The blessing of Verity

February 17th, 2014

Dearest Verity,

Four years ago, we first began to learn who you would be.

We used to think a lot more about what you would be able to do.  And we still think about that, and it is important.

But you have helped to teach us that who you are is much more important than what you can do.

Who are you now, in February of 2014?

You are the sweetest, softest little lady with the sweetest, softest little voice.

You can be stubborn, but you are always sweet-stubborn, never ugly-stubborn.

You are smarter, more discriminating, and more opinionated than I ever guessed you would be, but you display these qualities in a quiet and understated manner.

You are bashful, not a performer.  It takes time and effort to get to know you, but those who do are rewarded richly by your peaceful and affectionate spirit.

You love to help with little household tasks.

You are generally cheerful, unless we wake you up before you’re ready, or unless you have been jolted by a sudden, loud noise.  You don’t do anything loudly except cry, and then–wow!–you can be just as loud as the noise that scared you!

You can be unexpectedly original and funny!  You came up with your very own silly toddler quirks just like your older brothers and sisters did.

You take joy in learning from me as I take joy in teaching you.  When I give you my undivided attention, you open up and bloom like a little flower.  I’m so excited to begin to teach you to read in the next few years.

You are gentle and sensitive and have never deliberately hurt another person.

You are patient, never demanding.

You can be re-directed more readily than when you were younger, and are gradually gaining self-control.

From the very first day, you have needed lots of encouragement to stay engaged and keep working hard.  Right now, that is still your biggest special need.

But now that your brother Tommy is home, it seems to us like you don’t even have a disability.  We wouldn’t have a handicapped parking placard if you were our only child with a diagnosis.

I had no idea four years ago how my heart would swell with pride in your accomplishments.

I didn’t know that being with you would be so indescribably restful, restorative, nourishing, and energizing.  For me, going without Verity-time is like neglecting an opportunity to read from a favorite book, chat with a good friend, eat a special treat, or take a nap.  I have learned that you are one of the best gifts God gave me to help me do my harder work with pleasure.

You are so easy to love.

Love flows from you and into me until I am full beyond description with a huge, fierce love.  You give me far more than I have ever given you.

Never would I have guessed how your life in our family would help to grow my heart, exponentially.

Four years ago, I knew you would be a blessing, because God said children are a blessing and I took Him at His word.  But I was picturing the kind of blessing we accept from the hand of God even when it’s hard.  A blessing “in spite of,” not a blessing “because of.”

Your Down syndrome has not stolen anything from you that is more valuable than what you possess in abundance.

You, little daughter, are one of the most unmitigated joys of my life.

A priceless gift from my Father, who loves to give His children the very best.

Love,
Your privileged and thankful mama

 

We recently spent ten refreshing days in the large and comfy cabin owned by another local adoptive family. 

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It was the first time I felt like we genuinely NEEDED a vacation. 

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No internet, no cell phones, no clocks unless we sought them out.  Disconnected from the pressures of the outside world, reconnecting with each other.
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Despite a smashed rear bumper due to sliding off the unplowed driveway and a stomach bug that made its way through the family, we received the precious gift of rest.

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Waiting for Mama to put the camera down and read to us!

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Snow and more snow fell this week, and even more back home.  The power was out in our home neighborhood for three days. 

No heat, no running water.  Tommy’s feeding pump, running for fourteen hours of the day and night.  The stomach bug. 

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A neighbor friend who knew we were away told us later that she prayed and prayed that our pipes wouldn’t freeze.  And they didn’t.   

The mercy of God.

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Nice big sister~

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I love to watch your dainty little ways, Verity.
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A stack of books isn’t a nicety, it’s a necessity!

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Little Doodle suffered the stomach virus quietly.

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While she was recovering, I practiced a little wedding hair.

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Verity doesn’t understand what Auntie means, but she does understand being a mama, so that’s what she role-plays, oh so tenderly.

 

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Goodbye to the cabin…
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…and hello to the busy world of home, picking up right where we left off, with meetings and emails and details flying in many directions in the process of starting Tommy and Katie in full time school, Tommy with a full time door-to-door nurse. 

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As you can see, we came home to snow.  And then it snowed again, and then again.  Maybe again?  I’ve lost count!  In this season of life, we have decided it’s the most prudent thing to take as many snow days as we need.  <smile>

Joe offered to pay Joshua’s auto insurance this month if he keeps our property shoveled out.  Joshua gladly took him up on his offer.

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Verity wanted to be in on the action, although she hates the cold. 

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Zipper practice~

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Maybe she’ll tolerate it better over time?

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For now, she’s most content to watch the others from inside her warm house…

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…with something hot to drink.  Takes after her mama, she does.

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She knows she did something naughty!

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My beautiful girl…

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…after a very long day with our church fellowship.
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Who would not want this little one?  I love you, dear heart.

 

 

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32 Responses to “The blessing of Verity”

  1. Michaela says:

    Omg, she’s so so SO cute!!!!!!!! Thanks for sharing all those precious pictures. You are truly and inspiration to me in so many ways. Keep on keeping on!

  2. Phyllis says:

    She sounds so sweet!
    I was just coming over to ask what resources you recommend for learning to work with special needs kids. (I know you’re very busy; this question is just for whenever you have time!) Once a week I get to visit with some really special little ones in an orphanage, and I don’t know if there’s is  much that I can do to help them get ahead… except love on them. But I’d like to try. For example: I just fed a little girls with Down Syndrome. She’s completely bed-ridden and has spent her whole life tied up in a crib, so I don’t know what my feeble efforts help, but she does extreme, extreme tongue thrusting. So, I just kept “shoveling” food in, and it all kept falling out. Anyway, that’s just one example. Do you have any ideas of how can I learn to help more?

  3. Becki says:

    Oh Verity! She is absolutely beautiful. What a blessing!

  4. Linda says:

    Dear Susannah, thanks so much for sharing precious Verity with your readers! You have no idea how much I have been waiting to read this update. I am very happy that you have been able to make some changes to accommodate everyone’s needs, and hope that it gives you much needed respite. 

  5. It blesses me so much to read a bit about your precious Verity. I think this post helps me realize a little more how my special needs children bless my life. I am so happy to see how God is renewing your strength…I prayed you would eventually find the strength to keep on blogging. I know you bless many people when you share!   Love & prayers, in Jesus, Cynthia

  6. Tiffiny says:

    Linda took the words out of my mouth! Verity is so sweet and precious; her little voice just melts my heart. She looks like such a big girl now, so tall and her hair is so long! I love the fancy wedding hair; your fingers are nimble, Susanna! Best wishes for the wedding; everyone must be very excited (and busy)! And I am thinking that sending Tommy and Katie to school full time will be good for them and for your family. Thank you for sharing sweet Verity – it was the cheer I needed on this snowy grey day!

  7. Barb says:

    Verity is adorable. I just want to hug her!  I found your blog from another blog of a mom of an unexpected baby with Down Syndrome. Her words were very similar to yours – she didn’t know either what a true blessing her little one would be. Bless you all especially for hearing that screeching of Tommy! Oh my, you’ve talked about before but to hear it.  I’m also glad to read that both Tommy and Katie are going to get full time school and a nurse. It sounds like that will be a blessing to your whole family. Also loved the “wedding hair”.  Blessings to you and thanks for the update. I think of you often.

  8. Tami C says:

    Awww…. (((((((Verity!)))))))    :D    So precious.

  9. Grace says:

    Phyllis, may I?
    The most short-term answer I have is that you might try side-spoon feeding.  This is a Talk Tools technique (and if you have the time/resources/inclination, I highly recommend Sara Rosenfeld-Johnson’s and Lori Overland’s videos on feeding techniques).  Basically, you present the spoon sideways so that the edges of the spoon touch the corners of the mouth.  Then you wait.  Don’t scrape the spoon on her gums.  There is a reflex that is stimulated by touching those corners that will help her close her lips on the spoon. 
    Is there anyway you can work on straw-drinking with her?  Maybe get a honeybear (squeeze bottle with straw) to start teaching it and work up to straw drinking.  Straw drinking, correctly, builds muscle for tongue retraction. 

  10. Erika says:

    Love the letter to your beautiful daughter. Great pictures. What a sweet precious blessing your 10 days vacation in a cabin.
     

  11. Merechel says:

    I, too have been looking forward to seeing a Verity update!  She is a heart-meltingly precious little lady!  We will continue to pray for your sweet family.  :)

  12. Deanna says:

    I love this post, but mostly we love Verity!  She is a precious girl and yesterday at church the evidence of her blossoming was in full view.  She was interacting with people, came up with a baby and wanted to sit on my lap and snuggle.  She would kiss her baby and love her. Then snuggle in some more!  Ah, what a lovey girl!  
    She’s delightful.  And that plaid dress and sweater with the braids yesterday?  Well, let’s just say precious is hardly the right word but Oh MY!  Loved it on her!
    Deanna

  13. Kenna says:

    She is just beautiful!  And her little voice is so precious – loved the video!  Made me just want to hug her!

    She very much made me think of Laura in several of those photos.  I thought perhaps it was the hair, but I think she just favors her sister!

  14. Colleen says:

    What a lovely update! I read it twice. :) You have a darling little one. 

  15. Warriorbride says:

    Awww, Susanna! How I MISS you so! And how well I remember 4 years ago the fear that came upon you followed by the pure JOY of looking forward to meeting your little Verity! It has truly been awesome to watch the Father take you through this journey, and such a privilege to be a part of it.
    Little Miss Verity is just precious. Thank you for sharing her with all of us out here! :) I love you!

  16. molly b says:

    Precious sweet little Verity!  She is such a dear little girl.  I love her soft spirit.  And she is looking more and more like your big girls!  So pretty, she is.

  17. Missy says:

    Ah, sweet Verity! I loved her face when you were saying “Tommy is loud”. Her face was priceless. And hooray for school for Tommy and Katie! I think he will like it and he will learn about going out like a big boy and, best of all, coming home again! I wonder if Katie will like having her brother with her or she’ll ignore him. :) 

  18. sabrina says:

    Love this Verity post. Because of Miss Verity, we adopted Ally. We are blessed every day by extra-chromosome preciousness. So many things you said about Verity are true of Ally. She too has never intentionally hurt anyone. How many 4 year olds can you say that about?  Out of my 10 children…she’s the only one. And being repentant after being naughty…precious.

  19. Lori says:

    Verity is absolutely ADORABLE!! TY for sharing the photos and updates–despite being so incredibly busy! Your family is such a blessing not only to you all but to your readers! Love Verity’s sweet little voice and precious smile! That photo of her all dressed up for church is gorgeous! So glad you guys got a break at a cabin–I’m sure that was a most welcome respite (of sorts, lol). Sorry you had to deal with the stomach bug. God Bless!

  20. Jane says:

    That video just made my day burst with sunshine here in cloudy, rainy Oregon.  Verity is INDEED a blessing!  Thank you for sharing your love letter to her! 

  21. Melissa says:

    Oh goodness. Verity, you are a precious jewel.

  22. Jocelyn Scott says:

    Dear Susanna,   I am glad you have found a school program for Katie and Tommy.  When I commented before, I was worried about you if you didn’t get a significant break of some sort.  This should really help.  I assume this is a special program for challenged kids?  Good luck and God bless you all!  Jocelyn Scott (in Toronto, Canada).  P.S.  To go by your photos, you have even more snow than we do this winter.
     

  23. Holly D. says:

    What a cute little muffin, and dainty indeed in everything.  So glad to hear about the full-time school for Katie and Tommy.  This sounds like perfect timing and will be so helpful for them, you, and the rest of your family.  I’m sure it was a difficult decision and I think probably the right one.  You are doing what’s best for everyone and things will start looking up, I’m sure. I cannot wait to hear how Verity progresses, and Tommy and Katie. I bet Katie will love going to full-time school.  God bless

  24. Kristi says:

    Oh, I want her, I want her!!!! She’s absolutely precious.

  25. Anna T says:

    Dearest Susanna,
     I am certain that many close to you and your family have wanted to take your precious Verity “home” with them for a time because of the joy that she radiates from her inner self as many have with my precious Jacob.  I find it hard to put into words, thank you for being so eloquent in your post…so very true…we are truly blessed to have been given the privilege of the gift of a child with an 21st extra chromosome.  We have also been enjoying the “breaks” our many snow days have offered, lots of baking time and enjoying the luge that my husband made in our back yard  : ) !!   
    ((Hugs)), prayers and lots of love to you and yours!!

  26. Mary Winslow says:

    Thank you for sharing your precious Verity with us. What a blessing she is! I’m so glad you had a restful time and vacation! What an encouragement that must have been to you! The wedding will be here before you know it! Wow! So glad God spared you from frozen pipes at home, too! Great to get a peek at your last month! Love you from NH!
     

  27. Cindy says:

    Oh how dear, and yes as many said- we’ve been waiting for this update.  She is precious.  She has been used to change so many lives!  Soooo glad you could all get a vacation- AND in God’s providence miss the power outage- we had it too.  I’m glad you’re getting help with Katie and Tommy, I had been wondering.  Is this hard for you to let go or something to embrace?  Do you have to fund it with their special accounts?  I’m sure it will be a great blessing for all of you.  Which nursing agency?  I would be interested in what all they’ll be doing, days or nights?? 

  28. Marcella says:

    What a beautiful, beautiful little doll. This was so sweet it just made me cry. 

  29. Love-love-love-love, Verity is all Love!!! Thank You for sharing your gift of love! (((HUGS))) and prayers!

  30. Marci says:

    Oh, Verity is sooooo sweet!!!!  I miss “talking” with you on Momys!  We were due date buddies with Verity and my Annabelle.  Always praying for you and your wonderful family!  God’s richest blessings!  <3

  31. Kirstin says:

    Oh! She is just so precious, her little voice makes my mama’s heart go pitter pat :)

  32. Susanna says:

    Phyllis, reading your comment made the tears come to my eyes. Thank you for the awesome thing you are doing. Yes, there are many ways you can give the children real developmental help!

    A few feeding suggestions that may help with tongue thrust–

    First and most important, keep it calm and low-key and positive. If you begin to feel stressed, back off a bit and regroup. Stress will communicate itself to the children and will counter the best techniques. It’s taken years of the bad stuff to get them where they are and it will take years of the good stuff to rehabilitate them. It will take patient, loving work over time. Feeding has likely been a neglectful and even traumatic experience for the children you’re working with, and you want to begin to communicate that it can be a nurturing, comforting, connecting, pleasurable experience. Think breastfeeding for a dearly loved newborn. :)

    Can the little girl with Ds hold her head upright at all? If she’s receiving an adequate diet, that will help to give her energy to begin to make gross motor progress, and then after that, the fine motor and feeding skills that are built on the foundation of core strength. Physically, working on her core strength, and in the meantime, providing her with enough outer supports to enable her to eat with upright posture will help. If she can hold her head upright, then you can use rolled-up towels and/or blankets to prop her up as needed into an upright sitting position with her head upright. Letting her feet rest on a surface rather than dangling is also helpful.

    As for the actual feeding technique to use, one we have found to help all three of our kids with low muscle tone and feeding issues is this. Working from the front, not side, as you give her each bite, use the pointer finger of your other hand horizontally under her chin to encourage her to keep her face upright and keep her chin from sinking down onto her chest. Using a small spoon (let me know if we can send you some of these: http://www.especialneeds.com/maroon-spoons.html), feed the child with the tip of the spoon pointing directly into her mouth with the bowl of the spoon inside her mouth. Press the spoon onto her tongue as firmly as she will tolerate and wait for a response. Remember to keep her chin up so she’s looking straight ahead and keep a calm, cheerful expression on your face. :) You want her to use her muscles as much as possible to close her lips around the spoon, move the food to the back of her mouth, and swallow. Do your best to avoid simply scraping the food off the spoon using the roof of her mouth.

    It will be a messy job and each bite may be fed to her several times :), but eventually, you will begin to notice progress, as we have with our three. :)
    Many times, children with low muscle tone fed with propped bottles with large holes cut into the nipples have never developed proper lip closure or a good sucking ability. After more than two years of work on oral muscle tone, Katie is just now beginning to suck fruit and veggie purees out of pouches. Pouched like this can be used over and over again: http://www.ezsqueezees.com/

    Eventually, we hope Katie will progress to independently straw drinking the thickened fluids she’s now drinking from an open cup with some prompting and support from us. Incidentally, we wouldn’t give these pouches to our kids who don’t need the extra developmental help, but they are perfect for sucking practice for little ones with developmental challenges because you can motivate them with tastes and give them an immediate reward for their effort. When we tried the pouches with Katie, she first wouldn’t have anything to do with them, then after many months, she tolerated them but kept her mouth slack and allowed the puree to run out of her mouth, then after more months she would keep it in and pull away from the nozzle to swallow, then after more months she would close her lips around the nozzle to swallow but keep them slack otherwise, then not too long after that I began to see little attempts at sucking! From there she has progressed quickly to sucking more and more strongly and consistently! Victory!

    All three of our children with low muscle tone need/needed their liquids to be thickened to keep them from choking, spluttering, coughing, gagging, aspirating, etc. If you thicken liquids with cereal or similar foods, the liquids will be bound and not be accessible as liquids to the body. Products like Thick-it or guar gum will thicken the liquids to a consistency that the child can handle while not binding the liquids, so that they are used a liquids by the body. Does this make sense? It is vital for the children’s health that they stay well hydrated, but many times they will have difficulty swallowing thin liquids like water. There are different methods of getting sufficient liquids into children with swallowing difficulties, including thinning out thicker purees with water to the right consistency. But what worked best for our three was to thicken their liquids with Thick-it or guar gum. In Verity’s case, we thickened breast milk and gave it in a bottle and then as she grew older, from a straw cup. In Katie’s case, she went from naso-gastric tube to drinking her thickened liquids from an open cup, and as I described above, she is slowly progressing to the eventual goal of independent straw cup drinking. In Tommy’s case, we gave him thickened liquids from a bowl with a spoon when nothing else worked, and even at that, he never came close to getting a healthy amount of liquids for his body weight until he got a feeding tube. So there’s something else to think about. :)
    Many if not all children who suffered institutional neglect will have sensory issues, often to the extent that it interferes with normal daily life. For instance, Katie couldn’t stand the feeling of a toy in her hand and would push everything away with the back of her hand. Obviously, she had developed zero play skills! One simple thing you can do to help children who don’t tolerate tactile stimulation on their hands is to desensitize their palms by rubbing them on a large variety of surfaces for as long as they will tolerate it without fighting–even if you start with a fraction of a second and work up to three seconds, that’s progress. Within a few DAYS of doing this over and over again throughout the day with Katie, she began reaching out to pick up objects for the first time! Even if she then dropped them like a hot potato, she had taken the first essential steps! She has progressed from there to holding and playing with noisy/musical toys, and eventually to holding her own cup to drink and holding a spoon or fork long enough to get a bite into her mouth.

    Bless you, and keep up the good work! In God’s eyes, it is holy work that you are doing!

    Love,
    Susanna

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