Embracing Life & the Child with the Disease

It’s been a week and a day since I have blogged.  And soooo much has happened and a good bit of it has been hard or sad or just not fun. 

  • We’ve been battling lows.  Mostly during the school day.  I’m getting more calls than not that Ryan is low and shouldn’t walk home from school.  Thank God Ryan has an incredible angel nurse who is okay with getting Aaron out of the walker line and keeping the two of them in the office for about 20 minutes after school so I don’t have to wait in the car line.  We have changed basals and lunch ratio, but nothing seems to be working.
  • I was having coffee with a friend of mine and get a call from Jason, “Amy, do you have Ryan’s basals and pdm settings saved or printed anywhere?”  A moment of panic then followed.  Ryan dropped the pdm and it errored and said to call customer service.  The pdm is fine, but customer service instructed to reset it.  We didn’t lose our records/history, but the settings reset.  Thank God I was told to download the pdm every week!  All is okay . . . I think . . . wonder if that has anything to do with the lows???? Hm (with face twisted and lips puckered to the side). 
  • Ryan realized for the first time that his body produces NO INSULIN.  He’s heard that.  And he knows he takes insulin, but it’s like it clicked for the first time.  It was startling for me, but he took it all in stride.  (I have written a post about that but just haven’t posted yet, but will soon).

But that’s the highlights of d this week.  But what has caused the writer’s block or lack of energy to write are other things NOT related to d.  D has had to take a back seat . . . or at least been on autopilot.  And you know what I’ve found.  We have all survived and d has pretty much been under control, at least as under control as it ever is.  In the midst of a huge family change for the five of us, unnerving tests for one in our extended family in which we are still awaiting results and a tragic loss in a pre-term labor and delivery, d has seemed very minor.  It didn’t quit, didn’t go on vacation, pause or even take a nap.  But we dealt with more pressing issues this week than d. 

And you know what?  Ryan’s health didn’t suffer for it.  Based on the pdm, his average blood sugar this week is 149 (too many mild lows in there but still a good average).  He was still checked when he needed to be at night. We still checked automatically like we always do during the day, some days even more. Yesterday we checked his blood sugar 15 times, again, too many lows.  And any other time I would be frantic because I can’t get him adjusted.  But not this week.  D wasn’t #1. 

Me, Mel and Kammy-girl (there's an angel in this pic too, we just can't see her)

And today, above all the madness and trials of life that my family is dealing with and our families on both sides, my heart today, this week has been heaviest for Jason’s sister, her husband and her daughter.  I have prayed unceasingly for all three.  And my arms long to hug her, to cry while she cries on my shoulder, to sit in silence and just be there with her . . . physically be there . . . not be half a country away.  Words are never enough.  My presence would not take away any of the pain of her loss.  But I wish I was feeling helpless sitting on HER bed WITH HER.  But instead, I’m sitting on my bed 22 hours away holding my cell phone.  Oh, my heart is with you, Mel.  And I’m praying and loving you all the way, for as long as it takes, for a lifetime.  I miss you.  And I’m so, so sorry.

Heaven became sweeter on April 5, 2011.  Faith Ariel graced it with her presence.  And as Ethan said, I am sure “they’re all playing together.”  Faith, her two miscarried siblings already there and our four.  I take comfort in that.  And I’m praying, Melanie, that one day, you will be able to do the same.

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Comments on: "D in the Back Seat, Life in the Front" (8)

  1. I’m so so so sorry for your family’s heartbreaking loss. It’s been quite an emotional week here as well.

    Praying for peace and comfort all around.

  2. I am glad D behaved for you this week and I am sorry that the rest of the week was rough. Seems like there has been a lot of stuff going around the doc lately.

  3. HUGS! Prayers for your SIL and family.

    Okay universe… time to leave the DOC and it’s peeps ALONE!

  4. Oh Amy, I am so sorry. I didn’t realize this was happening. I think b/c I was in my own funk. Love to you and your family. I am thinking of you. You are a rock sistah…

  5. So sorry Amy, on 4/3 my friends baby joined Heaven as well. We have two more angels watching over us xoxo

  6. My heart goes out to your family.

    Much love to you and yours! Hope the lows ebb a bit soon!

  7. This comment is late, but heartfelt. I really feel for your SIL and for you and am sending some love and hugs your way! xo

  8. bmcalister said:

    So sorry to hear about Faith Ariel! We have been praying for you and the family. Hugs!

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