reviewed the tests and told me he needed to get more blood pressures on her.  He wanted pressures on her arms and legs.

She has had elevated blood pressure for a while now, due to the increased pressure gradient in her aorta from the obstruction, and we knew this.

But it dawned on me today that I have never asked what her pressure should be.

Turns out her top number should be right around 100.

And hers is consistently in the 130s.

The good news is that according to the pictures from the echo, her heart is unchanged.  It is no better, but it is no worse.

We thank God for this, because if it was any worse, meaning any thicker, then we would be talking more surgical intervention.

But since it is no worse, we can continue to play the waiting game.

Patience.

And since we are in "uncharted territory" as the doc said today, we can't really know how long it will take.

He is concerned about her pressures, so he prescribed a blood pressure medicine for her today.

She is now on 3 cardiac meds.

We will go back in a week for blood work to see how she is reacting to the new med, and then we will see him again in 2 months to see where we are with her blood pressure at that time.

The funny thing about Lenay is that you would never know she is a heart baby.  I've had several medical professionals read her chart and then tell me they are shocked when they see and observe her.  Because she just doesn't let it get her down.  We could all take a lesson from her. 

I mean just look at her.  Singing and snacking while she waits.





Love you babe.  I am so blessed.



Monday, August 29, 2011

Cam's GI update

Campbell went back to see the gastroenterologist last week. 

She gained a pound and a half in six weeks!

She is now just shy of 20 pounds.

He said I don't know what you are doing but it is working!

I said we are doing ice cream three times a day :)

He thinks that if she continues on this path she may actually be on the growth chart here very soon.

I am just absolutely amazed by her.  A short couple months ago they were talking about putting a g tube in her.  And just look at her now!  She is doing such a great job eating.

God is so good.  Our prayers were answered :)

We also saw the pediatrician last week and it was a big day for Miss Lenay.  She is now in the 10th percentile for height and weight!  Who knew something as simple as gracing the growth chart would be such a milestone?  The things we take for granted when we have a healthy baby.

Lenay goes in to see her cardiologist tomorrow.  She will have an echocardiogram and EKG.  We will see how that little heart of hers is doing. 

Praying for more good news.

Sunday, August 28, 2011

I Will Carry You

I just read the most beautiful book.

Its called "I Will Carry You" by Angie Smith.

Angie tells the true story of she and her husband Todd's 4th child, a daughter they named Audrey Caroline, and how they found out during a routine ultrasound that she would not survive beyond birth.  She had conditions that were deemed "incompatible with life."

It was recommended that they terminate the pregnancy.  But they made the decision to carry the child anyway.

Their story was heart wrenching.

Angie and Todd never wanted to give up on their daughter.  Their faith in God was strong as they prayed for a miracle.

Audrey Caroline lived for two and a half hours after she was born, which was a miracle in itself.  She was tiny, weighing in at only a little more than three pounds.  And she was beautiful.

I believe this story would hit home with any mother. 

Unfailing and undying love for your child.

From the moment it is known that she exists inside you.

And the grief and loss when the unthinkable and the unexplainable happens.

It was God's perfect timing that this book was placed in my hands within the week of the anniversary of the loss of our second pregnancy.

8/28/07.  A date I have tattooed on my body in memorial of a baby we never had the chance to meet.

We sisters in Christ know that we will see our babies again someday.

Todd Smith is in the Christian band, Selah.  And they wrote this song for Audrey.











Friday, August 19, 2011

August Chaos

The most important events in our lives all happen in 9 days.  Our three children's birthdays and our wedding anniversary.  Throw in a trip to Vegas and the start to a new school year and you can get a glimpse into our crazy life :)  Oh, and why not add a CT scan and abdominal ultrasound?

Noah turned 7 years old.  He wears size 10 jeans.  The kid is gigantic.  :) 

He had his friend party at a Chiefs game.  We had 7 kids.  And 6 adults.  When I was planning this out, I thought that was a good kid:adult ratio.  Turns out a few more grownups might have been nice :)  The kids had a good time though.  Noah got to throw out the first pitch and he thought that was pretty cool.  The weather was perfect and it was a fireworks night.  So fun :)

Eric and I celebrated our anniversary by going to the Miss Marigold Pageant rehearsal (super romantic I know) and out to dinner at Granite City, my fave.  We also celebrated the week before by going to Las Vegas with 6 of our closest friends.  We had a lot of fun, but were glad to get home.  Especially since the flight home was a little scary.  On our descent into Peoria, the guy across the aisle from us had a seizure and passed out.  People were panicking but luckily there was a nurse on board to help.  Keep in mind this is happening while we are going down.  I think the pilot may have been a little rattled by this medical emergency, and we hit the runway hard (I don't want to say we crash landed...but it was rough) and then the pilot was putting on the brakes but we were still racing down the runway at what seemed like full speed.  We were looking out the window at everything flying by, thinking are we ever going to stop?!  We did, just in time, but it was seriously frightening.  Never so glad to be back on the ground and in one piece :)

Lenay and Campbell turned 2 years old.  2 years old!  We did a family party for all three kids.  I said gifts were optional, yet now my house is somehow filled with new toys?  Its crazy how spoiled my kids are.

I made a new video for the girls' birthday and put it on youtube.  You can view it here.

Noah started the first grade this week.  He loves his teacher, loves going to school all day, loves riding the bus, loves lunch and recess, and loves earning "Kober Bucks."  I'm so glad :)  I just pray that it continues.

Last week I went in for my CT scan and abdominal ultrasound.  I was thankful that Eric was able to get time off work to go with me.  The ultrasound was no big deal. 

Have you ever had an ultrasound before? The tech asks me as I pull up my shirt.

Um, tons.

This was different than anything I've had in my life though.

As she starts the sono, Eric leans over to her and says:

There better not be a baby in there.

We laughed.

Next was the CT scan.  They had to start an IV, which is never easy.  They ended up calling in the veteran, and she got it on the first try.

They told me that when they inject the dye, I would feel a warm sensation all over, and it would feel like I peed my pants.  Nice.

I went through the machine 3 times.  Once before the dye, once with a little dye, and once with the bulk of the dye.

What a weird feeling.  I mostly felt it in the back of my throat.

We went out for bagel sandwiches and headed home.

I got a call the next day from my doctor.  When I saw the caller ID, I was initially worried.  See they had told me it would be 3-4 days before I would hear back since it was such a specialized scan, and I know from past experience that when they get back to you right away with results, it can be bad news.

I was wrong.

No aneurysms!!  Woo hoo :)

We've got more craziness coming up.  The girls will see the pediatrician, Campbell sees her gastroenterologist, and Lenay will see the cardiologist for an EKG and echocardiogram.

Will keep you posted.


Sunday, July 24, 2011

Aneurysm

That's a scary word.

And its become all too familiar a topic of conversation in our house here in recent times.

In the last four years, four of my family members have had aneurysms.  Three of which were cerebral, one aortic.  All from my mom's side of the family.

The first one was a shock.  My uncle, 4 years ago.

The second seemed all too familiar.  My aunt, 2 years ago. 

The third happened right after the second.  My other uncle, 2 years ago. 

And the fourth was perhaps the most concerning.  My 22 year old cousin, this year.

So, when I saw my doctor for my annual physical last week, we discussed my concerns about this family history I now have.  And she told me she would like to have a look at my own brain and aorta.

Let me tell you this is not good for my hypochondria.

My dad died of AML at age 57.  And you should know that because of that, every time I get a bruise of any sort, I watch it like a hawk to make sure it disappears. 

Kind of morbid, I realize.

So I am looking forward to getting some peace of mind in regards to this aneurysm threat.  In 2 weeks, I am scheduled for a CT scan of my brain and an abdominal ultrasound to check my aorta.

My mom has been tested, and everything checked out okay.  What a huge relief.

I'll be okay too.

Saturday, July 16, 2011

Prepared for a Throw Down

Campbell has been doing great with her eating! 

I am so proud of her :)

We've been having ice cream at least 3 times a day.

Even so, I've been dreading her gastroenterologist appointment.

This would be the first time we would see him since the surgical consult, when the other doc vetoed his decision that Cam needs a g tube.

He wouldn't be happy about this.

And honestly, I'm a huge chicken.  I made sure Eric could meet me so I didn't have to face him alone.

We went in prepared.  Prepared to be told off.  Prepared to tell him off.  Prepared to walk out of his office, never to return.

As we waited in the exam room, I had some weird thoughts.

Do we still stop at the desk on our way out after we have our big throw down?

Will the other patients hear us screaming at each other through the walls?

Is Eric going to physically assault this doctor?

Do we need a lawyer?

Just then, there was a familiar knock at the door.  Eric and I looked at each other and put our game faces on.  Expecting the worst.

And we could not have been more wrong.

He came in, Campbell's chart in hand, smiling from ear to ear.

Well, I don't know what you are doing, but you are doing something right!

I stared at him, dumbfounded.

I also heard, I am so proud of her!

And pinching her arms, Look at this fat!

Not a word was mentioned about the surgeon.  Not a word about the g tube.  Not a word!

He shook our hands like five times I swear.

He said to keep up the good work, and come back and see him in six weeks.

Eric and I walked out of his office smiling and laughing.

Pretty much the opposite of what I had pictured in my head :)

Monday, July 4, 2011

Sweet Relief

We went to the surgeon's office first thing Thursday morning.

Campbell was weighed.

I held my breath.  As I do everytime I set her on a scale.

The digital scale was flashing as it calibrated her weight.

Blink.

Blink.

18 lbs 12 oz.

Two weeks before, she weighed 17 lbs 11 oz.

I let out the breath as my slow brain was registering the math and the shock.

That is over a pound in just 2 weeks!

That is huge!

Amazing.

God is so good.

I breathed a little deeper as we walked to the exam room to wait for the doctor.

Eric and I were armed with 3 things.

Campbell's growth chart, courtesy of our pediatrician.

Her speech evaluation, which Campbell scored very high on for her actual age, not adjusted.  (This is a big deal for a preemie.  Preemies are measured by their adjusted or corrected age until they turn two.  So the fact that she is doing so well for her actual age is very exciting for us.)  This would help to prove she has good cognitive function.

Her developmental evaluation.  While she does have a couple delays, she has improved greatly since her last eval a year ago.  Last summer, her adaptive care domain was at 100% delay.  Now, it is only at a 35%.  And in order to even qualify for Early Intervention services, kids must present with at least a 30% delay.  Therefore, 35% is very low on the spectrum.  This eval would show that she is really coming along with her milestones and catching up.

(I do want to point out that it really was God's perfect timing in all this.  We had these evaluations scheduled months in advance because Campbell's annual IFSP meeting is coming up in July.  It just so happened that her PT, DT, and speech evals fell right in between the gastro appt and subsequent surgical consult??  Evals that would provide crucial and imperative information regarding her development??  Looking back on all this now, I am just completely amazed by how He worked all that out for us.)

The surgeon came in.  He remembered Eric right away from when he operated on Lenay almost 2 years ago.  He repaired her inguinal hernia when she was still in the NICU.  I found it absolutely amazing that he remembered him since he has literally operated on over 15,000 kids.

He studied Campbell.  He studied the paperwork we presented him.  He looked at her growth chart for a long time.

Well, she's not excelling in her growth now is she?

Definitely not, I said.

I explained that she had been sick before her last gastro appointment.  And we pointed out her whole pound gain in 2 weeks.

He asked about her milestones, and we pointed to the evals, showing that she is making strides and catching up.

He looked down at the chart again.  Then took a long look at Campbell, who was chomping on a Ritz.

Well, I think she's bought herself a pass.

I felt myself sit up a little straighter as the weight lifted up off my chest.

I wanted to kiss this man.

Now, she has no margin for error.  She needs to continue to gain weight at a steady rate in order to keep me away.

Got it.  No offense, but we hope we never have to see you again.

None taken.  I get that a lot.

He thanked us for bringing in the paperwork.  He had referred to it throughout our visit as being very helpful information.

We walked out of his office in complete and utter relief. 

No g tube for this girl.

And so we headed down to the Spotted Cow to buy her a big cream cheese cinnamon roll.

Sunday, June 19, 2011

Clutch Player

A few days have passed and this g tube idea just doesn't seem any better.

A few things to report:

1) Campbell went to the Children's Hospital yesterday to get some labs drawn. 

BMP, T4, TSH, CBC

Our pediatrician will get the results, and if anything seems funky then the endocrinologist will see her.

2) We have our second opinion scheduled with another pediatric gastroenterologist in Peoria.

It will be the same day as the surgical consult.  Please pray for us on June 30!

3) We have been doing our best to stuff Campbell with calories.  Milkshakes, ice cream, hamburgers, things with butter, you name it.  We stopped giving her juice and replaced it with yogurt smoothies instead.  Juice is an appetite suppressant and it has little calories.  Also, her gastro doc put her on a higher calorie pediasure.  Didn't even know they made such a thing.  He gave us quite a few samples so that should last us a couple weeks.  Then I will have to figure out where to buy the stuff, since I know they don't carry it in stores.  Pharmacy or online I would suppose.  I'm sure its not any cheaper. 

But we'll do anything to keep a tube out of her!

Campbell has physical therapy and feeding therapy this week.  I'm anxious to talk to our speech path about the g tube to see what she thinks and if she has any ideas for us.  They will be doing both a PT eval and a speech eval (she's never had one of those before) so we can see where she is developmentally in those areas.

Eric is confident that Campbell will pull it our here when it counts, like she always does.

 He says she is a clutch player. 

The Anti-Lebron, if you will.

Wednesday, June 15, 2011

Just When You Think You Are Out Of The Woods

Campbell saw her gastroenterologist yesterday.  She had lost about half a pound since last month.  She has been sick with a cold and ear infection, so I wasn't surprised that she hadn't gained weight.  But I was surprised that she had lost that much.

He then told me that he would schedule an appointment with the pediatric surgery team so they could discuss a g tube placement for her.

Um.  What?  She's been sick.  That's all.  She'll gain it back, I said.

He then produced her growth chart and told me that she falls far below the growth curve, and she's been leveling out over the last few months, rather than climbing.

He went on to explain more about the g tube, the pump, feedings in the night, etc.

I stared in disbelief.

She's just been sick.  She's better now, I said.

She needs the g tube, he said.  We've done everything we can to increase her calories.  We've given her enough time.

You really feel this is necessary??

I absolutely do, he said.  If we don't do this, then we run the risk of long term brain development problems.

I just couldn't believe what I was hearing.

Long term brain development.  Those words got my attention.

He told me the nurse would be in to schedule our surgical consult.  He left the room, and I sat holding my baby. 

Crying.

She's been doing so great.  We've been seeing him for the past year, along with our feeding therapist.  And in that time, Campbell has made tremendous strides.  A year ago, she was fighting through her bottles and refusing anything on a spoon.  She actually enjoys eating now.  I mean, I recognize that she doesn't eat as much as her sister, but I feel like the pediasure and duocal should be making up the difference.

And her energy level is high.  I always say she is my cat napper.  Honestly she sleeps no more than 40 minutes at any given nap.  And she's always the first one up in the morning.  5:30 anyone?  She's been walking all over the place lately, and she's just a very active toddler. 

I made sure he knew all this. 

He just kept saying: she needs the g tube.

I left his office with 2 words on my mind:

Second.  Opinion.

I immediately called our pediatrician.  After all, he had referred us to this GI doc.  I wanted to pick his brain to see if there was anyone else he would recommend.

He suggested making a referral for Campbell to get an endocrinology consult in Peoria.  See if there is an underlying metabolic problem.

I was told it takes 48 hours to hear back from the endocrinologist's office, so we are waiting to hear.  If we can't get in soon, then we will be heading to Chicago Children's Memorial or St. Louis Children's Hospital for more answers.

We have a surgical consult scheduled for June 30.  Its the same surgeon who performed Lenay's hernia repair when she was just 3 pounds in the NICU.  We are going to keep this appointment and talk with him about her growth.  We'd also like to know more about the surgery and the g tube.

We want to get some answers so we can make an informed decision.  We just want to do what is right for our little girl.

Thursday, June 9, 2011

I'm Hitting the Road Jack :)

Summer has begun!  Noah is out of school and I'm out of a job :) 

Yes I quit my job 2 weeks ago.  I was only supposed to work there for 6 months while I finished my last semester of college, and somehow I ended up staying 24 times longer (12 years!)  What is up with that.

So we are pretty busy.  Noah is playing baseball in 2 different leagues.  He is taking swim lessons.  He has basketball camp. 

And I am his chauffeur :)

Swim started this week.  Lessons are every day Mon-Thurs.  The pool offers Toddler Time at the same time, so I figured that would be a good way for the babies and I to hang out while we are waiting for Noah. 

Sure beats sweating to death while staring longingly at the water.

After spending a half hour in the toddler area at the pool with my two babes, I learned that my life is about to get a lot more complicated.

Lenay likes the water.  She was a little timid at first because the water was a little cool, but she walked right up to the water table and pretty much parked herself there for the rest of our time there.

Campbell has more discriminating tastes.  :)  She prefers that I hold her on my hip where she can live vicariously through her sister.  I could tell she was interested in the whole water table idea, but actually standing hip high in the water just wasn't something she was willing to sacrifice.

I did finally get Campbell to sit in the 0 depth area and splash a little bit in the cool water.  She seemed to not hate it :)  Just about that time, Lenay lost her balance and fell face first into the water.  She stood up immediately, but she took in some water and was obviously terrified.  She was frantically looking for me, and I couldn't get to her fast enough, even though I was only a few feet away.  Luckily Campbell was content to sit while I dashed over to scoop up her sister.

Whew!

Just then Noah finished his lesson, and we piled into the family changing room. 

And just so you know, 1 adult and 3 wet, wiggly kids take approximately 30 minutes to simply get into dry clothes.

Thursday, June 2, 2011

Friends from (before) the Beginning


Lenay and Campbell have known their friend Ella since they were born.  Literally. 

Ella made her grand entrance into this world prematurely as well.  She shared a room in the NICU with Lenay and Campbell.  I wish we had a picture of the three of them in the NICU together. 

Ella's mom and dad and I have also known each other since we were born (it seems anyway!)  The three of us actually started in the same kindergarten class at Marquette Elementary, and continued to be in the same accelerated classes all the way through grade school and middle school (with the exception of 5th grade, when they did something funky with our classes that year.)

Time marches on, and God made sure that I was reunited with Jeff and Kelley in the NICU in 2009 with our little miracle babies.

Kelley and I have gone through a lot together with these babies, and I'm so grateful for our renewed friendship!  We've had to lean on each other in times when no one else could relate. 

Ella is an amazing little person who has been through a lot in her little life!  You can read more about Ella's story at Fairy Tale Endings

We've taken pictures of the girls over time, and most recently just this week.  Its amazing to see them grow and to look back and see how far they've come.


Sunday, May 22, 2011

The Team

Campbell has had a busy few weeks.  Its a good thing she has me to run her around to all her appointments!

We saw her physical therapist.  He was very impressed with her walking, of course.  :)  He says she is roughly at about 12-15 months for her gross motor skills.  (She is 21 months old, 18 months adjusted.)  We will only continue to adjust or correct her age until her 2nd birthday, which will be coming up here before too long.  He also recommended that she get orthotics for her tiny pronated feet.  Her low tone contributes to the fact that her ankle bones are rolling down, so these orthotic inserts will help to keep her feet in a neutral position.  Daddy went out and bought her a new pair of shoes for the occasion (We've actually never bought shoes for the girls before!  We've been so lucky to have so many given to us that we've never needed to.)  They are Nikes and they are very cute.  The orthotics fit right in, and no complaints from her so far!

Then we saw her gastroenterologist.  He was not happy to find that she had only gained 4 oz in 2 months.  She did however grow 2 inches (give or take) so that counts for something.  The reason I say give or take is because I find their height measurements to be very subjective, depending on who is doing the measuring.  Not just at this particular office, I'm talking at all of the different doctors we go to.  Getting the girls measured so much and so often, I've actually witnessed them shrink at times.  Even when the same person is measuring them time after time, its not always consistent. 

I walked into the GI office with some extra cans of Duocal, the caloric supplement Campbell no longer takes, thinking that I would donate it to the office so another patient could use this extremely expensive stuff.  Well, that visit didn't end the way I envisioned it.  Not only did he send the cans back with me, but he also sent us home with some more free samples.  Which I appreciated, but just the idea that she has to go back on this stuff is discouraging.  We add it to her food, either by mixing it in or sprinkling it on top, to help her take in additional calories.  I feel like she is doing so much better with her eating, so it is disappointing when we aren't seeing results. 

Her next appointment was with her speech pathologist for feeding therapy.  She was very happy to see Campbell eating so well, and in turn she was also disappointed to hear that she was back on the Duocal.  She said we could talk to the doc about a possible dietician referral.  She thought a dietician might be able to help us pack in more calories (in a healthy way I mean - we can't just slather everything in butter you know.  We don't want to give the child high cholesterol!) and then maybe we could get off the supplement.  Our speech path is also trying to come up with creative ways to get Campbell to drink more from the cup.  She does drink some, but she is still getting 2-3 bottles a day as well.  Next month, she will do a speech evaluation on Campbell to see where she is developmentally with that.

I just got a call from Campbell's developmental therapist, and we scheduled her bi-annual evaluation for June.  She hasn't seen Campbell in 6 months, so I'm anxious to see what she thinks.

Our IFSP meeting is scheduled for July.  This is when we meet with Campbell's entire Early Intervention care team, which consists of her physical therapist, occupational therapist, developmental therapist, speech pathologist, and our case worker.  And us of course.  We are considered part of the team too :)

Tuesday, May 17, 2011

Today Is Brought To You By The Number 12

Twelve.
Thats the number of scars.
The number of scars that Campbell has.
The number of scars that Campbell has from IVs, transfusions, and PICC lines.
Wow, right?
But wait.

That's just her right arm.
That's not counting her other arm, her head, and her legs.
It just occurred to me the other day.  That I had never counted them.  We were sitting by the window.  Daylight was streaming in.  The tiny white spots appeared illuminated on her delicate skin.  I noticed.  And I started counting.
I lost count a couple times and gave up. 
It literally took my breath away.
These are battle wounds from the NICU.
These are the wounds you acquire when you are fighting for your life.
Lenay has countless scars also.  And both girls have lumps on their heels, reminders of the many heel sticks they received in the NICU.
Scars and heel lumps are common among preemies.
I have this great book, The Preemie Parent's Companion, which talks about these scars, and how they grow bigger and become more obvious in the first 2 years of life.  It goes on to say that in the next couple years, they will fade and become less conspicuous.
There is something beautiful about all scars of whatever nature. A scar means the hurt is over, the wound is closed and healed, done with.  ~ Harry Crews

Monday, May 9, 2011

Waiting

So this morning I got the much anticipated call from our cardiologist.

As soon as I saw the caller ID, my own heart jumped.

Lenay's heart surgeon attended a national conference and presented Lenay's case to the top specialists from the US and Europe for advice on how to proceed with her little heart.

I was about to find out if:

A) Lenay is having major surgery.

B) Lenay is having minor (yet still heart) surgery.

C) We are waiting and seeing.

I held the ringing phone in my hand and took a deep breath.

Here we go.

Hello?

I closed my eyes as I braced myself for the news.

The consensus is that we just need to be patient.

Some of these doctors have actually seen this problem before, and they said as long as there isn't any progression, there is no need to intervene. 

Her heart will grow.  And the pressure gradient will go down. 

In the meantime, she will be watched closely with echocardiograms and EKGs.

I felt so much lighter as I hung up the phone!

Its not like we can get a better opinion.  I mean, we've had doctor after doctor, expert after expert, reviewing her case.  From all over the world. 

And they are all saying the same thing.

Just wait.  Be patient.  And see.

We gladly will :)

Sunday, May 8, 2011

Mama Bear

So there's this neat blog network made for and by Moms of Multiples (MoMs) and its appropriately called Multiples and More.  Each week they pose a question for other MoMs to answer. 

This week's "Question Of The Week" is: What is your favorite thing about being a MoM?





This is such a good question.  I think I can speak for many mothers, and not just mothers of multiples, when I say that my children have given me an enormous sense of empowerment.

(Sidenote: I'm kind of on an empowerment kick today because this weekend I was able to take all the kids out on a major shopping outing and to church this morning all by myself, and we all survived.  I feel I can do anything!)

As a parent, and I mean from the moment you find out you are carrying a child (or 2 ) you automatically become an advocate for that child.  You're not just looking out for #1 anymore.  That protective Mama Bear instinct kicks in and you know you will do anything for your cubs.   

In my case, I became a protective Mama Bear when my son Noah was on the way.  I had no problem asking many a stranger to put out his cigarette.  :)

5 years later, our twins were born premature, which brings us to an interesting point in our journey as their parents.  They spent a lot of time in the NICU, which in many ways, makes parents like us feel powerLESS.  It is as if the hospital is the parent, and we are just friends of the family.  They do their best to help us not to feel this way, but it is a difficult thing when you are leaving your precious babies in someone else's care.

Cut to: now. 

20 months later.  Both girls have been in and out of the hospital.  Both are still being followed by specialists.  I have copies of their medical charts and let me tell you, I could fill a bookshelf with them!

When a child has a medical condition, the Mama Bear becomes more fierce. 

She needs her questions answered.  She does research.  She seeks out advice.  She gets to know the doctors better than she ever thought she would.

All in the name of her children.

Empowerment.

My answer is empowerment. :)


Friday, May 6, 2011

Your Angel

Once upon a time there was a child ready to be born.

The child asked God, "They tell me you are sending me to Earth tomorrow, but how am I going to live there being so small and helpless?"

God replied, "Among the many angels, I chose one for you.  Your angel will be waiting for you and will take care of you."

The child further inquired, "But tell me, here in heaven I don't have to do anything but sing and smile to be happy."

God said, "Your angel will sing for you and will also smile for you everyday.  And you will feel your angel's love and be very happy."

Again the child asked, "And how am I going to be able to understand when people talk to me if I don't know the language?"

Again God replied, "Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak."

"And what am I going to do when I want to talk to you?"

God said, "Your angel will place your hands together and teach you how to pray."

"I've heard that on Earth there are bad men.  Who will protect me?"

God said, "Your angel will defend you even if it means risking its life."

"But I will always be sad because I will not see you anymore."

God said, "Your angel will always talk to you about me and will teach you the way to come back to me, even though I will always be next to you."

At that moment there was much peace in heaven, but voices from Earth were heard and the child hurriedly asked, "God, if I am to leave now, please tell me my angel's name."

"Her name is not important.  You will simply call her MOM."

~Author Unknown



Happy Mother's Day to all the angels in my life :)

Tuesday, May 3, 2011

Once Bitten


Campbell didn't get her first tooth until she was 16 months old.

And now, at 20 months, as far as I can tell she has 6, including 2 molars.

...and she is learning how to use them.

By taking bites of her sister.

So, Noah never bit anyone (to my knowledge) and so I've never had to deal with this particular kid thing before.

Let me paint a picture for you.  So last week, we were just hanging out at home.  I was cleaning things up at the sink after lunch when suddenly I hear a blood curdling scream come out of Lenay.  I look over, and not only has Campbell bit Lenay, but her jaws are still completely locked down on Lenay's poor little arm.  She's like a pitbull!  Lenay was standing there in complete and utter shock, her pleading eyes locked on mine. 

Help! 

Apparently, they were having a little spat over who got to play on the dragon ride on toy, and Campbell decided to end the argument abruptly by munching on her sister.  I scooped her (Campbell) up, told her no biting, and put her in timeout. 

Which lasted about 10 seconds.

And thats ok.  The separation is enough for her to understand that she doesn't like being taken away from the fun.  And maybe biting is a bad idea if that's where she ends up.

Cut to: an hour later.

We are all playing, laughing, having a good time.  Lenay and Campbell are playing with the multitude of empty buckets they received on Easter.  Buckets are fun.  You can stack them, put toys in them, carry them by their handles.  Fun.  Until Lenay made the lethal mistake of picking up the bucket that Campbell was getting ready to grab. 

Uhhhh! Campbell yelled, and this time I saw the whole thing.  In slow motion. 

At the same time, it happened so fast I didn't have time to intervene.  And I was sitting right there with them.

Campbell leans way over, her mouth open at the ready, bottom jaw jutted out.  Her head is shaking in a no-no fashion and her eyes are wide with frustration.  She clamps down on Lenay's (other) arm, and bears down with all she's got.  Lenay screams bloody murder, and looks over at me with that same "help me!" expression.

Once I pried the little piranha off her sister, she got another no biting! and timeout.

10 seconds later, everything was cool.

Well, its been a week since the 2 bites incident.  And even though the skin wasn't broken, Lenay still has matching welts on both arms.  Campbell has actually done remarkably well since then.  There have been a few times where I was able to anticipate and diffuse the situation before any chomping occured.  But then last night when I got home from work, Eric told me she struck again.

Its like living with a vampire. 

Did they cast for Renesmee yet?

Thursday, April 28, 2011

Uncomfortable Patience

Our cardiologist brought Lenay's case to conference with his group this week, and the doctors were unanimous.

They are all uncomfortable with the narrowing in her heart.

But they all believe that patience will provide the desired outcome.  Her little heart just needs to grow.

Okay, so that's good.  Everyone is on the same page.

But wait, there's more.

The doctor who performed Lenay's surgery is attending a national conference next week.  This is a conference at which all of the top experts in the field from all around the country will be at.  And when I say experts, I don't just mean in pediatric cardiology. 

I mean these are the top experts in the specific field of surgical procedures to correct problems like Lenay's. 

And she will be presenting Lenay's case to these experts.

Is it just me, or is this God's perfect timing?

Thursday, April 21, 2011

Cardiology and Multiple Therapies

Campbell saw the cardiologist last week too. 

He can still hear her murmur slightly, which is due to her pulmonary valve stenosis.  Its a preemie thing, and we've known about it since she was a wee little one.  She is working on outgrowing it.  Go Cam.

She came off her cardiac medicine in December, and since then her event recorder, holter monitor, and EKGs have looked "fantastic" according to our doc.  No more arrhythmias for her!

He did say that there is a chance that her arrhythmia could come back down the road.  He said sometimes it reoccurs around 10-12 years old.  Not a big deal, just something to watch out for.  By that time, she would be able to feel it, and would be able to tell us something is going on.  Cardiology will continue to follow her too, which is good for our peace of mind.

She bought herself a pass for the next 8 months!  Good job Miss Campbell.  :)

She also saw her physical therapist and speech path that same morning (it was an exhausting day) and everyone thinks she is doing great!  She has made tremendous strides in the last few months.  Only thing our PT mentioned was that she is showing slight pronation and may need more supportive shoes, but we will just wait and see.  He said that pronation is common in babies with low tone, and also in babies who are learning how to walk.  She is both of those things, so he will watch her and see how those little feet do in the next few months.

We saw her occupational therapist today (try and keep all these therapists straight, okay?) and she also thinks that Campbell is doing great.  Last time she was seen 4 months ago, she wasn't feeding herself or holding a cup.  During her evaluation today, she was showing off her oh so efficient pincer grasp, drinking from her cup, turning pages in a book, putting together a puzzle, and some other quite impressive things.  Our OT said she is at about 15-16 months for fine motor (she is 20 months old, 17 months adjusted) so she is still delayed, but closing the gap. 

I'm so proud of her.  :)

And she has taken her first steps.

That's right.  Campbell is walking!

Last summer when Lenay was on the brink of walking, and Campbell was only just barely rolling, let alone doing anything else, I was concerned. 

More than concerned. 

Scared.  Scared she wouldn't ever walk.

And as you know, she hated eating.  She had terrible GERD and a learned behavior to refuse food.  She had poor weight gain and even lost weight. 

And here we are a year later.  And after the developmental screening process, qualifying for early intervention services, a year of PT, OT, and feeding therapy, I have a baby who walks and feeds herself.

I have a baby who walks!

And feeds herself!

Wow.

The things that many other parents take for granted.

We are so blessed.

Monday, April 11, 2011

Waiting on A Little Heart

Lenay's heart is not better. 

But its not worse.

I'm so grateful that its not worse!

She had her sedated echocardiogram today and our doctor was able to get some very good pictures of her heart.  The best pictures yet actually.  It might have had something to do with the fact that she was "drunk" as the nurses so affectionately described her.  :)  Eric stayed in with her while Campbell and I went to therapy, and by the time I got back she was still sobering up, bobbing and weaving, and laughing randomly.  :) 

Her blood pressure is elevated, which is to be expected, given that the occlusial device that closed her PDA is sticking up just far enough into her pulmonary artery to cause a greater pressure gradient.  And her heart appears "thick" but no thicker than it looked 4 months ago.

So where do we go from here. 

We have 3 options:

1) They can do an angioplasty of sorts.  Go in through the groin, expand a balloon in her heart to try and make more room in the artery.

2) Do a more invasive surgery where they would go in, remove the device (which has been in place for over a year and her heart has grown around) and reclose the PDA with a clip instead.  Our beloved doctor referred to this as "tricky" - not a word I like to hear my doctor say about my daughter's heart surgery!

3) Wait and see.

Our doctor is very thorough, and he values his collegues' opinions.  He will bring her case to their conference next week and see what they think.  He has already talked with the surgeon who performed her original surgery, as well as Texas Children's Hospital (they are world renowned for pediatric cardiology) and so far the consensus is to play the waiting game.

I'm okay with that.  Once again, God is teaching me patience through these children.  It's not one of my strong suits, and He knows that.  He is teaching.  We are all learning. 

Learning while we all wait for a little heart to grow bigger.

Tuesday, April 5, 2011

What's Your Sign?

When Noah was a baby, I read a book called Baby Signs.  It changed the way I thought about communicating with my baby boy, so I gave to both of the Grandmas to read as well, so we could all be on the same page with Noah.  It made such a difference in our lives that I have since bought a copy of this book for each expectant mom I know :)

Baby signs have been around forever (hello...ever seen a baby wave bye-bye?) but only in recent years has this form of communication been brought to light and really gotten the attention it deserves.  Its so simple.  Yet so impactful.

No, signs are not just for hearing impaired babies, as I have to explain to many strangers who ask me after observing my communication with the babies.

And no, baby signs do not delay a baby's speech development, as I have also had to explain to many a stranger.

It actually helps babies to speak sooner than they would otherwise.

Why?

Because once a baby realizes that she can communicate her needs via baby signs, literally thousands of neurons begin firing in her brain.  Much sooner than if she was waiting until she could actually speak the words she wants to say.  The earlier these neurons fire, the sooner those parts of her brain develop.

And its not just beneficial from the anatomical brain aspect.

Its also beneficial from the keeping-your-sanity aspect. :) 

It eliminates so much frustration between parents and babies!  When a baby can tell you she wants a cracker, or a drink of milk, or that she is hurt, you can immediately meet her need instead of guessing what on earth she is crying about. 

Both of my twins use baby signs, but I will use Campbell for an example.  When she signs banana to me, and I say, "Campbell do you want a banana?" her face breaks into a huge grin and I can tell she is just so proud of herself for communicating that need with her mama.  She is so excited to tell me not only what she needs, but also about what is going on around her.  When Leia walks by, she signs "doggie."  If we are looking out the window, she signs "outside" and "bird" if we see one.  She signs "eat" when she is hungry, and "bath" whenever she gets bored because that is her absolute favorite thing to do. 

They both sign many more words as well, and we are adding more every day.  I've even seen them sign to each other, which is adorable of course.  I've yet to be quick enough to capture it on video, but I'll keep trying.  :)

Thank you baby signs.  You've made such a difference in the lives of all three of my children.  And mine too :)

Monday, March 28, 2011

The Flux Capacitor

We are going. 

Back to the future.

Which is actually the present.  :)

So here's where we are with the girls.  In real time. 

Campbell is off of her cardiac medicine.  (Yay!)  And she is currently being weaned off her prevacid.  (Yayy!!)  She is very close to being med free for the first time since birth.  That is an awesome feeling my friends.

Campbell is still being followed by her cardiologist.  She goes back to see him in April.

Campbell is also still being followed by her gastroenterologist.  Our last appointment was a couple weeks ago, and he told me at that time that he would like to see her on the growth chart for weight by the time she is 2 years old.  (Me too man!)  We go back to see him in May, and at that time we may possibly be able to switch from pediasure to regular old milk.  Our wallets would like that very much.

Campbell is also seeing her physical therapist and her speech pathologist for feeding therapy once a month.  She is also scheduled to see her occupational therapist for another evaluation in April.  Her PT has been very happy with her progress and said he would continue to see her until she starts walking.

Lenay is still on both daily aspirin and cardiac medicine for her PDA closure issue.  She goes back in for a sedated echocardiogram in April, and we are praying for some good news.

And we also have another child.  :)  His name is Noah, in case you haven't heard of him.  He has sort of been in the background on this blog so far, but he is actually quite an important player.  He is such a big help with the babies and he absolutely loves being their big brother and protector.  Eric and I try to do fun things with just him on a regular basis to remind him just how important and special he is to us.  Whenever we are out in public as a family, people have a hard time seeing past the twins.  As parents of twins, we've learned to expect random strangers to stop and ooh and ahh over the babies, and I'm always sure to point out the big brother, and what a good job he does being just that.

This blog is very therapeutic for me.  :)  It has helped me to count our blessings.  When I think back over these last 19 months, and how much our lives have changed, I can't help but smile.  God has given us so much to be thankful for.

Roads?  Where we're going we don't need...roads.

Wednesday, March 23, 2011

The Big One

August is the craziest month at our house. 

Eric and I got married in August. 

Then Noah was born in August. 

Then Lenay and Campbell were born (unexpectedly) in August.  (We wanted an October birthday, darn it!) 

School starts in August.  Can we cram anything else into August?

Turning one year old was kind of a big deal.  :)  It was such an important milestone for the girls!  They had come so far in those twelve months.

They had a Baby Einstein theme :)



I had taken pictures of the girls together every month of their life, and we displayed those pictures on a Baby Einstein Caterpillar for everyone to see.



I made a picture collage for each of the girls on large canvases.



I put together a tribute to the NICU, complete with one of the tiny sleepers Lenay wore when she was still under three pounds.

We had invited our primary nurse from the NICU, Tracy.  She had emailed me ahead of time to tell me that she would be unable to make it, because she had to work.  We were disappointed that she couldn't make it, but we understood she had other tiny babies to take care of too.  :)

Amid the chaos of the party, I was in the kitchen, getting the girls' cakes ready for them to mess, when Eric walked in the back door and said:

Look who's here!

I turned around.  It was Tracy!  I screamed.  :)

She was still in her scrubs.  She had convinced her charge nurse that she just had to get off early so she could go to her babies' birthday party!  <3

Words could not describe how excited I was that she made it!  She had been with us from the beginning.  So it was only right that she be there for their birthday.  And she had helped us through so much.  She took excellent care of our babies.  And us. :)  We love you Tracy!


The babies had a great day of celebration. 
What a year it had been!




Sunday, March 20, 2011

Milestone

One of the biggest moments of the year for us was the opening of the Milestone building for the Children's Hospital of Illinois in August 2010.  This was a project that had been in the works for many years, and we were able to watch much of its development over the previous year, during all of our trips to and from the hospital.  And when the work was finally completed, we were able to take a couple tours of the new facility, and then we were there to help transition the NICU families from the old unit to the new unit on the day of the big move.

A lot of work and planning goes into moving the hospital's tiniest and most fragile patients, and everyone involved did a fabulous job.  Our job, as NICU graduate parents, was to provide support for the NICU parents as their babies were transported through the many halls and elevators to their new home.

We were very excited to show these families all of the perks of the new NICU, and these families that made the transition were for the most part also very excited to make the move.

The old NICU was basically 5 large rooms, containing anywhere from 4-8 babies or more in each.  They were referred to as Room 1, Room 2, Room 3, Room 4, and 1218, which was on a different floor.  There was no such thing as privacy.  The new NICU is set up completely different, with "neighborhoods" and each baby has his or her own room.  That's right.  Private rooms for every baby!  And they have twin rooms also, so parents don't have to divide their time between rooms anymore. 

AWESOME!

The new unit is state of the art, and it is beautiful.  :)  We were so excited to be a part of the transition.

But I have to say that participating in this monumentous event stirred some feelings in me that I did not expect.

As the babies were paraded out of the rooms, I felt surprisingly sad.

Seeing Room 1, the most critical room, where both Lenay and Campbell spent their first days of life, empty?

It made me feel empty too.

And Eric and I walked the very last family out of 1218, where Campbell spent her last few weeks before being discharged about a year before.  As we did, I glanced back at the now vacant space, and the memories came flooding back.  We had been there for so many weeks.  So many emotions. 

Finally taking Campbell home to join her sister and brother after 10 weeks in the hospital so we could finally be a family.  It happened right here.  In this room.

And now it was empty.

It can be compared to buying a new home.  You are really excited about your new home.  It is nicer.  It is bigger.  It has so many things that you didn't have in your old house. 

But you have so many memories in that old house.  Maybe you got married or started your family there.  And it can be hard to leave it!

Like I said, it really took me by surprise.  I didn't expect to feel that way about the old NICU.  Part of me felt sad that when the girls get bigger and we take them back to visit, they won't be able to see where they got their start.  Where their mom and dad sat at their bedsides and stared at them in their little plastic houses.  And held their tiny hands through the open isolette doors.

But I am so happy for the current and future NICU families.  They will never know the old NICU and will probably never know how good they have it in the new facility, but thats okay :)  They are making their own memories with their sweet babies and thats what is important.

Wednesday, March 16, 2011

To You, My Sisters

My good friend introduced me to this beautiful poem.  Thank you, Tanya.

To You, My Sisters
By Maureen K. Higgins

Many of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the internet, on playgrounds and in grocery stores.

I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my sisters.

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist’s offices and NICU units, in obstetrician’s offices, in emergency rooms and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn’t quite right. Then we found ourselves mothers of children with special needs.


We are united, we sisters, regardless of the diversity of our children’s special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children’s needs are not as “special” as our child’s. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know “the” specialists in the field. We know “the” neurologists, “the” hospitals, “the” wonder drugs and “the” treatments. We know “the” tests that need to be done, we know “the” degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, nephrology, endocrinology and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive and to flourish. We have prevailed upon the state to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.


We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during “tantrums” and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox or ear infections. We have learned that many of our closest friends can’t understand what it’s like to be in our sorority, and don’t even want to try.

We have our own personal copies of Emily Perl Kingsley’s “Welcome to Holland” and Erma Bombeck’s “The Special Mother.” We keep them by our bedside and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbor’s front doors on Halloween, and we have found ways to help our deaf children form the words “Trick or Treat.” We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We’ve gotten up every morning since our journey began, wondering how we’d make it through another day, and gone to bed every evening not sure how we did it.

We’ve mourned the fact that we never got to relax and sip red wine in Italy. We’ve mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we’ve mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we always keep the faith. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and homeruns. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.