So much has happened since I last brought you up to date, my friends, and there are big, thrilling plans on our horizon.
As you will observe in the photos, videos, and commentary to come, with the exception of one very sad day, spirits have been running high around here over the past weeks.
We’re identifying areas of life that need remedial work and tackling them with a will.
We’re learning how to be a happy and flourishing family of a growing child with severe physical, cognitive and behavioral disabilities. Learning which supports we need to enable the flourishing to happen.
We are more nurturing of one another and more of a cohesive team than we have ever been before.
We’ve had little glimpses of incredible maturity developing among our older children, and that is so good to see.
We’re not all the way there yet, friends. We haven’t yet solved the problem of Sundays, or of Sleep and Exercise for Mom. It can take a long time to put adequate supports in place for families living with special needs. But overall, we’re well on our way, and it is a joyous thing.
One of our older children summed it up recently by stating simply, “I like being the family we are now.”
All praise to God, who gives His people…
“…beauty for ashes,
The oil of joy for mourning,
The garment of praise for the spirit of heaviness;
That they may be called trees of righteousness,
The planting of the Lord, that He may be glorified.”
Without further ado, some favorite photos from the past several months~
Going back to the last day of February, which you will recall was the day of Joseph and Lindsay’s wedding rehearsal, behold, the parents of the groom…
…with their little baby bean.
A few favorite shots from the auspicious day~
Leftover wedding bouquets graced our home for a few days.
Little Miss Verity~
An inspiration from the time I spent in the hospital with Tommy~
Caregiver cheat sheets, ever changing~
The line-up looks a bit different now than it did back then~
This video is a long one, but it will be fun to watch if you are interested in seeing Tommy and Katie during a quiet Sunday supper at home.
John Michael, eight years old, wanted to work straight through lunch.
We haven’t been able to find a dental surgeon who’s willing to do as much of Tommy’s dental work as possible while he has severe osteoporosis. Waiting for oral surgery hasn’t been a problem for Katie, since her issues are all cosmetic, but Tommy’s disaster-area mouth is another story. We’re pushing for this as hard as we can, and our family dentist is helping as best he can.
For the next month, we’ll be off school while Katie and Tommy finish off their year. I’ve already begun using this breathing room to get caught up and maybe even to work ahead in some areas. Then we’re trying to pack in as much medical stuff as we can between family vacation, Katie’s extended school year days/our summer homeschooling days, and the beginning of the next school year. We’re going to have to be more flexible with our homeschooling schedule than we had been previously–hitting the books hard on the days when both Katie and Tommy are in school and planning lighter days when Tommy’s home.
Did you know that I can read to my little ones and wipe off board books at the same time? Oh the multi-tasking I’ve learned to do as the mother of many small people!
My creative husband came up with yet another space-saving solution when it was time for Ben to move in with his big brothers.
Talking with Katie about her upcoming birthday party as I get her ready for school~
Katie, where’s your bus?
Priceless reaction upon finding out that she now has her own keyboard!
Clear plastic shower curtain liner, the glorious invention that allows me to keep an eye on the children while preventing them from chucking water and toys across the room.
Tommy is awakened early from a sound sleep, washed, dressed, and waiting for his new nurse so he can attend his first day of school. Hmmm, doesn’t look too thrilled so far!
What’s this all about, Mom?
Within the first thirty seconds of meeting Tommy’s teacher for the first time, I could see that she was perfect for him.
And I do mean PERFECT.
His teacher and I like each other. His nurse and I like each other. His teacher and his nurse like each other. We all love Tommy…
…and Tommy loves school. It’s working, friends!
Bye-bye, Tom-Tom! I love you!
Everyone loves working with our happy boy!
Katie is beginning to use gentle hands with Tikky-Tac instead of shoving her away automatically as soon as she comes within range.
I sent the camera to school with Tommy’s nurse several times. She also gives me a thorough run-down of his day after they get back off the bus.
He’s gone from home for six hours each school day, and so far he has not had a full school week due to staffing problems with the nursing agency.
I miss him when he’s gone, and keep thinking I hear him at home, like an amputee experiencing phantom feelings in the missing limb.
I’ve taught him, like I taught all my babies, to place an object into my hand when I hold it out, palm upright, and ask, “May I have it, please?” It took about nine months, but he got it!
Katie wasn’t so sure she wanted to share her bus with Tommy at first, but now I can explain the routine to her as I get her ready to go, and she understands when I tell her it’s a day…
…that Tommy will get on his coat, and go outside, and get on the bus, and go to school…
…and that she will wait on the rocking chair for Mama while Mama carries Tommy to the bus, until it’s KATIE’S TURN!!
Meanwhile, a bleary-eyed, pajama-clad Verity eats her breakfast and drinks her ginkgo juice.
More practice using gentle hands~
To give you a visual of how much Katie has grown during this past year…the photo below was taken almost exactly a year before those above.
Stephen’s turn to accompany me on the monthly run to duPont for Tommy’s meds.
I try to feed my traveling companions well. <smile>
Verity is so fun to teach.
Stephen, age five, is progressing nicely with reading.
Doodle likes to sing along with the alphabet song.
She has a deep and abiding love for Tikky-Tac, and Tikky-Tac has come to trust her in return.
We want her to continue to gain strength and endurance as well as gross motor skills.
Living on the side of a hill is good for Verity; it makes her work all the harder to get where she needs to go.
Oops! You took a tumble! Say, “I’m okay!” Stand up and keep walking, Verity!
Only another parent with a child who spent the first three years in physical therapy will truly appreciate how I feel when I see all Verity has learned to do by herself! She has worked so hard and come so far just within the past year!
Back up the hill she trudges.
Work so hard, Verity! You can do it!
“I can do it!” says Verity.
Back down the hill again, this time to the swingset.
Because Mama is going to give you a lesson in pumping your legs when you swing!
Sand table time! Yay hurray!
Tommy loves his Mama-squeezes, and in return he giggles, croons, and pats my back.
What a sweet boy, Tom-Tom. Mama loooooves you.
I finally got my act together to try a nifty idea I read a long time ago on the blog of another T21 mom.
And commenced to give Verity her first real reading lesson. She loved it, although a good part of the time you might have thought she wasn’t paying very close attention.
After half an hour or forty-five minutes or so, it occurred to me to grab the camera and videotape, and am I ever glad I did! I would have doubted my eyes and ears and memory if it hadn’t been captured for posterity.
Over the past couple of months, Tommy has made incredible progress with speech.
During all his years of neglect, no sound he made had any impact on his environment; his brain stopped connecting his own vocalizations with the outside world. He came home with a variety of vocal expressions that gave us a clue as to how he was feeling, but were not purposeful communications, and in fact, he showed no sign that he was aware that he was making any sounds at all. When we copied him, for instance, we received a blank, uncomprehending stare in return.
He has attempted to purposefully communicate with us in several ways recently.
When he receives lots of prompting and is focused, he can now sign “all done” when he’s finished eating. He’s demonstrated this a couple of dozen times now, not consistently.
He has begun to purposefully mimic sounds, from me saying, “Uh huh,” to his own fussing sounds (with a big smile on his face), to noises the other children in his classroom make. This is a big step toward vocal awareness, so exciting to see!
He now fusses when he wants me to get him down from standing. He waits patiently until he hears or sees me coming, then fusses to let me know he is d.o.n.e.
He has begun to say, “Mama,” and most of the time, it seems that he is saying it in connection with me. For instance, when I check in on him before I go to bed, if he wakes up, he’ll give his infectious giggle and say, “Mama.”
He passed the ten pound weight gain mark in March, and seems to be growing again right now, despite a doctor-recommended two week break from anti-nausea meds, which means some vomiting again.
He got home from school before we were finished with our BiblioPlan map activity, so he joined us at the table.
Stephen and Tommy are friends.
Feeding her dolly breakfast and ginkgo juice.
Little boys, sunshine, bare feet, a sandbox~
Tommy had to get used to the seesaw before he relaxed and felt sure he would not fall.
Now it’s one of his favorite outdoor activities!
Mama went a little crazy with the Sharpie again, this time to label, label, label for Verity. It was a delight to see how thrilled she was to find the names of everything appearing before her eyes!
Watch Tommy copy Ben.
My boy has a million-dollar smile.
Benjamin turns one year old.
We can’t imagine our family without this funny, determined, precocious, confident, affectionate, loud miniature being in it.
These bird’s nests fell out of their respective trees during a hard rainstorm.
Laura rigged up this cute piggyback swing.
We have a temporary moat in front of our castle when the water table is high. Oh, those children? Just some local urchins…
Joshua’s asparagus planting has provided us with tender, juicy, sweet stalks this year. He is working full time for a local landscaping business when the weather permits, and has a temporary fulltime position on the table from another local employer, so he fits in his outdoor work here in the evenings now.
This is what our lunch table looked like a couple of Fridays ago. The place was deserted, but Verity and I loved having each other all to ourselves for a little while. Well, other than the 1 1/2 hours’ worth of phone calls making medical and other appointments…
Katie and Tommy were in school, Jane and Laura were off reading somewhere, Ben was sleeping, the older guys were all at work, and the four little boys were with some friends at the park for Fun Friday!
Our beloved pastor was married for the first time in a simple Sunday evening ceremony.
What a privilege to witness that special occasion…
…along with other friends and family who love him and his beautiful bride.
We learned the hard way that it would have been a better idea to plan for Tommy to stay home with a sitter.
Small and crowded venue…very overstimulated and shrieking child…chilly and windy outdoors…
Joe ended up running Tommy and my younger sister back home to stay for the remainder of the evening.
If the weather and schedule permit, we like to go for a walk when Tommy gets off the bus. He arrives home an hour earlier than Katie does.
This photo and the next one were taken by Mindy Walls, a starving college student and temporarily adopted daughter who’s living with us this summer. We’re loving having her with us–she tolerates our crazy family with amazing aplomb–and hope to fatten her up a bit before she leaves us in the fall. And we’re already benefitting from having a student from a photography school living here! I’m going to identify her photos with her name from here on out.
Note: Mindy is not the young woman who offered to come and help us; she’s a local girl who is part of our church. After Tommy started school, we would have had a bad conscience asking someone to invest that much in us when we were no longer desperate for help. A couple of weeks before Mindy arrived, we heard that she had no place to stay for the summer and we knew she’d be a good fit. Our sis-in-law helped turn the downstairs of our playroom into a temporary bedroom.
I wasn’t able to get him to focus on the horse. Hmmmm, there’s a goal to work toward…
It’s become obvious to us that it’s time to move forward with plans to add on to the house, primarily to provide a first floor bedroom for Tommy. We plan to go ahead and make it a full addition, with basement and second floor. We’ll have to cut back into the hill behind the house.
This photo shows you the view where I carry first Tommy, then Katie, down the front stairs, across the yard and down the little hill to the spot where the bus stops, right there in front of Daniel’s car. And then back up again when they come home. And then sometimes there are other trips up and down the hill, either in front of or behind the house. Rain or shine, slippery or dry.
Our whole current plan hinges on my physical ability to continue to do this lifting and carrying. A recent wrist injury alerted us to the urgency of moving ahead with our big plans rather than hoping I’m able to continue throughout the next school year as Tommy continues to grow heavier and more active.
As you can imagine, we’re thrilled about this project, and ideas are flying every which way!
As the end of the homeschooling year came in sight, we all gravitated outdoors more and more.
Now we can tell which is which, if we want to. <grin>
These two guys were the same size last summer. Tommy’s growing faster than Stephen is.
This little table is just the right size for them this summer, and they’re so delighted with it!
Many of the children pitched in to help spread the mulch. Ellie, Joshua’s gorgeous, laughing Golden Retriever puppy, is right in on the action as usual.
The girlies are waiting for their annual Down syndrome bloodwork. Both of them did so well, and were both smiling again shortly after their little ouches.
Meanwhile, Mindy stayed with the rest of the children out in duPont’s playground. No, she’s not our new household slave–she had a free choice about whether to come along with us that day–but what a tremendous help it was to be able to allow the children to play outside rather than tagging along to the appointments.
Seeing this platform swing put it to the top of my wish list for Tom-Tom. Actually, the wish list had only one thing on it–an adaptive swing seat. But one of these platform swings would stay useful no matter how heavy he grows in the future. Right now, the way he gets to swing at home is on my lap, which we both enjoy, but of course that situation won’t last, either.
An online friend blessed us with this fancy feeding chair when we brought Katie home, and it’s been perfect for Tommy’s needs! It tilts, folds up, swivels on a dime…he can even sit down near the toys while getting his tube feeding.
We’re going to try to find little Doodle a broom the right size for her by the time her birthday gets here. She loves that old thing, but it can be a weapon in her hands!
James is getting over his shyness with Tommy, little by little.
Mindy Walls herself. We love you, Mindy!
…to the finish line!
Jane’s taking video with a camera inside a ziplock bag. It worked better than you might guess.
Ellie, get off the road!
Ellie, get off the road!
Ellie, get off the road!
Ellie, get off the road!
Ellie, AKA swamp monster, wouldn’t stop going on the road, so Joshua had to tie her back up.
It was another fine day for a walk when Tommy got home from school last Friday. Beautiful day, last day of the Mussers’ homeschooling year 2013-2014.
Hey kids, let’s go up to the bridge and back before Katie gets home!
To the bridge…
We arrived home in time to get Katie off the bus. I pushed her on the swing for about forty-five minutes and was walking her up the front steps to the porch when a tractor trailer turned into our road. Peter, Stephen, Joshua and I all watched in helpless horror as Ellie ran into the road just in front of it. I hope never again to witness traumatic scenes like those that followed as if in slow motion. My yelling to Joshua, the truck driver pulling over, great sobs forcing their way out of me at the sight of Ellie’s injuries, my son bending by my side over his beloved pet, the neighbors gathering around us to be of help, the drive to the vet, praying all the way that she would be in shock and not feel pain, the words of the vet, euthanasia…
Joshua dug a deep hole in a special spot up in the woods and placed a three hundred pound stone over her grave. It was a hard day, friends, and there’s an empty place here now where there used to be a happy dog surrounded by happy children.
Ben’s still nursing full speed ahead as he enters his second year. As I contemplate his first year, I think this surely must go down as one of the most marvelous, inexplicable mysteries of my life.
This is progress. She still removes pillowcases, but she no longer throws the pillows out of her bed and she now puts her head on them to sleep!
Tommy, I’m going to have to put you down and give Katie a push!
Tommy doesn’t mind.
Tommy’s turn again!
Katie, give me ten!
Thank you for reading, friends, and for continuing to care about our family! Please stay tuned over the next weeks as I share how the Pleven orphanage is in urgent need of financial help in order to provide babas and therapists for the children, who currently have none. Dr. Georgieva has come to us for help, and I’m praying that we can rise up together and get the job done.