This current peace

May 22nd, 2015

When we’re up at the cabin, we’re taking a vacation from more than just school and jobs.

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With no internet or cell phone reception, we’re taking a complete break from the outside world.

 

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I don’t bother to take photos, knowing the memories will be preserved by our two older girls.  For me, this is more pressure relieved, more space to just be.

 

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The rhythm to our days is stripped down to the simplest needs, natural as breathing.

 

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Up in the mountains, we don’t even have to look at the clock on the microwave if we don’t want to.

Most of the time, we don’t want to.

 

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Breathing out the pressures of myriads of responsibilities and the crowded competition of screen time and screen world.

 

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Breathing in rest of body and soul, unhurried connection with each other and with the fresh beauty of this world God has gifted to us.

 

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The littlest ones revel in the wide porch that wraps around three sides of the cabin.  We joke that this porch has more square footage than the downstairs of our house.

 

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It was satisfying to have Joseph and Lindsay up there with us for one overnight.

 

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They set up a tent, as did our older kids, and subsequently most of the children slept outdoors most of the week.

 

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The week started out warm, but grew cooler, until it actually snowed the day before we left to come back home.

So the little ones and I snuggled up cozily by the fire and read books together, or napped in the cabin while the others explored the countryside for hours each day.

 

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The most captivating daytime game this year seemed to be Lord of the Rings Risk.

 

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It’s our time-honored tradition to trade Jelly Bellies before beginning our game of the evening.  We don’t commence until trading is complete and everyone has his or her favorites.  Fortunately, someone likes the detested mango and buttered popcorn flavors.  <grin>

Four happy boys loved staying up late playing games with us this year.

 

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I spent a great deal of time lying about shamelessly, reading to myself, reading to little people, or doing nothing at all for a change.

Except breathing in…and breathing out.

 

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We didn’t know it for sure until later, but I was emerging from the end of the dark tunnel.

Now we can turn around and see its gaping hole, back there.

 

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Breathe in.

Breathe out.

 

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Back home in our own little neck of the woods, I felt the battle of the Screen begin again, felt it more keenly than before.  I don’t want to give up the close connecting time we had in the mountains.  I’m longing for genuine and deep relationships with the real people in my life.  How can I keep some boundaries in place against the creeping competition of the screen?

What about this screen time is worth more than the real life relational time I’m giving up for it? 

It has to pass the Greater Good test.

 

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That soap box summary helps to explain the lengthening distances between my blog posts and the as-yet-unanswered emails in my inbox.

Plus…

 

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Within our first week home, among other happenings…

…we jumped back into school for the home stretch…

…we celebrated Ben’s second birthday…

…all four of our family’s vehicles needed to go to the shop, but they obviously had to take turns like nice little boys and girls…

…Daniel tore the ACL and both menisci in one knee playing ultimate Frisbee, so has surgery ahead of him this summer rather than ultimate Frisbee…

 

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…and we welcomed a house guest for the weekend followed by Mindy coming home from college, necessitating spring clean-up and transformation of the playroom back into her bedroom!

 

We wrapped up our family’s academic year on the 15th, but Katie still has weeks to go until her last day on June 10th.  To answer a blog commenter, her educational and other special needs are being expertly addressed by the staff in our local, small, self-contained multiple disabilities support classroom.  It has been an excellent choice for her.

 

Here’s Kate-Kate waiting for her school bus, enchanted by the springtime chirps, coos, warbles, and crows of the early birds in our neighborhood.

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We were so sorry to hear that her teacher, Mr. Allen, is retiring next month after thirty years of teaching.  It looks like she’ll be able to stay in the same classroom, with the same paras who help Katie with eating and pottying.  We’re thankful for that continuity, and are confident that she will handle the transition well, as she has consistently shown remarkable resilience.

 

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Mr. Allen was the right person in the right place at the right time for Katie.  He gave her such a good start and has brought her so far over the past two years.

 

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We are so grateful for his kind heart and hard work with her.  He says about having Katie in his classroom, “She makes everyone’s day just by being Katie!”

 

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Thank you, Mr. Allen, for your dedication and enthusiasm in teaching our happy girl.  We will miss you, and we wish you all the best!

 

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Our local school district holds Ophelia Day each year, a field day for students with special needs.  Each student is paired up with high school students for the day.  Katie’s Ophelia Day buddies guided her through the various activities, and Katie was in her glory!

More bubbles

 

Where are they coming from

 

bubbles anyone

 

Balloon animals 1

 

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Alcapas are really soft

 

By May 15th, we were so ready for the open windows and open-ended creative free time of summer, especially after our taste of it at the cabin.

 

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I jumped right in to conquer a few organizational projects that had been put off until we laid our books aside.

 

The last day of school also traditionally means the older children set their tents up in our woods, and they are always eager to share their space with the younger ones when we give the okay.

 

And just this week, first thing Monday morning, I started another full time job that will last for an indefinite period of time.

 

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In addition to keeping up with Verity’s neurodevelopmental program, I began potty training her in earnest.

Pray for me.  Ha ha!

 

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If you have experience successfully potty training a child with Down syndrome and have tips to pass along, I am all ears!

 

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I’ve laid in a hefty supply of thirst-inducing snacks, juice, both cloth and disposable training pants, and…uh…patience and realism.

 

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She quickly mastered the ability to get all the steps in order independent of prompts or assistance–walking to the bathroom, placing the stepstool in front of the toilet, opening the lid, placing the potty ring on the seat, climbing up onto the stepstool, putting her pants down, and seating herself appropriately.

She now says, “Done,” when she thinks she’s done, usually when she is, sometimes when she wants to be.

 

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However, she hasn’t shown any signs of awareness of needing to go before she goes, or made any move toward the toilet without reminders.

 

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As with her older brothers and sisters, I’m focusing her on the skill of staying clean and dry rather than on producing something at a certain time.

 

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She is taking it in stride for the most part, sometimes growing annoyed toward the end of my shift.  Yes, I’ve limited the process to a daily shift that starts as soon as I’m ready after breakfast and ends when Katie gets off the bus.  And there are days off when necessary.

 

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This will most likely be the work of many months, so it must be as stress-free and doable as possible.  Do I remember writing years ago on this blog that Down syndrome is a marathon, not a sprint?

 

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But for me, it is fulfilling and worthwhile work.  There aren’t words fierce or enormous enough to describe the love that wells up and overflows from my heart for her.

 

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Katie enjoys every bit of summer fun she can get after school hours and on weekends, for now.

 

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While at the cabin, I came to the decision to mentally and emotionally let go of my goal of having her bond with me.  I felt like I’d been flipping the same light switch on and off for more than three years with no appreciable effect, and it was time to accept that she may simply be unable to attach to one person in any normal and healthy way.

 

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It didn’t really change how I interacted with her, just took the inner pressure off and made it okay with me that there was no real progress happening.

Interesting that she’s made obvious progress in bonding with me since then.  A feeding team who assessed her a year ago and again six months ago said a couple of weeks ago that it’s like she’s a different child.  Not only is she doing real rotary chewing and hardly doing any stimming between bites now, but they noted that in contrast to the past, she is very tuned into me.

 

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We have no real confidence that we or anyone else knows anything about bonding as it relates to Kate-Kate with her unique history, so make of it what you will!  But we wonder whether it’s a phenomenon similar to a previously infertile couple conceiving shortly after giving up and starting the adoption process.

However it is, watching her gain some normality in relation to other people, light up and reach for me when she sees me, talk happily about “Mama,” and pull me in for lots of hugs and kisses is sweetness unsurpassable.  And I am indescribably grateful for the gift of this beautiful girl I love beyond words.

 

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The remaining photos are credited to Mindy Walls, taken on Mother’s Day at the little playground near my mother’s grave and at Baskin-Robbins, where we stopped for ice cream afterwards.

We’re delighted that Mindy’s come back to be part of our family now, and proud of her for graduating with a degree in photography.  Check out her brand new website, Mindy Walls Photography, and if you’re local, maybe you’d like to give a fledgling photographer a chance and schedule a photo shoot with her!  In the meantime, her first priority is to obtain a driver’s license and a job to help pay off her remaining school debt.

 

Mindy Walls~

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So does all this talk of furlough mean the battle is over?

I’m thankful to the Lord for this current peace, but to quote a reader of this blog–

“If living in community with other believers has taught me anything, it’s that God does not protect his children from the ‘worst case imaginable.'”

 

Mindy Walls~

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Terrible tragedies should be occurring at every moment of every day in our lives, and it is God alone who holds them back from us.

And sometimes He does not.

 

Mindy Walls~

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God has not stopped being God as a result.

He will bring about what He purposes to do, and friends, even in the most intense and terrible pain, He is bringing about only good for His children.

 

Mindy Walls~

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God will do what God will do, and I’d rather be suffering with Him than fighting against Him.

More than that…

 

Mindy Walls~

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Colossians 3:3 isn’t a promise of future blessing, it’s how things stand right now, in the present.

“For you died, and your life is hidden with Christ in God.”

 

Mindy Walls~

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During all those years that I felt so safe in Him, and then during all these past months when I felt like an unsafe person living in an unsafe universe with an unsafe God–all this time, no matter what I happened to be feeling at any given time, one truth was and is and will always be true.

I have died, and my life is hidden with Christ in God.

I am eternally safe in Him.

 

Mindy Walls~

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22 Responses to “This current peace”

  1. Barb says:

    Bless you Susanna and your family! This is a beautiful post.

  2. Deanna says:

    Great blog post, Susanna! God is good, and I am thankful for this current peace.

  3. Melissa says:

    Abby’s the same age as Verity… I started trying to potty train her just after her 3rd birthday. It was a LONG year with lots of patience and cooperation from her daycare teachers before something just clicked right around her 4th birthday and she got it. She has accidents now and then but at nearly 5, they are very few and far between! Nighttime is a different issue and one that I am just not going to fight. Planning to wait until she consistently wakes up dry before giving up the pull-ups. Good luck, mama! :-)

  4. Louisa says:

    Sweet family time is such a precious gift! Treasure it as well as being able to look back and see where He has brought you! Keep moving forward focusing on Jesus!

  5. Susanna,
    So interesting what you wrote about releasing the dream of your sweetie bonding to you. I also came to that point after 7 years with a now-teen, and very soon after, things started improving with us. I think somehow my releasing that longing helped her relax enough to start to actually enjoy me. And certainly it made it easier for me to just enjoy her as she is too….
    Praying for your family….
    Mary

  6. Mary says:

    Beautifully written, truly God inspired, and GREATLY encouraging! Thank you dear friend! Love you from NH!! <3

  7. Pam says:

    I don’t have personal experience potty training a child with DS, but I read an excellent blog post on one Mom’s experience successfully potty training her son with DS (quickly)- I thought it sounded like an excellent method so I thought I would pass it on… http://homeiswhereitsat.blogspot.com/2013/01/potty-training-101.html Blessings to you and your beautiful family!

  8. Blessed says:

    What a wonderful update. Thank you so much for sharing all that!

    Family and peace before blogging. Much as we all love you and eagerly want to see how you all are, we also completely understand that priority. <3 God will convict you as to how He might want you to keep ministering through your blog and reaching out/being available to other parents. And things might happen in seasons too, and that is fine. You have complete liberty to listen to Him and only try to please Him.

    The photo of you with kids coloring chalk on the easel–your hair is so adorable! It looks almost 20's or 30's–very becoming on you.

    I loved those photos of Katie in the classroom! So glad you had such a great teacher for her, and I pray his legacy will live on in the mindset he has instilled in others who will remain. : )

    Much love to you all this Sabbath morning!

  9. Susanna says:

    Thank you so much, Melissa, for the moral support, and Pam, for the blog link! I’m gleaning, gleaning, gleaning! Below is an email I received in case other moms may also find it helpful!

    Dear Susanna,
    I have a…daughter with down syndrome, so I’d like to pass on what worked for us with potty training. One of her early therapists told me “you have to find their currency”. Using that idea, [my daughter]’s favorite thing to do at the age of three was watch cartoons. To accomplish our potty training goals, I announced to the family that for an entire summer nobody in the house was able to watch any TV unless [my daughter] was in bed! I bought a small DVD player, and I happily told her that if she went potty she could watch it for 15 minutes while in the bathroom. Where before it has been a struggle to get her into the bathroom, she was now highly motivated to “produce”. After she was eagerly trying to go to the bathroom, I phased the DVD reward out to only being when she actually “did it”. Within a few weeks we were potty trained! I still reminded her at times, but for the most part she “owned it”. This will only work if Verity loves Mary Poppins or any other cartoons, and that is the only place she can watch them–if that is the case, it’s very effective. I will be praying for you!

    Love and prayers from another mom in the club,
    B

  10. Sarah G says:

    <3. I especially love the news about Katie seeking you out. I know that must be precious to see after so much time of longing for it. It's amazing how many things God gives to us as we let them go. And sometimes he does not. But he's still good <3 Thank you friend.

  11. Carol says:

    I found this series of videos very inspiring. Before this, I really wasn’t motivated at all to even start potty training with Niko. We want to start training once he’s done school this summer, so I can’t comment on the successfulness of these methods/tips, but the speaker seems so down-to-earth and makes it sound like it can really happen. The videos are on a site about autism, but I’m sure there would be overlap.

    http://www.actcommunity.ca/education/videos/toilet-training-for-everyone/

  12. Carol says:

    I also just wanted to say it is so beautiful to read how your family is doing.

  13. KT says:

    What a terrific update to read, thank you for taking a little screen time to write it. Mindy’s photos are gorgeous!

    I do wish you luck with potty training Verity.

  14. Gina in Spain says:

    I loved reading this Susanna..know we are with you and support you…..Hugs…

  15. Kathy Funk says:

    What a lovely post. I am so happy you are starting to emerge from the darkness! Praise our dear heavenly Savior! I loved your comment of just breathing in and out:):)

  16. Elaine says:

    I really love reading your updates! I understand your needed to make space between posts and your life but I do thank you for updating us on your precious little ones (who are now getting MUCH bigger!) I am sure you will be successful with the potty training!

  17. Susanna, it’s so nice to see your updates. I still think of you often as I have Tommy’s little picture on a mantle in our room. I know life is still so very hard for you. We love you and you are all in our prayers. A friend I met from your site (Elizabeth Archer), shared that many down syndrome children are unable to be trained before the age of ten. So, don’t be hard on yourself if she is not ready. : ) Bless you Susanna. I’ll write you soon as you’ve been on my mind a lot lately.

  18. Patti says:

    I was able to successfully potty train Lily in March -she even sleeps dry ! It was such a victory for us, but I really believe she was just ready. We had tried four other times with no success -this took five days of devoting ourselves to getting it done and at the end of the fifth day she got it. Call me if you need encouragement … I’m sure I don’t have anything to tell you that you don’t already know though ;)

  19. Lucy says:

    I don’t have any personal experience, but in college I worked summers at a center for children with significant disabilities. One thing we did that can be helpful is to chart the pottying experience. We had a time chart for each child that we listed successes (and marked whether they were self-initiated or encouraged), accidents, and for children who fought sitting on the toilet, whether they went willingly or not. For some children, you can see a real pattern of bathroom habits, which can help train you. If you know your child rarely goes in the morning, but frequently needs to go in the afternoon, you can be more vigilant during those times. Other times it is simply helpful to look back and realize that yes, compared to a month ago, this child is having less accidents, self-initiating more, or is more compliant about sitting on the toilet. Conversely, if a child is showing no progress, sometimes the decision was made to wait a few months and try again. For children where the skill of clean and dry may take a significant period of time to attain, data can be very helpful in seeing the big picture. Good luck with little Verity! Your attitude toward the situation is fantastic!

  20. Enniagh McGuire says:

    Hi Susanna.

    One of my sons has CP, and potty/toilet training was quite challenging. He wasn’t really completely continent until seven years old.

    This was some years back now.

    Personally, my husband, who is also a medical professional, and I shed many tears of concern and frustration over this, especially once our son (third- of- four children) started school, and our daughter, who is two years younger-than him, was easily trained, day and night, by 2 1/2 yr.

    We worried, cried, prayed, and worried more.
    We tried rewarding, cajoling, praising success, etc.

    When we finally accepted that our son’s development is his, and we stopped focusing so much energy on toileting, we felt much better. It still took about a year after our acceptance until he was continent.

    Kind of like your stance with sweet Katie; we respected his (his name is Jeremiah, btw) unique neurological make- up, and STOPPED FIGHTING WITH IT.

    Once toileting was removed from the “problem list”, it became a non- issue, and we all became much happier.

    Jeremiah’s development was advanced intellectually, but very delayed in other areas.

    Yes, he wanted to please us, he wanted to wear “big boy undies”, and all that positive reinforcement rot.

    He simply wasn’t able to be toilet trained completely until he was seven years old.

    And we all survived. ☺️

    If we could do it all again, I’d like to think that we would have come to acceptance far- sooner. It made all the difference.

    God Bless you and your beautiful family.

  21. Susanna says:

    Enniagh,

    Thank you for your experienced and sage advice. We’ve been doing the “catch it by putting her on after each meal and save on diapers” pottying method for Verity starting way back as soon as she was willing and able to sit there long enough, and I’ve been completely content with that until I realized her fifth birthday is approaching and that maybe she is developmentally ready for this. But after some days of trying the best I can muster in the midst of everything else we’re doing in life, I’m coming to the conclusion that I may as well save my effort until I can truly carve out a week in which I have all my other bases covered and can completely focus on Verity, as the other experienced moms here recommended. Anything short of that is simply exhausting and frustrating both of us. And a week without anything else on the calendar and with others to cover everything else for me may not happen for years. So your comment came at the perfect time; thank you for having the courage to write it. In acceptance lieth peace. :)

    You have an unusually lovely name. :)
    Love,
    Susanna

  22. Penny says:

    During the school year, I don’t keep up with my blog reading so I’m playing summer time catch up. Love this post and all the pics. So glad Katie is doing well in her school and with bonding. And so thankful you and your family are healing after such a tragic time. Prayers for continued strength and healing.

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