Happy Birthday! Our Turtles are 10

10 years ago we saw them for the very first time.  It wasn’t time for us to meet them but we didn’t have a choice.  I was suffering from preeclampsia and our babies had to be delivered 6 weeks early. All kinds of questions were swirling in my head.   Will they be healthy?  Will they be able to breathe on their own? How much are they going to weigh?  When will I get to hold them?  How long will they be in the NICU?  How are we going to handle 2 babies in the hospital and 2 little girls at home?

At 8:25 a.m. on March 29, 2005 our girls were born.  Baby A looked really big.  She was 5 lbs. 12 oz.  My heart sank as I saw Baby B for the first time.  She was so tiny weighing in at only 3 lbs. 15 oz.

They were quickly whisked off to the NICU.  Both were put on CPAP machines to help them with their breathing and they also had feeding tubes.  They wheeled my bed into the NICU so that I could see them.  As I touched their little hands for the very first time, I felt guilty.  I felt like I had failed them.  It shouldn’t be this way.  I only saw the girls for a few minutes and then I was wheeled back to my room.

My room was filled with grandparents anxiously awaiting the names of their new granddaughters.  Brett wanted to give me the honor of announcing their names.  But I was so emotional that I didn’t feel like I could even talk.  So Brett made the big announcement.  Baby A’s name was Mikayla Grace and Baby B’s name was Hope Evangeline.

Mikayla Grace

Hope Evangeline

I spent the whole day in my room not able to see my babies.   In the evening they sat me up in a wheelchair and I was able to go back into the NICU to see the girls.  I still wasn’t allowed to hold them, but I got to see them.

The next day my blood pressure went sky high and I was having blurred vision.  I spent the whole day in bed and wasn’t able to see our girls.  It was an absolutely horrible day.  I started feeling better in the evening.  They brought me a wheelchair and took me to see the girls.  The nurse asked if I would like to hold them.  They are 34 hours old and I haven’t held them yet, so YES I would love to hold them!  I held Mikayla first and I cried.  Then I got to hold our tiny little Hope.  Hope wrapped her little hand around my finger.  And I cried some more.  It was a beautiful ending to a really tough day.

I was released from the hospital when the girls were 3 days old.  They pushed my wheelchair out the front door, I climbed in the van, and we drove off and left our babies at the hospital.  We didn’t even get out of the parking lot and I totally lost it because I felt so empty leaving without our babies.  I couldn’t even imagine the ache that a mom feels when she has lost her baby.

The girls were born during RSV season.  Taylor and Brynna weren’t allowed in the NICU.  They could only take a peek at their little sisters through the window.  Since we live an hour away from the hospital and our older girls weren’t allowed in the NICU,  I made a difficult choice.   I would only go see Mikayla and Hope every other day.  Taylor was 8 years old and Brynna was 4 years old.  They didn’t deserve for their Mommy to disappear for weeks.

The girls were 5 days old when they had their first bottle.  Hope had to stay in her isolette while the nurse fed her.  But I got to hold Mikayla while she had her first bottle.

Hope

Mikayla

Mikayla

Hope was having trouble taking her bottle.  Daddy gave her a pep talk.  He said “Now Hopey, you’ve got to start eating, or they won’t let you go home.”  Two nurses were standing behind Brett and they were both giggling because they got to witness the cutest father/daughter moment ever.

The NICU called me on the days that I didn’t go see the girls and they would give me a report of how they were doing.  Those calls helped me get through the days when I couldn’t be with them.  But then the call came that changed our world.

Hope had a heart murmur.  So they ordered an echocardiogram and they found two problems.  She had a very large hole in her heart and a restriction in her aorta that was called a coarctation of the aorta.  I was stunned and full of fear as I hung up the phone.  I called Brett at work to tell him about Hope.  I was crying uncontrollably.  He told me that everything was going to be ok and he was right.  If you don’t know the rest of the story you can read it here.

The girls were 11 days old when I got to hold both of them at the same time.

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On April 15th we got to take Mikayla home.  Taylor and Brynna met her for the first time in the hospital lobby.

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Mikayla came home when she was 17 days old

After Mikayla came home, Hope decided to listen to what Daddy had told her to do in his little pep talk.  She started taking her bottle and was eating like crazy.  Hope got to come home 4 days after Mikayla.  It was an exciting day when we had both of our girls home.

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Hope was 3 weeks old when she came home

This is the picture we used for the girls birth announcement.

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Here are a couple of my favorite pictures of the girls

5 months old

5 months old

 

9 months old

9 months old

And now those helpless babies are 10 years old and I can’t keep up with them.   Happy Birthday to our Two Upside Down  Turtles!

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Happy 10th Birthday Hope & Mikayla

 

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What’s Wrong With My Brain?

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Mikayla & Hope have speech therapy every Monday at 2:00.  Hope and her therapist had already started their session.  Mikayla was quietly waiting for her therapist to come and get her.  It was 2:05 and she still hadn’t come. She must be running behind schedule. 2:10 and she still hadn’t come.  That’s strange. She’s never been this late before.  At 2:15 the light bulb inside of my brain went off.  I remembered that the therapist told me last week that she would be away for training and wouldn’t be able to see Mikayla this week.  She even gave me a paper to remind me that she would be out.  The paper disappeared inside of my purse and I completely forgot we had even had the conversation.  What is wrong with me?

I received an email last week from Taylor’s violin teacher.  She said that Taylor had missed her violin lesson. What?  You’ve got to be kidding me!  Taylor has a lesson every other week.  I was positive that she had went to a lesson the previous week.  A quick look at my checkbook proved that I was wrong.  It had been two weeks since we paid for a violin lesson.

I paid a bill online.  They said I hadn’t paid it. Yes I did!  I’ve got the paper to prove it! It’s right here in my extremely organized file system.  15 seconds later it was in my hands.  I couldn’t find a confirmation number anywhere on that paper.  But it clearly said “please press final authorization to complete your payment”.   What?  I didn’t hit the final button to make the payment? Really?  Someone must have been screaming for toilet paper and I just thought I hit the authorize button before I ran to save the day.  We had to pay a finance charge of $1. At least I made the mistake on a bill that was $12.

I get so frustrated when I do these things.  I’m a perfectionist.  I’m “a place for everything and everything in its place” type of gal.  I despise paying late fees.  I’m embarrassed because Taylor’s violin teacher was waiting and wondering where she was.  I used to work in a doctor’s office.  People who didn’t show up for their appointment and didn’t bother to call annoyed me.  And now I’m one of those people. Great.

I want to be that young 20-year-old girl that I used to be.  She could remember everything.  She wouldn’t have forgotten that the therapist wasn’t going to be there. She never forgot an appointment and she was always 15 minutes early.  She paid every bill on time.  Her house was clean and dust free.  What happened to that girl?

Our two turtles keep me up until 11:00 or even midnight some nights.  Last week Mikayla woke me up at 4 a.m. to say “I love you, Mommy!”  I sometimes don’t get enough sleep because the girls keep me up.  And sometimes I can’t sleep because my brain that doesn’t seem to work during the day goes into overtime at night.

What should we do about this?

What should we do about that?

Maybe we should take the girls somewhere for behavior therapy?  Wonder how much that will cost?

Which night this week will I have time to wrap the girls birthday presents?

I’ve got to get those homeschool books ordered.  The free shipping code expires in a few days.

I’ve got to remember to buy some white sandals for the girls to wear with their Easter dresses.

Did I pay the gas bill?  or is it still in my purse?

Is there anything that we can do to teach the girls to not talk so loudly?  I need to google that.

If there isn’t anything that we can do about them talking so loud, I need to remember to buy some ear plugs. 

I’ve got to remind Brett to pick up the prescriptions on his way to work.

I need to call and make an appointment for Taylor to get her bridesmaid dress altered.

Brynna’s tap shoes are too small.  I need to ask her teacher to order some for her.  The recital is coming up.  I’ve got to remember to do that.

What should we do for Taylor’s high school graduation?

Ok.  Now I know what happened to that young 20-year-old girl.  She turned into a 43-year-old exhausted mother of four.   That 20-year-old girl had a spotless house because she had all the time in the world to keep it clean.   She didn’t have little girls who liked to make messes. She never made mistakes paying the bills because no one ever screamed for toilet paper.  She never forgot an appointment because she rarely had an appointment.  She wasn’t thinking about therapies, violin lessons, tap shoes, prescriptions, graduation, or a bridesmaid dress.  Life was so simple.

But you know what?  When life was simple no one called me Mom.  I’m glad that I traded in my simple life for a new name.   Now that I’ve changed my name to Mom I get to go to violin and dance recitals.  I get to buy birthday presents and tap shoes and white sandals.  This spring I will get to see Taylor graduate from high school and be a bridesmaid for the first time.   And I get to wake up in the middle of the night and hear a little voice say “I love you Mommy”.

I sometimes still feel like I’m that 20-year-old girl.   Sometimes the checkbook balances on the first try and no one screams for toilet paper.  I love those days.  Last week I dusted and vacuumed the living room on the same day.  I was on cloud nine.  Taylor made it to her violin lesson this week.   I even remembered to add extra to the check for the new books that her teacher gave her.  The girls had appointments for shots and we showed up 20 minutes early. Yes we did.   My sister works at the health office and she is my witness.  It really did happen.  I forgot to tell Brett to pick up the prescriptions and I need to remember to pay the gas bill that I found in my purse.  What’s wrong with my brain?  I don’t think there’s really anything wrong with my brain.  I think it’s just full of thinking about four girls who call me mom.

Could You Turn a Light on, PLEASE?

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A few months ago, I bought a lantern.  I was dusting the other day and I realized that I had never bought a flameless candle to put in it.  A lantern without a light?  That’s interesting.  I sometimes feel like a lantern without a light.  I feel as if I’m stumbling around in the dark trying to find a light switch that isn’t within my reach.

Last year I had 3 anxiety attacks.  I couldn’t get out of bed and I couldn’t stop crying.  Walking across the house took every ounce of strength that I had. Anxiety came when I started focusing on the darkness.  All I could think about was our girls uncertain futures.  The “what if’s” and “what do we do’s” were tormenting me.  I was focusing on their disorders, deficits, behavior problems, and everything that they can’t do.  And life became dark.

Since Brett works nights, we have dark shades on our bedroom windows so that the room will be dark while he sleeps during the day.  One afternoon I found myself lying on the bed crying.  And the room was dark.  Really dark.  Our bedroom was dark even though there was sunshine in every other room in the house.  I chose to be in the dark.  As I was having a really good cry thinking about how everything in life seemed dark, I remembered the scripture Micah 7:8. ~ When I sit in darkness, the Lord will be a light to me ~  

This verse says “when” I sit in darkness.  It doesn’t say “if” I sit in darkness.  We will all go through dark times.  It’s just part of living in this world.  But the promise of Micah 7:8 gives us hope.  When we are sitting in our darkness, the Lord will send us light.

I realized that I had to make a choice.  I had to start focusing on the light (Jesus) so that the darkness would disappear.  I had to stop hiding in the dark bedroom and start living in the rooms that had light.  I had to start celebrating the things that the girls can do and stop fixating on the things that they can’t do.  I had to stop worrying about the future and begin to focus only on today.  I still have bad days when I cry and eat chocolate.  But anxiety no longer knocks me off my feet and makes me hide in the darkness.

Light shows up when the girls do something that they have never done before. The girls used to hate to color.  I would try to get them to color and they would refuse.  This is what our living room looks like right now.

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There are over 100 pictures on our wall that the girls have colored.  Last Wednesday night Hope didn’t want to stop coloring to go to church.  And that girl loves to go to church.  Every picture is special and must go on the wall.  We’ve got a couple of crazy coloring girls on our hands and it makes me smile.

My mom fell and broke her shoulder a few weeks ago.  The first time Mikayla saw her she very sweetly said “Grandma….you be better for my birthday party?”  Her heart is tender towards her Grandma and it makes my heart smile.  Every night she asks to pray for Grandma to get better.  We pray for Grandma  right before we pray for our cat and gerbil.

Light came last week when we went to a doctor appointment.  We were sitting in the waiting room and Hope burped really loud.  I said “What do you say, Hope?”  She very sweetly said “Excuse me!”  Then she said at full volume “Mommy, mommy that was a really big one!”  And suddenly light and laughter filled the waiting room.  Oh, how I love my Hopey.

Light comes during bedtime prayers.  One night I asked the girls what we needed to pray for.  Hope said “For Kitty…she has a cold.” Then Mikayla said “For Perry….he has a cold too.”   I pray for stuffed animals to get over their colds and I have trouble not giggling while I’m praying.  The girls used to not have imaginations, but now they are developing imaginations.  And it’s wonderful.

I’m so thankful that light makes darkness disappear.  I’m thankful that a lantern can light our path…..if we just remember to put a candle in it.

 

 

Is that REALLY apple juice?

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We were at my parents house last Sunday and Hope asked her Daddy to get her some apple juice.  Brett went into the kitchen, fixed her a cup of apple juice, and brought it back to her.  Then the sparks started to fly.  She insisted it wasn’t apple juice.  He told her that it was apple juice.  She kept insisting that it wasn’t apple juice.  Maybe I can reason with her.  I told her it was apple juice.  No it isn’t.  Yes it is.  No it isn’t.  Yes it is.  Ok.  This isn’t working.

I wish I could get inside of her head during moments like this.  Why does she think that it isn’t apple juice?  Is it because it’s in a cup that she can’t see through?  Is it because it’s a purple cup and she thinks that there is grape juice hiding inside?

I told her that if she would taste it she would find out that it was apple juice.  She refused.   I asked her again to try it.  She was very irritated but she took a sip so that she could prove once and for all that it was not apple juice.  She suddenly had a very puzzled expression on her face.  Then she looked up at me and she said “It’s apple juice?”  The room filled with laughter.

The apple juice incident made me think about Matthew 7:9-11.  Which of you, if his son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake?  If you, then though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!   

Hope’s Daddy wants to give her good gifts.  She asked for apple juice and he gave her apple juice.  But when the apple juice looked different from what she expected it to look like, she didn’t want it. Don’t we all do that at times in our life? We pray for something and God answers. But when the answer doesn’t look like we expected it to look we get upset.

Life with our two turtles doesn’t look like I expected it to look.  When I held our newborn babies, I thought life would be exactly like it had always been. We would just be living life with twice as many children.  I didn’t picture meltdowns, sensory overloads, and disorders being a part of our life.  But they are.

If Hope asks her Daddy for a glass of Mountain Dew the answer will be no.  Hope and caffeine should never be mixed together.  It will cause an explosion.  Sometimes we ask God for something and He says no.  We can’t understand why He says no, but He sees the explosion that is going to happen if He says yes.  His ways are higher than our ways.  Why did He choose for us to be the parents of special needs kids?  I have no idea.  But I know that His gifts are good even when they come in a different package than we were expecting.

A Lit Match, Gasoline, and an Explosion in the Bathroom

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What happens when you light a match and throw it on gasoline?  Come with me for a moment and I will tell you all about it.

We decided to leave home early and stop at Party City before the girls had therapy at Easter Seals.  The excitement of buying Olaf paraphernalia for their upcoming birthday party made the girls start talking at full volume.   I always enjoy standing in a check out line while our girls talk loud enough to be heard in the next county.  We survived Party City.  So why not go to Toys R Us?  We needed some ideas of what to get them for their birthday.  The second our feet entered the door they started talking at full volume.  They talked at full volume for 30 minutes.  My ears hurt.  My head was pounding. We left with one idea for a birthday present.  It was time well spent.

As we drove to Easter Seals, I swallowed an aspirin while I rubbed my left temple.  This is going to be a really long day.  Brett dropped us off and I gave him instructions to return with chocolate.  I watched as the girls walked down the hallway with their occupational therapists.  Sweet freedom.  45 minutes to spend with my book.  I might have enjoyed it if my head hadn’t been pounding.  That 45 minutes passed much too quickly.  I slowly walked up the hallway to gather my two firecrackers.

We had a 15 minute wait until speech therapy started.  I took the girls to the bathroom.  Turtle #1 started talking.  Turtle #2 didn’t want Turtle #1 to talk.  The match was lit.  So what are you supposed to do when your sister starts talking and you’re not in the mood to listen to her?  You kick her as hard as you possibly can.  Yep.  That’s what you should do.  Throw the lit match on gasoline.  BOOM!  And there’s the explosion.

Turtle #1 got really mad and started yelling and hitting Turtle #2.  And then Turtle #2 started yelling and hitting Turtle #1.  Ok.  What do I do now?  I told them to stop it.  That’s about as smart as telling a fire to quit burning.  So I did what any sane mom would do in that exact moment.  I decided that we were going to hide in the bathroom for the next 10 minutes.  I was hoping that no one would witness our explosion.

And then the door started to open.  Great.  There’s nothing that I love better than a complete stranger getting to watch our girls in action.  Oh joy.

She smiled as she came through the door.  Wait.  I know her.  She’s the speech therapist who saw Hope a few months ago when Hope’s therapist was sick.  I told her that the girls were having some behavioral issues and we would be hiding for the next 8 minutes until time to go to speech therapy.  She laughed and said “I understand”.

I hear those two words often.  A mom tells me “I understand” and it sends me over the edge.  She doesn’t have a child with a disability.  How can she understand?   Her child doesn’t have meltdowns and behavioral challenges in public?  She can’t really understand.  She just says she understands because she doesn’t want me to feel so alone.  But it doesn’t really help.  It just makes me feel worse.

But this lady was different.  When she said “I understand”,  I knew that she understood.  I saw it in her eyes.  She began to share about her son and the behavioral challenges they had endured together.  Then she said “I wouldn’t wish those kind of problems on anyone.  But when I see other parents dealing with the same problems, I can’t help but smile.  Because it’s nice to know that I’m not the only one.”

As we exited the bathroom, I told her about our sensory overload at Toys R Us.  She understood every word that I said.  She shared a few things she’s learned about taking her son into public places.  I understood every word that she said.  As we neared her therapy room, she smiled and said “We’ll talk again.”  I told her I looked forward to it.

Little Miss Fire went to her therapy room and Little Miss Gasoline went to her therapy room.  The explosion died for the next 30 minutes.  I sat in the parent’s lounge and listened to my head pound   Therapy ended and the fire and the gasoline had to meet once again.  The hour and 15 minute ride home was filled with screaming and arguing.  There were two reasons that I survived.  Brett had returned with chocolate and a cup of caffeine.  I sure love that man.

It was one of my worst days.  We were hiding in the bathroom and I was hoping that no one would find us.  It was one of my best days.  We were hiding in the bathroom and someone found us.  My mess made her smile.  And her mess made me smile.  Most of the time I just want my mess to go away.  But today what I needed more than anything was to know that someone else has a mess that looks exactly like mine.  I’m not alone.

The next time I’m hiding in the bathroom, I will remember this day.  I will remember that I’m not the only mom sitting in the middle of a mess.  Or perhaps I will be the lady on the other side of the door.  As I push the door open, I will smile.  I will say I understand and the other mom will see it in my eyes and she will know that it’s true.  We’ll smile at each others messes.  And we’ll find that our broken worlds don’t seem quite as broken when we realize that we are not alone.