Fourteen

Fourteen years ago today, I woke up knowing that something was wrong.  It was one of those unignorable feelings of dread.  I just knew that that was the day my life would change.  There was no way I could have imagined how significant that change would be. 

Emily Claire came screaming into the world at 2:30 pm by emergency c-section.  She was loud and looked so much better than I expected.  2 minutes later, Abigail Grace did the same.  They were puffy and remarkably stable.  We had expected such tiny little things at only 27 weeks gestation, but the steroids they had been giving me to help develop their lungs along with the fluids and other meds I was on went a long way in making those first few minutes better than we'd hoped. 

For a short time that day, we were thrilled and relieved to hear our beautiful babies crying and breathing on their own. 

I knew they were early and looking back, I should have been more concerned,   but I wasn't.  I was in love.  I felt overwhelmingly grateful that they were doing well and believed that they would be okay.  I thought that feeling I woke up with was my girls coming way too soon. 

I only saw them those first few minutes, and then on my way to my room, they took me in the stretcher by the NICU to see them.  By then both babies needed help breathing.  I still wasn't afraid.  I really thought they would be fine. 

I was so hopeful and so happy that they looked good.  I remember that day without fear. 

Even though that day was one that still makes me smile, it is also a reminder of how quickly things change.  It reminds me that one minute they were in me, safe and growing, and the next they were fighting for their lives.  They were survivors from the very beginning! 

I'm not trying to sound like it was all wonderful.  I still limp through every January as I am reminded of how far we are from where I hoped the girls would be.  It's hard to watch the years go by and see your children stay the same.  They have the exact same motor skills they had at 4 months old.  Their friends, babies we knew are moving on and we aren't. 

Even when they were little I was in tears buying their first birthday cake, knowing they would not be able to bring their hands to their mouths--God, in His infinite mercy knew I needed to see my babies having fun with their cake, so they stuck their faces in it instead.  I loved that moment.  I loved knowing that it might not be what I thought it would, but that they would enjoy the world in their own way.  It opened my heart to a different normal. 

Around that time, a therapist told me to get a book about raising a child with Cerebral Palsy.  I went out to the book store to do as I was told, but I couldn't buy it.  I couldn't walk past "What to expect the first year" filled with all of the developmental milestones I'd dreamed of and pick up a CP book.  So in what I considered a compromise, I bought a book called "Changed by a Child" by Barbara Gill.  It became my lifeline.  I still have it, wrinkled, written in, and worn out.   It was a series of short insights into this new life I was trying to figure out.  One mother wrote: " I had accept that I was not going to die from this, and my child is not dying today, so I had to learn to live".  Those simple words had a huge impact on my outlook. 

When it's all so scary and unknown, you wish you could just curl up and leave it all behind.  I wanted our lives back and I couldn't imagine living abundantly or joyfully with so much hurt.  Realizing that we all had to live--not survive--but live with what we had helped me to move forward.  It helped me to recognize the joy and the gifts that my girls were, and embrace who they would become. 

This year, I have my typical January blues, but it is certainly tempered with gratitude.  There were many days in the last year that I wondered what a birthday would feel like without both of my girls with us.  And the words of that book are still with me.  Even when I don't know what tomorrow will bring, as long as there is breath in our bodies we have to live. 

Thankfully I don't have to think about any of that today.  They are here and doing alright.  We are even having a birthday celebration for them on Sunday.  I was afraid to plan anything in case they got sick, but we are going to try.  It will just be family, but it should be fun and the girls will know how much we all love them.

So, fourteen years.  The story continues to unfold, and however it plays out, I am blessed to be be changed by a child. 

Love

Abby is feeling so much better.  I definitely think she was/is laying on the tube that delivers the medicine from the pump to her CSF when she's on her right side.  It pools the medicine and when she moves off of it she gets a larger dose.  It makes so much sense now that I understand what I'm looking for.  The higher dose is helping overall, and the fact that I understand when I lay her on her right side, over the course of an hour she begins to get stiffer and more uncomfortable. 

She needs to gain some weight.  I have a feeling that will go a long way in helping her.  A little weight gives the tube and the achy hips some cushion. 

I turned her over this morning after a good nights sleep and laid beside her.  She stretched her little arm and yawned.  That precious hand came around my neck so sweetly and her sleepy little voice asked "ma?".  That's her way of saying "what's going on?"  I told her about our day as she hugged me.  Then I turned on the food network and went in search of coffee. 

I left her room thinking 'I love her so much!!'  And I just spent a few minutes really enjoying her.  I felt my heart swell at the sweetness of the moment.  That is what I miss most of the time.  Simply loving her.  Fully and uncomplicated.

I always love her, but so often the feelings I'm most aware of are concern, fear, doubt, frustration, guilt, and exhaustion.  Almost always I look at her wondering if she's alright.  Wondering if I'm doing the right things.  Feeling terrible for not wanting to do anything.  Thinking about what she needs and what to do next.  Usually I'm so tired.  I rarely sleep uninterrupted and there are so few days when she feels well.

I forgot what it felt like to feel her hug me and talk to me without "ow" and a discussion of what's wrong today. 

I have to get back to her now, but feel so thankful to start my day with one sweet moment of purity.  One heart, for just a few minutes, filled with nothing but love.

Better?

The last two days have been a roller coaster. 

Abby slept some Tuesday night--not great--but sleep.  She woke up Wednesday with the same tightness and fussiness she'd been having.  I was really concerned about her Baclofen pump because I haven't seen her muscles so tight since the pump was put in. 

I made a series of phone calls trying to figure out what to do.  I was on the phone for more than an hour trying to find someone to evaluate the pump.  The Dr. who does the pump said that what we were seeing could be Baclofen withdrawal.  Suddenly stopping the medicine can be life threatening, so they called the neurosurgeon.  We got a call back a few minutes later telling us to come right in a be prepared to go to surgery. 

That was a panic moment.  About 15 minutes later as I was about to walk out the door, they called back and got more details of what was going on.  They decided the Ortho Dr. who does Baclofen should evaluate her first.  We ended up at her regular pediatricians office, who ordered all of the x-rays we needed.  We went for those and then went home for the night. 

We saw the ortho. today.  She didn't see any obvious kinks in the tubing, but she said it is very flexible and can be compressed.  I think Abby has gotten very thin, and her bony little hip might be pressing on the line when she's in bed.  That is entirely possible, so we are going to try to establish a pattern to see where the problem might be.  They removed all the medicine from the pump and put new in, just to be sure the medicine itself is good.  Then she gave her a bolus of Baclofen in case there was a little blockage in the tubing itself, the pressure of the quick medicine might be able to clear it.  We also increased her overall dose. 

I am hoping this helps her.  She really doesn't need a big surgery.  She's very thin, and those stiff muscles are burning calories she can not afford to lose. 

So far she is looser and seems more comfortable.  This has been a crazy-stressful week!  It's 8:30pm and the twins are fed and snuggled up in bed.  Hannah and Sarah are chillin' out, and as we all know, THAT is a huge blessing!  I have tons to do around here, but I'm going to relax and enjoy a few quiet minutes :)

I'm cautiously optimistic that Abby is either going to feel better with what we already did or we will be able to figure out where the tube could be compressing. 

Oh--and good news!  Her hips looked GREAT!

Whispers

"Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.  That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."  2 Corinthians 12:8-10 (niv)


Well, I doubt it's necessary to state the obvious, but I will anyway.  I only made it four days into my 'writing daily' goal.  I'm not going to beat myself up too much over it because I'm too tired.  That's one blessing of total exhaustion.  It takes a reasonable amount of energy to be really hard on yourself. 

The last few day's have been hard.  Really hard. 

I have struggled with myself, my kids, and my God.  I spent last week feeling lonely and very much alone.  They are not the same.  Lonely needs a friend, alone needs a spiritual pit stop.  Living with such intensity and responsibility had me struggling with God.  How could He think I am capable of this?  How could He think I would want this?  How could He ask me to watch my children go through so much.  It was as close as I've ever been to saying NO.  No, I don't want to do this.  I know you are bigger than everything I am or could ever dream of being, but I do not want to do this anymore.  Even if you ask me. 

Conversations like that with God take a toll on the whole person.  I felt tired and empty.  I wanted it to all go away.  I wanted to be like everyone else.  I wanted to go to church and not look for stairs or worry about access (Churches--We have got to do a better job of welcoming our disabled friends!).  I wanted to be able to just get up and go, but I couldn't.  I was frustrated that the Lord was so quiet in my heart lately. 

Then Abby got sick.  She started crying.  All the time.  Sunday, Sunday night (all night), Monday, Monday night (all night).  Screaming, out of control for hours at a time.  Yesterday her muscle tone changed drastically.  She was suddenly rigid and difficult to move.  We thought the Baclofen pump had failed.  Baclofen withdrawal can be very serious.  We got up this morning and took her to the ER.  By the time we got there she was completely different.  Floppy and lethargic.  They did a full work up and agreed that something was wrong, but they didn't know what. 

It could still be the pump because they were unable to interrogate it, so we have to follow up about that.  But the belly was normal for her, her hips were ok, the blood work, urine, throat and ears were all ok.  The only abnormality was a heart rate in the 140's (which it still is).  So why do I have an altered child?  The short answer is we still don't know.  The ER's best guess is seizures, or pain somewhere we haven't identified.  Jeff and I decided to bring her back home and see how she did.  She's still lethargic, so we don't know what to do. 

During all of this, Emily fell off her bed.  She knocked her front tooth loose, and of course it bled terribly.  She also has a bruise on her cheek.   I was immediately grateful that she wasn't seriously hurt.  I was also thankful that the tooth was still in, but it has some healing to do.  I'm praying it's okay.  It was scary because of her seizures and because of everything going on with Abby. 

So much.  So, so much.  As I was dealing with all of this, I thought about feeling so alone.  Can you imagine what it's like for people to deal with life without a belief in God?  I wondered what it would be like to be truly alone.  How would I have the strength to be typing on 3 hours sleep in the last 3 days?  I haven't slept more than 30 minutes straight since Saturday, Abby's still sick, everyone and everything needs something from me.  And suddenly I don't feel alone.  I know He is with me. 

I love that in our weakest moments, we see God so much clearer.  As C.S. Lewis says "God whispers to us in our pleasures, speaks to us in our conscience, but shouts in our pains:  It is His megaphone to rouse a deaf world". 

Abby's starting to cry again, so let's pray that just for tonight, God whispers to me in my sleep.