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. 

Ground Hog Day

Since I am trying to write daily, just for one month I am acutely aware of the reason I do not write daily.  I'm living Ground Hog day. It's basically the same over and over. 

I wanted to do this for me.  I thought if I could look at my life day by day, I would understand more about myself and what I'm filling my life with.  It turns out it's mostly laundry.  Boring, huh? 

Emily and Sarah went back to school, and I gave Abby a shower this morning.  She absolutely hates the shower.  I don't know why, and I don't know how to make it any better for her.  We've struggled with this for most of her life.  She has never liked it.  We do it because we have to, but none of us look forward to it. 

As usual, she started screaming her head off the minute she realized what was up.  My only goal was to not get horribly frustrated with her.  I prayed, then stuffed my ears with toilet paper and calmly gave her a shower.   It turns out that without being able to hear her quite so loudly, I stayed very calm.  I didn't speak to her or try to talk her out of a fit, I just let her go and did what I needed to do.  Without me to trying to reason with a howler monkey (aka: Abby), she just stopped.  She gave up the fight in the middle of the shower.  Who knew?

I changed the dressing on the Broviac which looked remarkably good, and then she and I went on to have an uneventful day. 

She is complaining of hip pain lately.  I guess she needs an x-ray, but I don't want to deal with an ortho doctor right now.  Kids with CP often have hip problems.  We have been blessed to not have major issues there, but that doesn't mean it won't happen.  If she keeps complaining, I'll have to do something.  Obviously, I'm hoping she doesn't keep complaining. 

That's pretty much my ground hog day.  Tomorrow I will have more laundry to do.  Abby will be taken care of.  The girls will go to school, and like every other day I will do all I can to trust God in a situation that makes no sense to me. 

Baby tooth

It was a baby tooth.  Thank God.

They pulled it and thank you Jesus that's one thing that won't be a problem.  I am so relieved.  I really thought that was a permanent tooth, but it wasn't. 

Okay, now to move forward with my day :)

Crazy

aka:  Abby. 

That's what the kid has been today.  Crazy. 

I have no idea what in the world is going on in that little girls brain, but oh my gosh.  I am ready to tie myself to some railroad tracks.  It has to be quieter than this house. 

She has fussed and cried all day over everything.  It's time to eat. Abby cries.  Let's work on taking Christmas down.  Abby cries.  Let's do laundry.  Abby cries.  Let's just sit in the chair and rock a while.  Abby cries. 

I am not a saint and all this crying is driving me crazy.  Admittedly, it's not a very long drive.  I end of feeling terrible because I want to feel sorry for her.  I am concerned some thing's wrong with her, but at the end of the day I mostly feel frustrated.    There are no nice words for days like this.  I don't feel good about any of it. 

Day's like today make me wonder where God is more than any other day.  I understand that people get sick.  I understand that bad things happen.  I don't understand this screaming child.  Why doesn't He help her?  Why doesn't He help me help her?

As I was writing the last paragraph, I stopped to check on her (crying again).  Her entire pacifier was stuck in her mouth.  I pulled it out, but there was blood in her mouth.  When we looked closely we noticed her tooth was cracked.  I called the Emergency room, but all they could do was treat for pain.  I gave her the max dose of Motrin and a little ativan and thankfully she fell asleep.  I'll have to find a dentist tomorrow.

Ugh!  All the frustration I felt from having a fussy child all day transferred to frustration over yet another problem to deal with.  I definitely feel bad for Abby.  On top of feeling bad all day, she's hurt now.  The poor girl just can't catch a break. 

I'm going to bed needing a better day tomorrow.  I was trying to commit to blogging every day in January.  If I was in my normal pattern, this day would have been a line or two in a post.  I wanted to keep it real, so there it is.  We'll see if writing every day is a good thing or not :/

2012

Finally.  We made it into a new year.  I'm not even a little bit sorry to say good bye to 2011. 

Difficult would be a kind word for our year.  Even though we carry all that happened last year to the new year with us, I am optimistic. I hope Abby would be able to return to school soon.  A few mornings a week would be great!  She doesn't have much energy, so I don't expect a lot.  We are only 6 weeks away from her being out of school for an entire year.  :(

I had a wonderful visit with my Florida BFF and her family.  It was great to spend the week after Christmas with her.  I needed it.  The girls did great and we had some fun!  Abby still struggles with too much activity, but we were able to take her out a few days.

We went bowling one day, which was a little sad for me.  It's Abby's favorite thing to do and she was so excited to go.  She didn't really have the energy to do what she normally does.  She usually walks in her walker and throws her little hand up to push the ball, but she couldn't do it.  She stayed in her wheelchair, quietly taking her turn and watching others take theirs.  I ached  for another loss in her life.  But even as I wished for her to be the way she was, I felt gratefulness. 

I was so thankful for every day I didn't feel like loading the walker in to the car, but did anyway.  I was thankful for each time the girls wanted to go bowling and I was way too tired, but I did it anyway.  I looked at her so tiny and pale last week and was so thankful  that we had given her what we could when she was able. 

Life is unpredictable.  Never in a million years could I have imagined what our life is now.  We lived each day.  Not because we were fearful of missing something, but simply because this is life and living is what we do with it.  It helps to have lived it as fully as possible.  Even though I'm sad that it's not the same, when she could do it, I didn't miss one single step in a bowling ally (profound---right?  lol).

So that's the attitude I hope I'm carrying in to 2012.  I will do all that I can, as much as I can and be grateful for what is.  I am going to try very hard to not feel so sad for what's gone and embrace what is.  We made it.  All six of us lived through the whole year.  I honestly wasn't sure that would be the case.  Now we can look forward to a better year.  No matter what it holds, at least we are all together. 

God is good and I can't wait to see where He leads our family this year.