Photo journal: Tuesday

January 18, 2013 at 7:38 PM by Susanna

I woke up on Tuesday and readied myself for the new day in the early morning.  While I had slept, my mind must have continued to process all it had taken in the day before, both what I have written about here on the blog and what will have to remain unpublished.  In the pre-dawn quiet, with my little Bible still open to the Psalm I’d read over and over the night before, God made one thought crystal clear to my mind.

My agenda.  Not Susanna Musser’s agenda.

As my traveling companion and I waited for our taxi out in front of the hotel with our translator Maggie, a gifted, sensitive and tender-hearted young woman, I explained it all to her, and asked her not to feel pressured to ask the questions on the list.  We’ll walk through the doors God opens for us and see the people God brings to us.  No pushing.  Let’s wait and see what God will do.

In this manner we move through the rest of the week, consciously living in the moment of whatever God unfolds for us.

 

Tuesday morning

We’d found out the previous afternoon that right after breakfast each weekday, Tommy spends a couple of hours in a little “school” class.  I’d heard about this class and was eager to witness it for myself.

As I walk into the tiny classroom, another wave of emotion rolls over me as I look around the small table and recognize every face.  Every one a miracle child who by all human logic should not have survived to see this day.  Two miniature older children with beautiful almond-shaped eyes, one entering the teen years and the other somewhere close to the age of sixteen.  Three other small older children, all with loving parents working hard to bring them home.

And Tommy, beloved son of my heart.

If the Lord wills, four of the six children in this room will not be here before the year is out.

 

The only play Tommy has so far mastered on his own is to shake a toy that makes noise.  Over and over again, picking up a toy, shaking it and laughing at the noise it makes, abandoning it before too long if it’s silent.  Does this make me feel sad?   Quite the opposite!  The fact that he is picking up an object and holding it in his hand for any length of time is cause for rejoicing!  I see immediately that the fact that he is willing to interact with toys and that he has few sensory processing issues will help him progress more readily, despite the significant physical and cognitive damage that was done to him for many long years.

You’ve already seen the video my friend captured of Tommy on this particular morning.

I work with him for half an hour on container play [purposefully releasing an item into a container] with auditory feedback [it made a satisfying noise as it hit the bottom of the container], using consistent verbal cues ["Drop it IN, IN the cup!"], exaggerated demonstration, and hand-over-hand instruction [my hands guiding his hands to carry the task out successfully, so he could get the feel for what to do] when he suddenly catches on!  He goes from clueless to nailing it in only half an hour!  I can hardly believe my eyes, but with prompting, he does it over and over again, proud of his new accomplishment!

Today the children receive gift-wrapped, lovingly-packed shoe boxes from Samaritan’s Purse, filled to the brim with many small objects.

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We enjoy watching them explore their boxes, although we know that even the very few items which are actually developmentally appropriate will not stay with each individual child as his or her own possession.  That is just the current reality of life in Tommy’s orphanage as it is in many others.

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We interact with the children and glimpse the skills that flash through the obvious orphanage behaviors and significant developmental delays.  I feel awed by them and as proud of every discovered accomplishment as if they were my own children.

We are careful not to overstep the boundaries by taking photos of the other children, but we are kept busy helping all six children stay gainfully occupied.  The child who is the most developmentally ahead is obviously bored from lack of appropriately challenging activities, while some of the children are barely able to focus their attention on an object for a few seconds.  Some children are constantly focused outward, some inward.

We observe the efforts of the teacher to keep each child seated and occupied.  She is a kindly older woman who often resorts to singing loud, cheerful children’s songs, usually while holding or clapping the hands of the most restless of the children, or having them shake instruments.  Sometimes there are hand motions that go with the songs, and we see a couple of the children respond with the correct hand motions.

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“Tommy, squeeeeeze the duck.  Squeak, squeak, squeak, says the duck.” 

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“Here’s this lady again.  Who is she and why does she keep showing up?”

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We see into the teacher’s supply cupboard.  Of the sparse items in the cupboard, she is very proud of and grateful for a simple pop-up toy, because it encourages the children in their fine motor skills.   There are a few puzzles, especially a nice wooden stacking puzzle that one small boy works almost obsessively, getting it right every time.  Not surprisingly, an idea begins to grow in our minds.

 

But more than anything, I wish I could convey to you…

The children are so alive.

So individual.

So complete in their humanness.

And there is such an unutterable, untouched sweetness looking out from the souls of these children the world says are so broken.

 

It is obvious to us, however, that our presence has caused the children to be more restless, and we tell the teacher we know we have just made her job all the harder.  We thank her for the good work that she is doing with the children, and for allowing us to participate.  We reassure her that we won’t be disrupting her class every morning that week, say our goodbyes, and make our exit.

~~~~~~~~~~~~~~~~~~~

During the long meeting with the director that comes next, we bring up the idea that had taken root in our minds during the “school” class.

[Note:  Joe and I had ordered Euros from our bank to match the suggested adoption travel expenses only to discover afterward that we still had a significant sum of Euros left unspent from our last trip to Europe.  We decided to donate the total of whatever was left after my simple needs for the week--taxi and bus fares, one modest meal out each day for my friend and me--had been met.  On top of this, enough people contributed generously to a financial donation for the orphanage that we went to Tommy's orphanage bearing a satisfyingly large sum.  Good friends in the capital had helped us convert dollars and Euros to the local currency before we traveled to Tommy's city.  For those interested in such details, Tommy's country is part of the European Union, but has such a weak economy that it wouldn't survive a transition to Euros, so the local currency is still used.]  

During the ensuing discussion with the director, she informs us that the orphanage is unable to receive a cash donation, so she will find out the areas of greatest immediate practical need that correspond to the donated amount.  More about this, with photos, are destined for the next several journal entries.

We find that the director has come to this meeting with two main purposes.

~She wants to explain Tommy’s medical records, including testing and treatment he has received in the hospital, as thoroughly as she can.

She tells us that she is not convinced of all the diagnoses that have been given to him, and explains the testing she had ordered for him, for which she is still awaiting results.

~Knowing our experience with an older child who spent most of her life, from birth, undergoing severe neglect and malnutrition, the director wants to hear every detail of what we have learned that could possibly be useful for the older children in Tommy’s orphanage who have experienced similar mistreatment.

Did you pray for open doors?  I have longed for this opportunity for a year.

What follows becomes the first of countless teaching opportunities we are given throughout the remainder of this week to explain severe osteoporosis in picturesque detail, and the paramount importance of handling the older children according to the protocol for extremely fragile bones.  We teach and demonstrate with intensity, all the more as we have multiple opportunities to witness improper and ungentle handling of children.  All but one set of ears who hear our talk are painfully aware of how we obtained this knowledge, and it gives our presentation credibility and greater emphasis.  Our translator Maggie becomes so adept at the osteoporosis/fragile bone talk that near the end of the week she doesn’t wait for us, but launches right into each new opportunity, adapting her words skillfully to each specific audience.

This information is being followed up with a summary for the director of Katie’s tests, diagnoses and treatments after coming to the US, with posters for the orphanage walls demonstrating the correct protocol for handling a child with very fragile bones.

We move with Tommy to his next daily event–a physical therapy session.  We are made to understand that sometimes his therapy comes before lunch, sometimes afterward.  Today we try to put his very young therapist at ease and don’t take any photos or videos.  My traveling companion, a physical therapist with thirty years’ experience working with children with special needs as well as having her own young adult son with Down syndrome, quickly notices that they are using very outdated treatment strategies.  It’s not going to do him harm as long as the fragile bone precautions are taken, but it isn’t going to help him progress as he has the potential to do.

We finish out the morning by being taken to the room where Tommy will be fed his lunch.  I am asked whether I would like to feed him myself, but I ask to be allowed to observe the caregiver feeding him this first time.  I observe, and ask questions.  This process gives me an enormous amount of valuable information.

A little snippet of the video footage that my friend captures~

I come to understand Tommy’s biggest feeding challenge, how he is being fed, how he is responding to both the food and the feeding method, how he will progress once he is being fed correctly, what he is eating, and what food and feeding supplies to pack for his trip home.  In addition, I understand why we can expect him to grow after bringing him home and altering his diet–his current diet  is real food, but consists mostly of carbs rather than protein, and everything is cooked rather than fresh.  No wonder the little ones with extra chromosomes I see this week are looking a bit on the chunky side.

 

Tuesday afternoon

We watch Tommy’s caregiver put him down for an afternoon nap, say goodbye, and head out by taxi to our favored eating spot.  The food is inexpensive, freshly made and perfectly seasoned.  I’ve never eaten a salad in the US that compares to those served to me in Tommy’s country.

This break gives us a little time to re-group, compare notes, bounce thoughts off one another.

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We arrive back at the orphanage and meet Tommy in the visiting room, fresh from his nap and snack.

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Ah!  The Bag!  What new and delightful treasures await me in there today?

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I’ve already gotten the message through to this otherwise nice lady named “Mama” that I am not interested in tasting her treats.

 

But I’m sure there’s something else in The Bag I’ll like better.

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I impress everyone by paying a little attention to a book.

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Mama helps me know where to look by having me feel and pat the pages…

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…and by using a few words, like “Orange, orange,” and “Turn the page…” 

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…but mostly by moving at lightning speed through the book before my attention span comes to an end.

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I need to rest on my back every so often.  Here I am resting before Mama and her therapist friend assess me.

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They take their time assessing me, moving slowly and cautiously and giving me plenty of breaks.

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Maggie takes lots and lots of video footage to help them remember the tremendous amount they learn about me during this visit.

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Resting on Mama’s knee~

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I learn some things today, too.   Now I know that trucks are fun for more than just shaking.  It feels really good under my hand to zoom a truck back and forth on the floor.  This one is a cement mixer, and I begin to learn how to use my hand to make the back spin around.  “One hand holding; one hand doing,” I hear Mama say, as she helps me, hand over hand.

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Tommy has been working hard and needs to rest.  We decide to take this opportunity to snap some photos demonstrating the proper and improper ways to handle a child with fragile bones.

Besides normal common sense measures that are taken for every child, like avoiding a blow to the side of a long bone or the head and avoiding falls…

When changing the diaper or clothing of a child with fragile bones, never pull the body upward by grasping the ankles.

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Instead, gently lift the child’s body from beneath to remove the clothing…

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…and to pull the child’s clothing back up.

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Never pull up a child with fragile bones by grasping the arms.

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And never lift a child with fragile bones by grasping the rib cage.  This can contribute to spinal compression fractures like the ones Katie suffered.

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Instead, lift the child by supporting gently from underneath…

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…one hand and arm supporting the child’s upper body from one side, and your other hand and arm supporting the child’s lower body from the other side…

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…very gently…

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…like so.

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My friend safely transfers Tommy to his wheelchair.  [Among many other useful things, I learn a wheelchair rule this week.  Brakes are the first thing on and the last thing off.]

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We explain over and over again throughout the week, “Always lift the child from beneath.  Let your strong arms be what bears the weight of the child, and not his own fragile bones.  It’s not hard to do, it’s just a new habit to learn.  We had to learn it, too, and have handled Katie in this way for so long it has become second nature to us.  Always lift from beneath.”

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Mellowing with Mama before supper, bath and bed.

Tommy is a pure joy.

No other words necessary.

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27 Responses to “Photo journal: Tuesday”

  1. BLM says:

    It is so wonderful to see you with Tommy.  I have a picture of little C. in my bible and pray for him and all the little ones in Tommy’s orphanage every night.  Thank you for keeping us updated on your experience.

  2. Kate L. says:

    Susanna,  There is no doubt in my mind; you are doing exactly what you were put on this earth to do.  God bless you.

  3. Amy says:

    Tommy looks like he is doing so well. What a sweet smile he has. 

  4. Kim Zim says:

    Dearest Susanna -
    THANK YOU, THANK YOU, THANK YOU for sharing your gift of not only writing but also in teaching!  I’ve learned so very much from your blog and have been blessed to share some of those things with others.  What a blessing Tommy is and will be to your dear family!  Praising GOD as I read this post and look forward to hearing more!!
    You my friend are a blessing!

  5. Jamie Garcia says:

    I haven’t checked on you guys in a LONG time, look at Tommy! Happy New Year and prayers for your journey home!

  6. Cindy says:

    Precious in His sight are the little children!!!!!!  Praise God for how He’s using you for these children and orphanage.

  7. Lisa says:

    I’m laying here on the floor with my daughter, her warm little body on my arm, her warmth distracting and comforting.  she’s watching the pictures as they pass in front of her, and I realized as I looked at the last few of him in this post, that he is [almost 16] and just now feeling the warmth of his mother’s breath, the closeness of her face.  what sweet moments you have ahead of you. what precious gifts you will be to each other. 

  8. Carol says:

    Thank you so much for this glimpse into your time with Tommy and others at the orphanage, Susanna. The combination of pictures and your words makes your experience come alive. Tommy is such a beautiful child. I love, love the last picture with the joy shining in his eyes as he is embraced and kissed by his mama.

  9. Laura Busch says:

    Susanna,
    God’s goodness and your words leave me again in tears! Blessings to you and all of the Mussers!
    Laura

  10. Mary says:

    Blessing, Blessing, Blessing! Thank you for sharing so richly this very precious journey. I’m learning so much as I read your posts! Can hardly wait for the next one! 

  11. Susanna says:

    Thank you so much to all of you who are leaving comments! They always encourage my heart, especially during tough times!

    In case any of you happen to wonder why I’ve edited your comment, it’s because we’re having to take pains to publicly disconnect Tommy from a certain orphanage most of you know by name. So I am leaving lots of great information and photos out as well as making blank statements of fact using no comparison words, and am altering comments as needed to comply. I’m sorry to have to do this, and I hope you can all understand that it is necessary to protect the good work that is being done in Tommy’s orphanage. Thank you again most of all to those of you who have been praying so long and so faithfully. Please keep praying although I can’t tell you many details I’m aching to tell you! God is still moving for the children here, even those who are no longer available to be adopted! Pray, pray, pray!

  12. Katie says:

    Susanna,
    I haven’t read a blog post from you in over a week without crying.  Today is no exception.  Not to mention I’m freshly emotional from writing something about my little patchwork family that has been on my mind a long time.  It’s so beautiful to see you there with Tommy.  I can’t wait until he can come home.  You know I’m praying for you, all the time, friend.  Bless you and your family.  You’re a wonderful mom and I am certain that when God looks down on you and your family, He smiles and sees a job well done.

  13. Kim says:

    You definitely saved the best pic for last, Susanna.  Love it!  Tommy looks so happy with his Mama.
     
    xo

  14. HeatherK says:

    I was making it through this without crying today.  Until I got to those last 7 pictures.  Tommy and his Mama.  So beautiful. 

  15. Jennifer says:

    I am so happy that God has blessed you all by placing Tommy in your hearts and making him part of your family. I look forward to seeing him progress even further and faster once you have him home!

  16. Lea says:

    Oh my Susanna!
    You are doing such wonderful work, not just for Tommy but for all those little ones who so need someone to love them. My cousin was a severe brain trama quadraplegic and her parents refused to do her therapy with her (long story).  It broke my heart to see other children (and later adults) who had so much more quality of life than she did after going through similar circumstances.  The difference you are making will be noticed and be such a blessing to those young people.
    That last photo of your Tommy is just precious!  I have a sneaking suspician that you have a little boy with a fine sense of humor just waiting to get out!  That twinkle in his eyes is just beautiful.
    Blessings and continued prayers for you and your whole family,
    Lea

  17. Kim says:

    Well sweetheart – what a son you have!  He is just melting into your embrace even if you really can’t figure out the right treats to bring :)
    You’ll have to remedy that when he gets home.
    Much love my dear!
    Kim

  18. Elizabeth says:

    From a speech pathology point of view I love the eye contact and the social smile.  He is such a beautiful child.  If my husband and I can’t have kids on our own I was considering  adopting a child with special needs who can benefit from a loving and caring home.  We are going to continue to try for a few more years but are starting to explore more fully the adoption route. 

  19. Tami Ann Swaim says:

    Tommy is so sweet.  What  a precious boy.  Poland also is in the EU but does not use the Euro yet.  The photo of the table setting in the restaurant made me home sick for Poland.  I have some more clothes to pass on.  Some of it is older boy jeans and button tops.  Mark is in Poland right now, when he’s back I will contact you about getting it to you. 

  20. Sarah War inner says:

    Susanna!
    We are rejoicing in how God has worked so far!  Feel blessed to be able to pray for you.  Thank you for sharing!!

  21. Barb says:

    Does Tommy have any verbal language? I may have missed that in your writing or maybe you didn’t mention it?! It is amazing to see how much healthier he looks in these recent pictures compared to earlier pics. When is gotcha day?

  22. Susanna says:

    Nope, no verbal language yet, Barb, but he understands a lot. We have hopes for some speech for him someday because nobody has so far done anything for his oral motor muscles. There’s definitely room for improvement!

    We will most likely be going back to get him in the beginning part of June. :)

  23. Anna T says:

    Thanks for the post, I LOVED reading it and seeing the pictures.  A huge praise that things went well with the orphanage director, PTL!  I am so thankful that the notes were translated and were given to her when you were there.  What an alert boy Tommy is and smart — wow, I’m looking forward to seeing him continue to blossom!  Praying for things to go smoothly and quickly now…you look adorable with your sweet pregnant belly Susanna — Tricia is also pregnant (due in September).  Many blessings to you and yours,  Anna

  24. Katie says:

    To agree with several other commenters, the last set of pics of him in your lap are AWESOME! Also one of the ones with The Bag, his hand on your leg is precious!
    I apologize if I have missed info on Tommy but I am curious about the tongue thrust. I believe you shared that he has CP. Is this a common characteristic of CP? I know it correlates with Ds but wasn’t familiar with other situations where children have tongue thrust. Is it (also) related to the institutionalization of the kids? I hope this isn’t offensive – I don’t mean it to be. I am truly just curious. 
    Can NOT wait for you to get him HOME!

  25. Melissa C. says:

    The last few photos just made my heart stutter. Oh, Tommy. Praise God you were found.
    It’s so surreal to see familiar packages from Target in that setting! =)
    Very encouraging to hear that the director is concerned and is exchanging so much information with you. God opens doors that many would have considered firmly closed forever!
    Bless you and your family as you walk this journey!

  26. Susanna says:

    Thanks for asking this question, Katie! We’re actually not 100% sure that Tommy has CP, and the director mentioned that possibility to us before we mentioned it to her. Interesting, huh? Putting any baby with even minor muscle tone issues into a bed and leaving him to lie there neglected until he is nearly adult age will have long-term physical effects, CP or no CP. Tommy’s muscle tone is on the low side (which is familiar territory to us!), which could help explain the tongue thrust. Low muscle tone is one of the most common characteristics found among people with Down syndrome, but they are not the only ones who can have this characteristic.

    Interestingly, we are finding that the biggest hurdle that Tommy and Katie face along with other children who survived similar circumstances over such a long period of time is NOT their original diagnosis, it’s the effects of the profound neglect. Those of us who have adopted older children from these conditions see a lot in common among our children, and what they have in common has little or nothing to do with their original diagnosis. Said yet another way, the behaviors and challenges we moms connect over were caused by the treatment our children received because they were born with special needs, and not caused by the special needs themselves.

  27. Cassandra says:

    Susanna, your resonse to Katie was sad but well said. Because I like baseball I will use this metaphor. These vunerable kids didn’t start with a level playing field and over time were considered to be “off the team.” 

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