Isabel's update

After her fundo surgery

As I sit here wondering how to begin this entry, my thoughts are drifting back through eleven years of memories with Isabel.  The pregnancy, the fears, the c-section, the tiny cries, the waiting every day for her to live one more day and be one day stronger, the first time in her crib after starring at it empty for all those months, the first smiles, the laughs, the countless hospitalizations and the wonderings "is this it?", the multitude of appointments, the handful of specialists, the surgeries, the ups and the downs, the miracles, the prayers, the fears, the joys...

The first time Duane held Isabel... and I fell in love!

So much is wrapped around that young lady's existence.

I remember when I first met Duane, we would often sit on the couch in the living room of my tiny home and Isabel would be sitting in her tiny tumble form chair watching Finding Nemo or Shrek or one of her favourite movies.  Back then, she was so tiny and light that she could kick her legs and fling her arms around as she squealed with delight.  Always a hoot to watch her do that.

I distinctly remember sharing my heart's prayer with him that one night in particular.  "I have been asking God to prepare my heart to let her go when the time comes.  Because to imagine it grips so tightly around my heart that it makes it hard to breath.  I cannot imagine what my process would have to be for that anguish to be removed by loving acceptance... but I will need it to happen before she leaves this world."

As always, God has answered my prayer... and not in the way I imagined he would.

Since having more little ones, Duane has taken over as primary caregiver while I tend to the little ones so he is the one to oversee that meds are administered at 9:00 a.m. and 9:00 p.m., diapers are changed throughout the day, water administered via g-tube prior to feedings and pump feedings started on time, etc...  If he is not around, he delegates "okay mama, I am out in the fields today so you'll be looking after morning feed, meds and water."

Stepping back has weighed very heavily on my heart "Is Isabel paying a price in my having more children?  Or is this just a temporary stand-back while I have little ones to nurse?"  And sure enough, as I walk into her room to check in on her, there is Anika sitting next to her holding her hand again as they watch Isabel's movie together... as she has since she could crawl up to her chair.  Reassurance sets in and blankets that guilt as I watch Isabel younger siblings love her.  And to see her look at them and smile tells me this is not a "price to pay."

But still, the guilt is there when I remember how adamant I was with therapy stretches, one-on-one time and elaborate reports on any doctor's appointments.

And the other aspect of guilt comes from a sense of peace should God call her home.  Is a mother supposed to feel that way?  Why doesn't it clench at my heart like it did before?  Is that answered prayer?  Or a distant mother's indifference?  Even in typing those words, I don't think I could ever call it indifference... it will break my heart when that day comes but the fear of it does not cause a shortness of breath anymore.  Especially as I watch her get bigger and bigger, more physically challenged particularly where her scoliosis is concerned.

Her back is so curved on the one side that I wonder if her rough nights of crying are from the pain or from wanting to watch her movies!  These are bo-bos I cannot kiss better or make them go away.  These are hardships she has endured her whole life and they are only getting worse.

The latest health update has to do with her seizures.  For nearly a year now, we have noticed her twitching.  But because she is fully conscious during these twitches, we figured it was just a neurological twitch and no big deal... until this summer.

When we would sit on the veranda on Sabbath and pray over each of the kids, we especially noticed Isabel's twitching getting more drastic... from a mild facial twitch to a full body twitch.  I scheduled an appointment with pediatric neurology and sure enough these twitches are called Myoclonic Seizures.

I felt terrible that she had gone all this time without these seizures being treated!  The neurologist prescribed another anti-epileptic medication that would address these types of seizures and increased her current medication to address her Tonic Clonic seizures.  Now this was back in September already.  Poor Isabel ended up reacting to the first med they prescribed but has been doing rather well on the second one.  Her myoclonic seizures stopped altogether those first few weeks.

However, this past month, her seizure activity has greatly increased.  Where she used to have seizures every six to eight weeks, she has been having about three per week!  The neurologist suspects it is just because she is adjusting to a new medication but part of me is feeling afraid again.

I was warned eight years ago that we would be lucky if Isabel saw her teenage years.  She will be twelve this May but the healthiest she has ever been.  I honestly thought we could laugh in the face of that prediction... but here we are.  Back then, they warned that it would likely be one big final seizure which often occurs in the night.  As tears flowed down my face, she said that it would be important as her parents not to blame ourselves when we would find her the next morning.

How could you not blame yourself?  "If I had just checked in on her... if I had just slept in the same room... if... if... if..."

All of this could really only be an adjustment period to the new med but I would be lying to you if I said part of me thinks we are getting closer to that time.  I hope that I am wrong.  But in the end, I want what is best for our Isabel.  She has been such an amazing human being.  I celebrate the miracle she has been, the light she has brought, the love she has exuded... all that encompasses who she is.  My heart will break, but peace will also comfort me when that time comes as I imagine her free of pain, and finally in our Father's merciful presence.

I cannot help but think of all the abortions that happen out there when women find out there is something "wrong" with their fetus... and I think of what they have just robbed themselves of... I would have never, ever traded my time in with Isabel for anything in this world!  It has been one of the hardest aspects of my life but also the most blessed.  And those around her who fall in love... she has touched so many lives with her unconditional loving smile!  Despite her life of pain, I don't think she would trade her life in for anything either!

We continue to wrap her in prayer, in love and in hope that she live her life knowing these things.  And that each day be met with gratitude for having her with us.  May this find you living today to its fullest and embracing the gift of life that surrounds you.  We are all here for a purpose beyond anything you and I could ever imagine.  The less we fear pain, the more we can trust that good was always meant to be part of the picture.  And perhaps what is good would have never looked so beautiful to us if we had never known its absence.  Much love to you all out there.