August 30th, 2010

*waving hands wildly*

“Stop!  Stop everything!  This isn’t working!”

We had a plan for schooling, but we weren’t prepared to implement it, and that is a sure way to fail.

During this past week, I was not able to prepare for school and oversee the schooling process simultaneously, with the other pressures and demands on me.

We are still in crisis mode.  In addition to needing my hands and eyes to be fully focused on Verity for half my waking hours in order to teach her to eat, I was spending hours pursuing help to know how to teach her, with no success.  She was slowly regressing and needed skilled intervention.  I had been warned that without skilled intervention now, that these feeding issues could take months, if not years, to be corrected.  I heard stories of other children who still had G-tubes (surgically placed directly into the stomach) at two, or six, or nine years of age.

I was having trouble fitting six feedings into each day, and Verity should be getting seven.

Having divided attention (i.e. trying to prop the bottle with Verity on one arm, and trying to accomplish tasks with the other arm, with the bottle constantly sliding down and needing to be re-propped) was also contributing to her taking less and less by mouth.  I have needed to go back to fully supporting her cheeks and jaw when she drinks.  With my other arm, I hold her in an upright position, firmly holding her arms and legs straight and still.

Even the tube feed takes two hands now, because the portholes are loosening, so I have to hold the connection together with one hand when squeezing the syringe with my other hand, to prevent it from leaking or becoming disconnected.  We’re waiting to hear if we need a prescription for extensions for her tube.  We know God will provide for that expense!

I have one hand free when pumping, and that’s often when I eat, or type.  But I am unavailable to the children during this time.

On Friday afternoon, we asked Dr. Chowdhury’s nurse about the possibility of renting a feeding pump to put calories into Verity during the night while she sleeps.  This would give us room during the day to allow her to take less and spread her feedings out, to help her feel hungry at eating time, without causing her to lose weight.  Dr. Chowdhury okayed that plan.  Joe drove 45 minutes to the only medical supply place he found that had Saturday hours, only to have them tell him that we needed a doctor’s prescription.  That had to wait until today, so now we are waiting while those logistics are worked out.  The feeding pump is $140 per month, and the feeding bags are $256 for a month’s supply.  We know God will provide for those, too!

On Friday evening, the upper end of Verity’s incision began to ooze and the skin around it was inflamed.  She has an appointment at the Clinic for this afternoon at three.  Yes, God will provide for that as well!

The final blow was learning on Saturday that despite the blood, sweat and tears of the past two months, I had possibly been contributing the whole time to her current feeding issues.

I needed to be reminded that God had all this timing under His control.  If He decided to withhold information, He had done it for His own good purpose, and I must rest in the knowledge of that goodness.  I struggled to do that rather than regret and second-guess.

By Sunday, I was either in tears or on the verge of tears constantly.  Despite doubling my pumping time, my milk supply was dropping off fast.

I had to tell myself that God knows what pain I need to go through right now.  He may choose not to lift it because He knows what branches of SELF need to be lopped off.  And that lopping-off HURTS.  And when I weep, that doesn’t mean that I am a rebel, that means that I am a hurting human.  I can hurt, and at the same time know for sure that a loving Father sometimes needs to cause pain.  I know that this is proof that He truly loves me.  He will not turn His back on me and say that I’m not worth the trouble.

The Lord sent some encouragers to me yesterday.  One came to keep me company and offer hugs.  One came to visit and offer understanding encouragement from her own experience.  Her nine year old daughter with Down syndrome went through tough times as a baby, too, and showed us all how wonderfully she is thriving in her family now. The third encourager wrote to me–

“I want to give you hope–Verity does not have to be stuck with tube feeds–she can, and will, learn to eat–she will get stronger, and she will master these skills–REALLY–she will!  We aren’t going to wait for her to figure it out though.  We’re going to put her to work.”

She gave me an hour and a half’s worth of a listening ear on the phone last night, specific reassurance, and the first few steps of a plan.  Thank you from the bottom of my heart to my sisters in Christ for the time you spent ministering to me yesterday in my time of need!

A thoughtful friend stopped in with a meal on Saturday, not knowing what a burden that would lift for us right now.  Thank you, friend, for going out of your way to help us!

Joe and I finally had some time last night to talk, and talk we did, into the wee hours of the morning.  I laid the situation out before him, and appealed to him to reconsider his decision to start school now.  I asked for more flex time to get fully prepared.  He could see that something had to give, and agreed to lift that added responsibility for the time being.  He didn’t lift my responsibility to continue blogging.

We are now taking whatever unpressured time we need to prepare for the new school year!

*Deep cleansing breath*

This morning, I made a list of the dozen or so tasks that need to be accomplished before we start back up, and called the children together to explain the new game plan.

I know that some of you have continued to pray for us, and we want you to know that we highly value those prayers during this stretch of the journey.  God is using you in our lives.  Even when I can’t manage to update you!

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9 Responses to “<cut>”

  1. cindy says:

    thoughts and prayers are and will be with you.  as many of us start our school year may we lift you all up in prayer as GOD WILL SUPPLY ALL YOUR NEEDS!!!!!!!!!!  May you sense His arms around you as you ‘walk and don’t faint, run and not get weary’ 

  2. Joan Crick says:

    It is a wonder how you are continuing to function with the amount of pressure that has been on you for so long and with so little sleep! We know that God is faithful and is carrying you right now, but I’m sure it’s a very trying time. I guess God knew you would need your blog following to help encourage you during this time! I think of you and pray for you often and hope that Verity’s feeding difficulties begin to improve soon.
    By the way, thanks so much for the little package you sent. The hemp doublers are working great! :)

  3. Joy Horton says:

    ((((((((((((hugs)))))))))))) You are always in our hearts, thoughts, and prayers – you and Verity and your whole family. Thank you for the update. Peace and grace and rest to you, dear Susanna.

  4. Sandie says:

    Hugs and prayers, Susanna.  It is not an easy part of the journey you are currently on.  Just keep in mind that it is just a section of the path, not the entire journey.  May you feel God’s grace and mercy being poured out on you and your family.

  5. Ilisa says:

    I am praying for all of you.  I agree, you will all get through this.  There is another side.  In the meantime, I pray for your peace.  The serenity prayer helps me often.  Please do not beat yourself up for complications you have now.  You do not know exactly what things would look like if it weren’t for this or that.  You are doing the best you can and giving Verity a wonderful dose of love.  That is what she needs most!

  6. Marilyn Osborn says:

    I was behind on checking in….I’m so sorry things are so challenging right now. I know that the Lord is using ALL of it for good. Prayers!

  7. Will continue to pray!!  Thanks for the update and for being so open, we then know how to pray.  (((hugs)))

  8. Jasmine says:

    I’m so happy for you and mommy.  ;-) xox

  9. Tami Swaim says:

    Us Swaimers won’t be starting until September 6th LORD WILLING!  This mommy is having a hard time preparing.  What to do with a new walker, non talking toddler while schooling a child with special needs in the important ‘basics’ …two in third and one in sixth???? Hmmmm…I’ve got my work cut out for me but like a really, really, REALLY wise lady recently said to me *Quote~  “I can’t think of any other job that I would rather be doing!”  Wink…wink….

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