Mama needs an NG tube

February 22nd, 2012

A couple of weeks ago…

First week in a very long time without the slightest pressure to blog, and what a relief!

That week flowed along furiously and beautifully.

At least, the parts of it that I could remember flowed beautifully.  I do have a forty-year-old mommy brain, after all.

By Saturday evening, it almost felt like the old days around our house again.

Clean, tidy house, full of sleeping children, and smelling like the freshly-baked shoofly cake that was cooling on the table, destined for the next day’s meal with our church fellowship.  And it wasn’t past midnight!

Laundry was completely caught up, a feat that is not to be underrated.  Even the ironing basket was empty.

And all that in spite of an atypical Saturday in which Joe, Joseph, and Daniel all worked, in addition to the usual chores, two piano lessons, three dishes for the next day’s church meal, and four little-boy haircuts.

I considered blogging about how well it was all working, but the early bedtime called my name more insistently.

That week was so fast-paced that I only took a few photos, and those hastily.

“Oh look, how cute!  John Michael, could you run upstairs for the camera?”  

*snap, snap, snap*  

…set the camera up out of reach of small fingers, and go back to preparing the little girls’ supper in the midst of the pre-meal whirl of activity… 




I jotted down a few notes about Katie’s progress.

She is more affectionate, more relaxed, more consistently cheerful, more receptive to learning.   

She’s caught on to the toileting idea.  

She’s cooperating with all the therapy we do with her, physical, occupational, and speech.  She’s getting more comfortable with the concept of play.

Sounds good, huh?

Before I knew it, Saturday night had arrived again, leaving me–WHEW!–breathless.  It would have been nice to blog on the 7th–the date two years earlier that we had received the news of Verity’s Down syndrome.

I had found a photo taken at random one Sunday night, and nearly forgotten.

This woman had a baby girl in her belly.  She would soon walk wearily up the stairs and make the telephone call that would change her family forever.


But the 7th was date night, so I refrained from blogging.  Joe and I ate our meal together and quietly reflected on the previous two years.  How tremendously grateful we are that He took us from the Before into the After.

By that Saturday night, both Verity and Katie had finally succumbed to the illness that had already run through the rest of the family.


Sweet cupcakes~



The next week and a half was pretty much a blur of caring for two very fretful little girls with intermittent low-grade fevers, next to no appetite but a need for food and drink anyway, uncontrollable deep cough that woke them many times each night, and in Katie’s case, an intestinal bug that had to work its way laboriously through her system, causing the need for many baths and outfit changes (hers AND mine).

By this past Saturday night, I was hanging on for dear life!  I hadn’t eaten or slept a whole lot, and my already-sore wrists and lower back ached all the more.  I joked, “I’ll rest when I get to Heaven.”

I kept thinking of Jesus’ words, “Now my soul is troubled, and what shall I say?  ‘Father, save me from this hour?’  But for this purpose I came to this hour.  Father, glorify Your name.”

I had to look it up and see the context, and was greatly fortified in my soul.

“Most assuredly, I say to you, unless a grain of wheat falls into the ground and dies, it remains alone; but if it dies, it produces much grain.  He who loves his life will lose it, and he who hates his life in this world will keep it for eternal life.  If anyone serves me, let him follow me; and where I am, there my servant will be also.  If anyone serves me, him my Father will honor.”

And it struck me–

This week is why many people don’t want a child with special needs.  This is what they’re afraid of!  

This non-optional sacrifice right at the very core of life.  The painful giving up of self, over and over again.  The self that is still alive and active, believe me!

We know He doesn’t shower us with resources to ensure that we would never feel uncomfortable again.  So now I am feeling uncomfortable!  Will I now ask, “Father, save me from this hour?”

For this purpose I came to this hour, to pour out the strength of my life to the weak and needy, like Jesus continually does for me!  This opportunity to fall into the ground and die is what the whole of my life until now has been crafted for!

Both girls are clearly past the worst of it now, and are working their way back to healthy.

Verity was the first to succumb and the first to recover.

Katie had regressed in every area where she’d made gains, but most of all with eating.  Even the sight of the syringe and bottle of milk made her cough and cry until she gagged.  So we’re back to tiny tastes of yummy foods to remind her that eating is fun!

She had been so cranky, pushing me away or just tolerating me.  So it brought tears to my eyes this morning when she laid her head on me, patted me, made her happiest face, and crooned her happiest Katie-words.

Our happy and healthy girls are back, and we are grateful.





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21 Responses to “Mama needs an NG tube”

  1. Mandy says:

    As we make one of the biggest decisions of our life, you don’t know how much I needed to read what you’ve written. Thank you….

    So glad your beauties are feeling better! 

  2. Kristina and Family of 4! says:

    Love this post of yours!
    Thanks for sharing!

  3. You are amazing!  Your 40 year old brain is amazing!  The way you unselfishly care for your family is amazing!  You inspire me to be a better mom.  I have three girls, the third has Down syndrome and we will be picking up our son from Hong Kong in a few months.  He also has Down syndrome.  My point is, I worry about my selfishness and I only have three kids right now.  I would say I was in Awe of you but Awesome is a word saved to describe my God and only Him.  So I will say God has done an Awesome work in your life.  You, my blog friend, are an excellent mom! An excellent blogger!  An amazing woman of faith!

  4. I cried my way through this. This post was truly an answer to my prayer tonight. Thank you for living your life in a way that you are not only truly serving your family, but those of us who read your words. I can only hope to GET IT like you do one day. You see the big picture. You get it. Thank you for teaching me today.

  5. April(justonemorebaby) says:

    Poor wee baby girls (and poor Mama! Throwing up is a tough one for me!) Beautiful pictures and big hugs to you!

  6. Jeane says:

    Glad to hear you all are on the mend…Love your heart and perspective on your life serving others….Prayers for a quick recovery for all.

  7. Jodi says:

    Susanna, what an encouragement you are!  The Lord knew I needed this tonight.  We were at CHOP today with our new little man when he succumbed to the tummy bug we’ve had blowing through our home – all over the waiting room – poor boy!  I really felt the dautingness of his special needs today (even though the sickness was nothing to do with them), especially since I feel like I’ve had one nasty cold after another all winter!  How good to be reminded that the Lord needs to bring me to the end of myself in order to show His glory.  On a happier note, I got to chat briefly with Dr. F about your Katie (who was one of the only Bulgarian adoptions she’d handled before our little guy today), and it made me think what an impact you must have made on everyone there.  Amazing!

  8. Jillian says:

    Susanna, thank you for this encouraging post. I was a blessing to me. :)

  9. Debbie says:

    Susanna, thank you so much for taking the time to teach us, even through your exhaustion…i’m glad the girls are feeling better and please please take care of yourself (too bad it’s not as easy as dropping an ng tube!).
    is it selfish of me to say that i’m glad you’ve found a little bit of time for blogging and posting pictures?

  10. Shari says:

    I’m glad to hear the girls are feeling better!

    Eric was telling a woman in our community about Katie the other day.  Their conversation started with her blustering about older people having babies and so much Downs syndrome and how they shouldn’t have those babies.  Eric was able to tell her how your family was so perfectly prepared to love and care for Katie, even to committing to care for her until she’s an old woman if necessary, to give up your lives for her.  That was what our friend was upset over, giving up self for another.  Katie’s story is going very far and convicting hearts.  I’m sure the conversation here will continue and pray it will end in this woman seeing how Jesus gave up self for her.  :)

  11. Rachel M says:

    Praise the Lord for this example! It seems like this attitude is what I need to focus on in order to raise real, godly children for Christ. Thank You dear Lord! And dear Susanna. please Lord give me the strength and grace to give up myself!

  12. Rita in Spain says:

    So glad they are feeling better!!!
    And Susanna, you are awesome! I am 41 and don´t have half the courage and strength you do.

  13. Ashley says:

    Thank you for this beautiful post.  I am in a different spot in my journey, not so many kids (5) and my foster/adopted twins with not as severe special needs, yet how you described your journey this week sound sooooooo familiar to me!  I knew and felt just what you said.  I’m am so grateful for your sharing Jesus’s words to us readers.  It was very interesting what you said about Katie’s regression when sick.  Our twins (16 months old) do the same thing when they are sick.  Our girls have been home 4 months and I’m finally getting to the spot where some days feel normal and the girls don’t seem like they are doing things that different then my bio ones did at that age, and then they get sick and a remember just how broken their little hearts are, because they REALLY struggle with basic functioning.  Very interesting that regression thing. But it’s an opportunity for me to die to myself all over again, and an opportunity to bond all over again.  And in that is the blessing!      

  14. Holly F. says:

    So glad your family is finally clearing out the sick air and recovering. 

    I needed your words today. I have a child that began a fever, one that missed the bus, and me with a new medical diagnosis that is changing the game of life and my job is suffering because of it.  Instead of seeing as an hour, I’ve been feeling sorry for myself, and I’ve been angry with my kids for things that they can’t really help.  The guilt becomes unbearable after I’ve raised my voice and then I cry.  My soul has been very troubled and I have fought the pain of giving myself instead of recognizing it and welcoming it. 

    Thank you Susanna for giving us your words.   Isn’t it amazing how God uses us to minister unknowingly to so many others…exactly when they need it?  Today, as days before, you have ministered to me when I needed the most.

  15. Missy says:

    I know that you are exhausted, but I have to feel so good that Katie and Verity fought off this illness without Dr.s and hospitals. Thank you God for good  immune systems!

  16. Heather McFarland says:

    Praise God for his goodness and mercy!  You continue to be in our prayers daily.  We think of you often and we look forward to your posts.  So glad to hear the girls are doing better!  Thank you for sharing.  I will pray that you get some much needed rest!

  17. Sarah says:

    God Bless you.  God has blessed you.  God is blessing you.  

    Thank you for sharing. 

  18. Anna T says:

    Happy belated 40th birthday!!  I enjoyed your post tremendously today as all 4 (I know only 4, LOL) of my dear children are on antibiotics for one ear infection and three strep throat (a 1st time that ALL are on antibiotic).  I went yesterday and (thankfully) my sore throat is not strep…  When you get an NG tube let me know and maybe we can get a 2:1 discount, just kidding!!  I’m glad that your family is on the mend and that things are going more smoothly again.  Our family is also doing much better, PTL!!  ((Hugs)) and prayers…

  19. Amber Byler says:

    I am wanting to take the sitiation in B to our churches  womens group in hopes to get donations for the medical funds for these children. I was wanting to know if I could use a before and after shot of Katie to show to our ladies. I am a member of South Main Missionary Baptist Church. My husband is the music minister there and are supporters of Reece’s Rainbow if  you could email and let me know what you think. I would appreciate it so very much.

  20. Joe says:

    Amber, YES you have our permission. Thank you so much for asking and especially for doing what you are doing to help the rest of the children!!

  21. Valerie says:

    Beautiful post.  Thank you so much.  So much!!

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