Only be still…and wait…

May 11th, 2012

“What can these anxious cares avail thee,
These never-ending groans and sighs?
What can it help, if thou bewail thee
O’er each dark moment as it flies?
Our cross and trials do but press
The heavier for our bitterness.” 

 

So after Monday’s triumphant success…

 

 


…after pulling Katie’s tube at the supper table on Monday evening, and after all the (silent) whoopings and hollerings had died away…

…came Tuesday.

A day that will surely live in infamy in my memory.

There is a cost to love.  And it doesn’t come cheap.

Katie took three hours to drink her eight ounces at breakfast time on Tuesday.  This is the eight ounces we formerly would have put through her tube.  You understand that the tube feedings did not take three hours!  And there were seven of us who could manage that task easily.

 

 

 

At the end of the three hours, she still needed to be fed her solid food.

By the end of this feeding marathon, both she and I were a sight to be seen.  Or preferably left unseen.

She needed to be cleaned up, taken to the toilet, dressed for the day.

 

See me have fun, get clean, and build my upper arm and body strength all at once!

 

 

All cleaned up so that we could start the process over again, this time with lunch.

Her lunch drink took two hours.

 

 

Are you picturing the scene?

The mom of a big, noisy, busy bunch sitting at the kitchen table for many hours.  Picture her with sticky hands, focusing intently on the even stickier girl on her lap.

 

 

 

Normally, sitting in the hub of our home like this, I would be fully able to direct operations.

But this was my third day without any voice at all.  Nothing more than a whisper would come out of my mouth.  The little ones were greatly amused at the result if I forgot I had no voice and tried to use it anyway.  “Croak, croak,” says Mama.

We had started out the week behind on cleaning and laundry, since we had just spent two days enjoying the company of friends, and not doing laundry or cleaning the house.  Since our laundry machines are slow, it took three days to do twenty-two small loads of laundry.

We’d strategically planned the Get-Katie-Off-The-Feeding-Tube campaign for a relatively clear week, but somehow ended up with a full schedule anyway, every day but Thursday.

And here I sat, immobilized and voiceless, with slimy hands to boot.

 

I’m learning that I can bring my hands to my mouth and get something yummy in my tummy.  That doesn’t happen if I put my hands into my hair like I’ve been doing for years.

 

 

 

 

 

When I got too excited and flapped my arms and couldn’t calm myself, my mama helped me settle down…


 

…so I could finish my meal.  I have a lot of trouble with hand-eye coordination, and my mama is thrilled when I look down at my food instead of off into space like I am doing here~

 

All that endless day, the hymn at the beginning of this post kept running through my mind.

“Our cross and trials do but press the heavier for our bitterness…”

And I couldn’t sing it out loud.

When Joe came home that evening, I tried to wipe the strained look from my face.  But he asked about the day.  “We cannot live like this,” I whispered, “This is an unsupportable plan!”

Supper was late that night.

After spending too much time trying unsuccessfully to fool Katie into thinking her eight ounces of Pediasure with purple smoothie was a tasty and desirable treat…

…and rather than capitulating and putting the tube back down, which I’m sorry to admit I was strongly tempted to do…

I thickened her drink to pudding consistency and added chocolate.

Yes, chocolate.

And fed it to her with a spoon.

That’s proof of desperation right there, but it worked.

She still took nearly an hour to eat it.

It was past nine pm by the time Katie was washed and in her clean jammies and snuggled into bed for the night.  Past nine pm by the time Joe and I sat down to eat our supper together.  It was date night, you see.

The next morning, as I conversed with the Lord while getting ready for the marathon ahead, He impressed on my mind that this was a test.

“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.”

Would I stand the test?  Would I groan bitterly under the pressure God had laid on me?  Or bear it with patience?  What would He see when He looked at my heart?  What would my children see when they looked at my face?  Would they see that God’s grace in the present was enough?

Is it enough?

Yes.  Yes, it is.

O Lord, give me what I need to bear this day cheerfully!  

 

That morning, Katie drank her eight ounces in half an hour.  And has done so every mealtime since.

By Wednesday night, the house was clean and tidy and we were caught up with the laundry.  We were finally ready to begin our week.

 

 

 

 

“Only be still, and wait His leisure
In cheerful hope, with heart content
To take whate’er thy Father’s pleasure
And all-deserving love hath sent;
Nor doubt our inmost wants are known
To Him who chose us for His own.”

 

 

 

[Note:  All the photos above were taken prior to the Day of Infamy!

You may have noticed that I was using the 7 oz. cut-out cup.  After that one attempt, I went back to the 4 oz. cup.

I have Katie sit up on my lap with proper posture in a supported position.  Katie thrusts her tongue forward as the cup approaches her mouth.  I use her maroon spoon to exert downward pressure on her tongue, which causes her to use her muscles to retract it, then I quickly replace the spoon with the lower rim of her cup.  This encourages her to tilt her head downward toward the cup and use the proper muscles while drinking.  All this muscle work should help her to grow stronger and more skilled as time goes by.

Also, I make up the girls’ six daily bottles the night before, adding the appropriate supplements to the appropriate bottles.  The bottles are marked on the bottoms with either “V” or “K,” and the lids with “B,” “L,” or “S,” for breakfast, lunch and supper.  Monday night, I added a purple smoothie to Katie’s Pediasure, hoping she’d approve of the flavor variation.  Unfortunately, she didn’t.  Tuesday night, at Joe’s urging, I went back to what had worked the day before–hazelnut creme decaf coffee.  A T21 mama told me decaf coffee had solved her daughter’s constipation issues.  Katie guzzles that hazelnut creme coffee-flavored Pediasure right down and no longer needs the Colace.  Thank you, G!

P. S.  Thank you to every understanding soul who prayed for me.  My voice is mostly back!]

 

 

 

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38 Responses to “Only be still…and wait…”

  1. Becky K. says:

    definitely never a dull moment with your family….but I am so thankful with you that our Father brings memorized scriptures to us just as we need them.  Sometimes I have to wonder how much more leadership and encouragement would be mine if I only knew more scripture.
    May God richly bless all of you as you continue on this journey.

  2. Joy says:

    You have taught me so much about what true Christian love looks like.  Thank you so much for sharing your life with such honesty and grace.  

    I LOVE the photos of Katie snuggling with you and smiling into your face! 

  3. Elizabeth in NC says:

    Go Katie and Mommy! Yes, both patience and perseverance are so evident!

  4. Stori says:

    Bless her beautiful little heart!  I do love her, and I am so thankful that God sent YOU to rescue her.  Please never stop sharing about sweet little Katie-Bird and thank you for pressing onward and not giving up on her!

  5. brenda says:

    Whew mama!!!! I never thought about all the muscles and coordination she wuold need to learn. You are doing a great job!!! And already–rewards!! 

  6. Jennifer says:

    My daughter has feeding issues – not nearly as severe as Katie’s.  It is the source of the most frustration for me. I don’t know why, but I can handle every delay she has except that one.  Thankfully, I have a wonderful group of therapists and an understanding husband to help.  I just KNOW how hard it is to handle feeding issues.  You did brilliantly, and you have the patience and perseverance to handle it.  Bless you, Susanna, for your strength!  Praise God for His goodness!

  7. Deanna Rabe says:

    I heard that she liked it with the decaf coffee!  Awesome!  So much change for her (good change, obviously) since she joined your family!
    God is good!

  8. CHRISTINE says:

    I keep looking at how great her hair looks! What a far cry from where it was a year ago!!

    So glad things are looking up…every day is a triumph!

    (((Hugs))) to your whole family!

  9. Sarah says:

    I agree 100% with Joy! Thankyou for being such a shining reflection of Jesus!

  10. I thought and prayed for you Monday and Tuesday!  It sounds like it was quite the marathon…  I admire you, may the Lord Jesus continue to be your strength and you are more definitely  reflecting Him.    ((((hugs))))

  11. Carolyn says:

    Beth Moore had a teaching about going through a trial instead of skirting it or backing away.  You don’t learn what it is God wants to teach you by avoiding the trial, only by going through.  You are a stronger Mama now because you are faithful. Praise God that He knows how much we can take!
    (I have to say, though, that the thought of you croaking at your children made me laugh a bit.  Sorry.)  

  12. Gerda Winkels says:

    As I read your story I had to think about my daughter, she just had a baby last week born a month early and as far as we know he has Down Syndrome to.

    At first I found it hard  ut now I just love the little one all the more, he is still in the hospital as he had an opereation on the bowels the day after he was born and is doing very good, They call him Benjamin  Jabez Specialy Jabez means a lot to us meaning expand my horizon, I had lunch with our son in law and daughter and was very much touched by his prayer thanking God for giving them this special baby to care for and we give him back to Lord. Yes it is a special gift from God to have a baby like that a child who gives unconditional love that is what those children do even now already we can not help but love this little one, he is our daughters fift child his sibblings have not seen him yet but from pictures   they love him

    God bless you with your special child 

  13. Dawn Wright says:

    Praying and PRAISING!!!!  So very hard!
    I would have never understood this before bringing Michael home.  He has never had a feeding tube mind you (praise God because he probably would have died from the neglect he had in his bio home).  But now, the tongue thing, the help in drinking (he doesn’t do yet), and the feeding times trying again and again- while he screams at you.  ETC.  I get it now!!!!  I totally get that part of it.  And the perseverance is a must, but a hard one. 
    Praise God for HIS HEALING!!!

  14. Lauren says:

    You have been on my mind this week and in my PRAYERS!! SO thankful that God has given you the strength needed during your sickness and that He’s answering prayers in getting Katie adjusted to her feeding. So many trials to overcome but so thankful that Katie has all of you to help her through this struggle. We’ll continue to pray for ALL of you!!

  15. Saige says:

    God is so good. He loves you so much. 

  16. Thanks for the suggestion of the decaf coffee…might come in handy! 

  17. Judy says:

    Fantastic progress!  What fantastic effort you both have made.

  18. Christy says:

    Susanna!  Her smile takes my breath away.  What a vibrant, happy, lovely little girl Katie is.  It is AMAZING to see the changes that have come to her since leaving the oprhanage.   I love watching her grow and develop.

  19. Katie’s hair is too cute.  I love the cut.

    Susanna you are literally the most giving and unselfish person I have ever known (well known through blog land).  I wish I had the honor of calling you friend.  You live the way we as Christians are supposed to live but most often don’t. The way you give of yourself, even when it’s hard and you know it will get harder, is amazing.  You are a true example of what it means to live and to love like Christ did.  Your family is blessed to have you!

    Happy Mother’s Day!!! 

  20. Ginger says:

    He who began a good work in you will be FAITHFUL to complete it until the day of Jesus Christ.
    That is amazing that she is able to drink so quickly now. I’m so impressed that you found a way to still achieve your goal while not spending all day at the table. God is blessing you with wisdom and creativity. James 1:5. How often I lean on this promise. God is so faithful to answer.

  21. Merechel says:

    Oh, Susanna, I love you!  Thank you for keeping it real!  Tuesday trials always come after Monday triumphs, don’t they?  But God is gracious, and He gave you sufficient grace.  How delighted He must have been when you and your family persevered!  I think He must have whooped and hollered when the house and laundry were caught up like your family whoops and hollers over a Katie triumph! 

  22. Doug Franklin says:

    God bless you and your family. 

  23. Candice says:

    What a proud little munchkin Katie is!!!!
     
    You’re an inspiration, Susanna.  Prayers for you and your family!

  24. Brianna D. says:

    What a precious picture of Katie snuggling up to you and smiling sweetly!  

    Thank you so much for your down – to – earth testimony of God’s grace!  That is an encouragement to me, to also accept God’s grace for the moments of pressure or trial.  Thank you for being so real! (honest and humble!)

  25. Regina says:

    It is a very hard road to travel when your child has feeding problems. Wyatt and Bailey both still struggle. Wyatt eats very little. He hold food in his mouth. He throws up a lot.  Bailey doesn’t know how to chew and swallow. They both still get their milk via a bottle at 31 mths. They both take meds for hunger. It doesn’t help that we live in a state that could care less about children. We lack the therapy we need, and insurance covers very little. It is just all a mess. I feel for you!
    Katie has come so far. Her hair is so pretty. You are an awesome mother. prayers to you all.
     

  26. Missy says:

    In videos I have heard you use one or two words to help teach your children. When you were calming Katie what did you say? One of the things that lead me to keep reading your blog was the way you were teaching Verity and your little boys. It’s so interesting to me. 

  27. I’m incredibly impressed that you had date night after a marathon long day of feeding Katie.
    It was a witness to me about making time for your husband.  We have no kids and no major commitments outside of work and are still constantly falling into the trap of “not having enough time” to spend time together.
    After reading this story I know it’s not possibly true that we could not have enough time for a date night if you and your husband could still have date night that day.

    Thanks for setting such a great example of prioritizing time with your spouse!

  28. Debbie says:

    ah, the victory of the cup must be even sweeter knowing the effort that went into it…
    i’m glad you are no longer tied to a kitchen chair, voiceless and sticky, and that you were able to write about it with humor and honesty…seeing the reality of your life with katie is beautiful.

  29. Holly F. says:

    Susanna, you are the mother I admire most. 

    Happy Mother’s Day!  

  30. Rebecca~asplendidtime says:

    This was such a blessing to read today, in more ways than one.  Motherhood is tough at times, and it gets so messy.  Sometimes children struggle against the good you are  helping to guide into their lives, and you both wind up sticky but closer in the process.  I am so thankful for your post and the wonderful pictures!  You’ve blessed our hearts by this blog more than you can know!  What a precious witness!
     
    Love and hugs,
    Rebecca and family in Alberta.

  31. Dannette says:

    Has Katie had a swallow study done?  That helped us tremendously in planning out Meya’s feeding needs.  Meya has a dx of quadriplegic cp, so her physical abilities are quite challenged, but she had maintained a healthy weight in the time she has been with us, so no g tube!  That being said, it has been quite challenging and I used to keep a calorie log as we got her weaned from a bottle – she now is able to take liquids with a straw and she eats by mouth too, but that is considered pleasure eating.  We were given the guideline of only 30 minutes per meal and pediasure was then the primary calories.  I never thought she would get weaned from a bottle, but just like you are finding out a mama’s perseverence can be amazing.  It took daily opportunities with a straw and me tapping it off to give her little tastes and our girl was sucking independently (blew her feeding specialists mind).  So my long windedness is just to encourage you to keep plugging along and letting her enjoy food as she obviously does – she will get there and it is so worth her getting to enjoy eating by mouth!

  32. Meredith says:

    I am good friends with Joan, who keeps me posted on your updates, but when I saw the the article in the Inquirer this morning, it all became a lot more real to me  What words are appropriate?  I admire you and I am praying for you seem too weak.  I am touched, and thankful for the work you are doing on this earth.  And really, really love that sometimes, as you said, the week just starts on Wed. ;)
    P.S.  Went to Creation with your husband as a youth leader many, many years ago!  Loved E-town COG!

  33. Rita from Spain says:

    OH Susanna…how smart the Lord was in picking you out to be Katie’s Mom…..How strong you are and patient and resilient…
    I am so glad things are going more smoothly….XXOO

  34. Rochelle Wilson says:

    Oh, my! Bless you in your patience! Glad the week got better :)

  35. Colleen says:

    I always smile or cry or both when I read your posts! This one I did both! To God be the glory! He is doing great things in you, Susanna! 

  36. Karien says:

    Hi susanna. i’m following you blog from Pretoria South Africa. I’ve been hooked since someone posted when you visited katie the first time. I have many children (4 boys he-he) but 4 is considered a lot among most people. and then I almost feel ashamed when I reed about some of the people with large families and just laugh at the outlook. I really admire you, but probably the most because I see you listening to the voice and prompting of the Holy Spirit! Katie’s story is such a story of HOPE and REDEMPTION.  I know you’re very busy, but hope you have time to answer my question. My 6yr old son (ds) had Hirsprungs disease at birth and had the pull through, but we are really struggling with constipation. I read about Katie’s smoothie- is it possible to elaborate a bit about the smoothies that you make for her. do you add anything else to the Pediasure and decaf coffee? I just visited a dietitian today about my son’s diet, and told her I would send her your supplement post, which I did. I remembered your post about Katie’s organic decaf coffee smoothie, and thought I’ll find out more to try it myself. Is it still working for Katie…for the constipation. I would love to hear how you potty trained her, maybe in a post….again, if you have time. Blessings to you 

  37. Susanna says:

    Karien, thank you for writing! Before too long I hope to have a blog post up titled “Mega Q & A: Katie,” and I’ll add your questions to this post. :)

  38. Sarah says:

    Hi! I’ve been reading your blog for a while, but don’t think I’ve ever commented! I just did a search for your post about decaf coffee aiding in constipation issues…all 3 of my girls with DS have this issue and we’ve tried EVERY natural suggestion, except this one! Do you have any more info on this? Are you still using it with your girls? I know you said in another post you do use colace as well…just wondering if I should give this a try! Thanks!

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