13th Birthday

I had such big plans for the 13th birthday post.  I'm still working on some of it, but I'm mostly just wondering why I still try to make it the way I want it to be. 

I didn't even see Abby on her birthday and Emily was in the hospital way too sick to care.  It was more than 3 weeks ago and I still haven't made them a cake or opened a gift with them.  It doesn't seem right to celebrate our children without both Jeff and I here.  So like their actual birthday, we will do our celebrating when we're all home together.

 

2 little babies, 1 scared mommy

I spoke with my sweet NICU friend this week; we both had premature, identical twin girls 2 days apart.  We stood at the sink near the entrance to the place neither of us wanted to be and washed away the outside world day after day, week after week.  We'd talk about our babies and watch each other as we began to understand that our lives were changing in ways we couldn't yet imagine.

"I thought they said this was going to get easier" my friend reminded me during our conversation. "They DID say that!" I replied.
It really doesn't. If you are a parent of a child younger than mine, I am so very sorry that it doesn't get easier. You get better at it, if that helps.

My friend and I decided that "it gets easier" is a lie they tell parents so we won't leave our children on the doorstep of the neurologist that acted like a jerk or the nurse that wonders "what the big deal is".----(Just kidding ....sort of :)

Anyway, back to the point...we share the birthday week of our girls and the journey through the joy and struggles of living with disabilities.  We've shared a Mama's breaking heart and laughed until we cried more times than I can count. 

Four amazing princesses



In those first months we spoke often of how "big" it all was.  There was so much to face each day and so many decisions to be made.  Things we had to deal with that we definitely didn't want to, and times when we were completely lost.  New information came flying at us from all directions.  We quickly learned to dread Doctor's appointments as they were often the catalyst for more doctors and even more unwanted information.  We cried, grieved, laughed, and tried to dream new dreams. 

On this the 13th Birthday of our girls, I am stunned at how little has changed.  I still feel all of the same emotions as I did in the few first months of this life.  There are still problems to deal with, if anything it's harder because we know so well what is happening or what we will experience in certain situations.  We also understand fragility in a way that could not have made sense to me then.  Even with those tiny NICU babies, I could not have understood how fragile my children could be.  I know now how quickly things can change.

Holding little tiny Emily and Abby, I was so afraid of losing the babies I dreamed of.  Sadly, I did lose them.  There are lots of new babies at our church now, tiny ones that are beginning to sit up and grasp toys; they can do what my girls can't.  Toddlers saying such sweet new words and phrases that make me smile.  In all the joy I feel for their accomplishments, I've never been able to completely ignore the sting of loss that comes with it.  Every word a precious toddler speaks is a word I've never heard from my child.  It's not envy or even pride that fuels this hurt, it's just sadness for my sweet girls.  

Even as the dreams of my children died, something new was born.  New lives and experiences began to grow even as our old life faded. There are times, places, and moments when I look at the scenery of my life, knowing how desperately I didn't want to live here and think "Thank you.  Thank you, Lord"  If I had my way I would have walked through this cold, lonely world that holds so many things that I thought I wanted.  Then I have a conversation with a 13 year old with only 5 words and know in my soul that I could have missed this incredible minute of life.  I could have missed her laughing or that feeling of such overwhelming love that my eyes fill with tears.  I could have missed the trust I have in a plan greater than my own. 




Emily and Nola

Abby Bowling



Even though the world didn't change and it didn't stop spinning for my broken heart, I still appreciate the life I've had the opportunity to live, and I am so proud and thankful for these 13 year old girls! 

Talkin' about Heaven

Since the day the twins were born, questions about their lives and deaths have entered my mind.  I don't want such thoughts there, but they are.  Nothing is less natural than considering the death of my child.  I know that all of our days are numbered and I may never have to live through losing my daughters, but it would be unwise to think it couldn't happen. 

The events of the last few weeks have brought it to the forefront again.  Emily was so very sick.  I wish I could describe what it felt like to hold her, not just her physical appearance, but the way her little body felt in my arms.  So small, so far from herself.  She just felt "away" from me, and falling further away by the minute.

Even though it seemed distant and hypothetical, I have talked with all of my children about Heaven before.  Emily and Abby more than Hannah and Sarah for obvious reasons.  It's a journey I can't take them on.  I don't get to go and see that they are alright.  When I think about the possibility of death, my greatest concern is that they would be afraid.  What if they are scared or feel alone?

After such a scare with Em,  I feel the need for a more concrete coversation with them. 

What exactly is Heaven?

I tell my girls that it's a wonderful place where God lives.  In heaven there is no sickness.  You will be able to walk and talk.  You can run and sing.  You will never have pain or feel hunger.  It will only seem like a moment to you before Mommy and Daddy are there.  If you ever feel like it's time to go, don't be afraid.  Run to Jesus.  I want so badly for you  to be here with me, but more than that, my prayer for you has always been that you would be free from pain and free from wheelchairs.  My prayer is that you are never, ever afraid. 

I want to prepare them in a way that I can not even prepare myself.  Kid just rock, right?!  I'm crying just writing the words, but children are wonderful at cutting to the heart of the matter.

In my talk with Sarah and Emily, as I'm describing the wonders of Heaven as I see it, I start asking Emily questions. 

Me:  Will there be throw up in Heaven?  (strange question--I know, but Emily has a personal vendetta against puke.  Throw up or sour cream in heaven would be a deal breaker for her)

"Uh-uh" Emily replies, quickly followed by "ewww".  

Me:  That's right Em, no ewww in Heaven.

Sarah pipes in with "maybe you shouldn't be talking about this is front of Emily". 

mmmm, interesting.  What's she worried about? I wonder to myself.

Me: Why not?

Sarah:  Because if there's no throw up in heaven she'll definitely want to live there and she lives here with us.

Emily laughs out loud at that funny thought.

Ahhhh, my precious girl doesn't want to lose a sister.  I understand Sarah, I don't want to lose her either. 

Me:  What about her wheelchair?  It would be great for her to not need that. 

Emily:  Uh-uh (loudly)

Me:  You want your chair with you in Heaven? I ask, completely shocked. 

Emily:  Yeah.

Me:  But Em, you'll be able to walk, you won't need it baby.

Emily:  Uh-uh. 

She wants it, she can't even imagine what it's like to not need it.  It's not a part of healing to her, it's just a part of her.  Could I love her more than I do at this moment?

Me:  What else should be there with you?  (I'm laying in bed with her next to her face which prompts the next question)  How about your toothbrush? You sure need it here.  Do you need that there?

Emily:  Uh-uh. 

Giggles from both of them.  That's enough for tonight.  End with giggling about Heaven and toothbrushes.

She can imagine not needing to brush her teeth and decided food wasn't necessary there, but her chair is.  She looks through such sweet child eyes and lets me see too.

My conversation  made me think about God and what I see as  healing.  Do I limit God to my ideas of what I need?  Emily can't imagine not needing her wheelchair; if I'm honest, I can't imagine it either.  I'm so busy maintaining the status quo that I never open my mind to the infinite possibility that is God. 

As I think about my children and our lives, deaths, and the moments in between I am amazed at God's unfailing love, especially in times when I feel so lost or afraid.  The child He gave to me, that one day He may very well take back, teaches me everyday.  Using her only 5 words she shows me that Heaven is beyond anything I can show her. 

"For our dying bodies must be transformed into bodies that will never die; our mortal bodies must be transformed into immortal bodies. Then, when our dying bodies have been transformed into bodies that will never die..."  1 Corinthians 15:53-54

Quick Emily Update:

I hope this is my last Flu 2011 update.

I was on target about Emily.  She does have bronchitis (but the lungs sounded clear).  She also has an infected toe, and her G-tube had some bleeding last night.  That's a strange symptom that I don't see very often.  She probably pulled it at some point, but in any case it's red and irritated now. 

All of those things together add up to a 10 day course of antibiotics. 

As far as the extreme weakness goes, he reminded me of what she's been through and said it would be at least a month before she was back to herself.  What's strange is trying to remember what back to herself is.  Is it Emily before she was having so many seizures?  Or was that Emily when she having seizures I didn't know about?

My Emily is funny and smart.  She loves school and jokes.  She thinks boys are cute and puke is ewww.  She loves her dog and her sisters and plays made up games with complicated (and sometimes gory) rules. 

I find myself staring at her now to see if her eyes are focused and alert.  I watch her body language for signs of illness.  I feel her head, and listen to her chest with the stethoscope that is draped across her bed next to her favorite stuffed ferret, Leah.  She is becoming a watched child instead my funny girl. 

My watched child did get cleared to go back to school on Monday for 1/2 days until she is able to build her strength up. Then she can go full time again.  So much better than last time she had the flu when she missed 4 months.

It amazes me that one week ago she was in the hospital after one of the most terrifying days of my life.  When I carried her into that ER, I absolutely KNEW without a doubt that I was holding a child who would die without help--I'm not sure I've ever felt that before.  Feared it, yes.  Known it, no.  She had nearly 105. fever, her heart rate was 150, her blood pressure 90/47.  She was barely opening her eyes and unable to keep any fluids down.  She would have made it another day, maybe two without intervention. 

I'm not being morbid there.  I'm being grateful.  As I drove to the hospital, I couldn't help but feel overwhelmingly grateful-even through the fear--that a 20 minute drive to the hospital, an IV, antibiotics and lots of rest and my daughter would probably be alright.  Then I thought of the countless mamas around the world who hold their sick and dying children with no where to go. 

I'm praying for God's peace in the heavily burdened hearts of those mamas tonight.  I pray he surrounds them with comfort that pours out like rain.  It would truly be a peace that I do not understand because I can't fathom holding Emily so sick and feeling peace in my heart.  I pray that if I ever am, I experience the true depth of His Grace. 

"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."   John 14:27 (NIV)

How's Emily?

Quick answer:  not sure.

She's home from the hospital and doing alright.  I brought a fairly sick little girl home, but she is improving (I think) although very, very slowly. 

Emily before she left the hospital

She's so weak.  It's hard to see her like that.  I keep calling her Granny.  She thinks it's funny. 

Come on Granny, time to eat.  Let's go take a walk, Granny.  Her little cackle fills the space where the breath I'm holding should be. 

She reminds me of a tiny fragile Grandma.  She has so little strength.  She can be up 1-2 hours and then she exhausted.  She falls asleep, wakes, and we're up again.  She's coughing all the time and today she started running a low grade fever again.  She goes to the doctor tomorrow, so I'll be thankful for a few minutes when I'm not the only one staring at her.  Hopefully it's just going to take time for her to get past all of this. 

Abby's still healthy.  Thank God she hasn't shown any signs of being sick.  Her being in school has been a blessing as Emily has really needed me.

Jeff was able to come home, which was great for Abby, but not an easy visit.  It was stressful with so much going on. 

Over all, I'm tired, concerned, and hopeful.  I'm hoping my girls stay out of the hospital and things settle in to our normal before we have to uproot for a HUGE move. 

I guess I'll just wait and see what tomorrow brings :)