Be still, my soul: the Lord is on thy side.
Bear patiently the cross of grief or pain.
Leave to thy God to order and provide;
In every change, He faithful will remain.
Be still, my soul: thy best, thy heavenly Friend
Through thorny ways leads to a joyful end.
Be still, my soul: thy God doth undertake
To guide the future, as He has the past.
Thy hope, thy confidence let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul: the waves and winds still know
His voice Who ruled them while He dwelt below.
Be still, my soul: when dearest friends depart,
And all is darkened in the vale of tears,
Then shalt thou better know His love, His heart,
Who comes to soothe thy sorrow and thy fears.
Be still, my soul: thy Jesus can repay
From His own fullness all He takes away.
The first photo shows the older children on their way back home from the cabin after Tommy died. One of the older girls told us later that after Daniel received the phone call from Joe, they could tell something was very wrong, but he didn’t say a word. He went off by himself for several hours before finally telling them.
When they arrived home, Joe and I were away meeting with the funeral director and choosing a gravesite.
My sister came from several states away to help for several days during week one. It was a provision of God for the time when I was functioning in a fog, hardly eating, hardly sleeping, having nightmares when I did sleep…
My sister and I are similar in many ways. Although they didn’t know her, the little boys took to her readily and she provided them with a sense of familiarity and routine. What a blessing.
There were some persistent close friends who have my cell phone number and bugged me with texts and that was very good. Another provision of God.
I wanted my family to come back to our house after the burial, and again after the memorial service. One of them asked me if I resented having everyone here. But I wanted my familiar people here. I knew I could fade back when I needed to, and they would talk to each other.
A few days after the 31st, I took a few quiet minutes alone with Verity. Usually, when we ask her a question, she repeats the question and then, after a long pause, she answers it. I asked her, “Verity, where’s Tom-Tom?”
“Where’s Tom-Tom?” she repeated. I waited to see whether she had an answer, but…nothing.
“Where’s Tom-Tom?” I asked again.
“Where’s Tom-Tom?” she again repeated. She looked downward to her side and waited for me to speak again.
“We had to say, ‘Bye-bye, Tom-Tom.’ Tom-Tom went to heaven with Jesus. Now he is all better.”
Immediately, an enormous, bright smile overspread her face. She looked into my eyes and said clearly, “Tom-Tom is all better!”
We saw the effects of the trauma to one degree or another with all four of the little boys, and all four received counseling for some period of time. One of them is still receiving counseling, as I also am.
Holding precious Penny on this day brought me both joy and tears. I love this girl more than words can say. This photo was taken by her mama, my dear friend Maureen Huizinga, at Tommy’s memorial service. The dads of three wonderful adoptive families spoke at his service–Adam Boroughs, Brian Carpenter, and Paul Huizinga.
Katie and Verity were both on their potties and witnessed the trauma, although they seem to have been oblivious to the significance of what they saw. Still, they saw it, the household was in turmoil for a while, and Tom-Tom disappeared. The older kids had already been gone all week. Suddenly, people are disappearing. What is happening?
Both little girls have needed lots of extra snuggling, but for opposite reasons.
Verity likes her routine and does NOT like chaos, noise, negative emotions, or strangers, and she was angry and pushing everyone away for a while, even us. With lots of time spent holding and rocking her, she has gradually regained her normal emotional equilibrium.
Katie has had bonding and attachment issues from her first day with us, the damage caused by her history of severe, long-term neglect compounded by a hefty tendency toward indiscriminate affection that can come with Down syndrome. We call it her “double whammy.”
Once I stopped being an exciting stranger to her, after about nine months or so of being her primary caregiver, she began showing signs of mild reactive attachment disorder. Any progress she makes toward healthy bonding with me as her primary caregiver has so far been very fragile. The best way I can describe it is that it’s like pouring love into a cup with big holes in it, except she’s a lot sweeter and squishier than any cup. I have considered it progress if she simply held steady and didn’t regress.
Her attachment issues became all the more obvious when we watched Tommy relax and let go and trust and bond to me in a few short months.
Because of her significant cognitive delays, we cannot explain things to her using speech at the level other adoptive parents may be able to. She needs absolute consistency from every direction to learn appropriate social boundaries and interactions. However, it’s impossible to provide 100% consistency, and she always responds to inconsistencies by regressing. So with all the strangers coming into our home when Tommy died, some inadvertently overstepping Katie’s physical and relational boundaries, she noticeably regressed with attachment. I’ve been cocooning with her as much as possible since then, as I did during the first months after bringing her home.
For Katie, cocooning means that other than school hours (where they honor the “no physical contact for affection” rule) and when Daniel occasionally helps with her care to give me a break, it’s all Mama all the time. And after four months of cocooning, we have seen her reach milestones of bonding she has never demonstrated before, such as showing jealousy if I’m cuddling with her and then turn my attention to Verity. Now, consistently, when I walk into the room and smile at Katie, instead of looking uncomfortable as she’s done for a couple of years, she looks back at me and smiles happily. Or the red-letter day when she had equal opportunity to go to either me or one of the two wonderful para-educators who work with her every school day, and for the first time in three years CHOSE ME OVER SOMEONE ELSE. SHE FREELY CHOSE TO TURN TO ME AND PUT HER HANDS UP TO BE HELD.
Friends, only a small percentage of you know from personal experience with a profoundly-neglected child how enormous this was. We weren’t sure we would ever see this day, but I wasn’t ready to lose hope and give up. As is so common with Katie, it’s one step forward and three steps backward. We may not see the next step of progress for nine months or a year or more, but now we KNOW the potential is in there somewhere and are freshly motivated to keep doing what we’re doing to help her bond.
Shortly after explaining to Verity that Tom-Tom was all better in heaven, a friend of mine stopped by. This was a friend who suffered a similar loss a few years ago, the tragic accidental drowning of her small child on her watch. I called her late the night Tommy died, when all I could do was choke out a few words. She came the next day.
She stopped in again a couple of days later with some thoughtful gifts, including stacks of Tommy’s photos she’d had printed out.
She framed this one for us.
She could only stay a few minutes, and as soon as she left, I carried the framed photo in to the three littlest children and repeated the words I’d spoken to Verity.
“Look, Katie! Verity! Ben! Look! Tom-Tom!”
They all looked.
“We had to say, ‘Bye-bye, Tom-Tom.’ Tom-Tom went to heaven with Jesus. Now Tom-Tom is all better.”
Their reactions were immediate and distinct and emblazoned on my memory.
Ben pointed and shrieked happily in his loudest voice, “Tom-Tom! Tom-Tom! Tom-Tom!”
Katie did what she does when she is very happy and excited. She made her most delighted face with big eyes and her lips in a whistling position, reached out and flapped her hands excitedly toward Tommy’s picture, then doubled over and chortled with her most gleeful chortling sound.
Verity walked quietly over and stood nose to nose with Tommy’s photo for a long moment, then gave him a gentle kiss.
I continued to talk with them about Tommy being all better now, Tommy walking, Tommy running, Tommy dancing, Tommy talking, Tommy singing!
They didn’t mind that my voice sounded funny or that tears were running down my face. They chattered and chattered with a palpable sense of relief and joy. Someone knew what had happened to Tommy and could explain it to them. It was okay because Mama knew what happened, and she said it was all good with Tommy.
After Tommy died, the balance of our life massively shifted. My days and thoughts had revolved around Tommy from morning until night, from caring for his extensive physical, emotional and medical needs and making sure he was kept occupied, to medical appointments, filling out paperwork and making phone calls.
I parented my other children from his side for thirteen and a half months.
Tommy left a cavernous, echoing hole in my daily life. We were forced to begin to re-calibrate. The practical logistics of our household immediately became enormously easier.
And that felt tragic.
As challenging as life with Tommy was, I rebelled against the idea that anything would become easier because he, a human being, was no longer here.
I didn’t want to have time to sleep and read and exercise and write and call friends and make granola if it meant Tommy was gone.
I didn’t want breathing room; I wanted Tommy to be alive.
I want my son’s life to carry the weight of value, not the weight of being a burden.
This was Tommy’s favorite shirt. Nobody else shrieks with delight when I wear it.
After Tommy died, I was commanded to rest. In order to rest, I had to ask for help from others. It can be difficult for me to rest or to ask for help from others at the best of times. I found myself fidgeting, filling up empty space doing small, unnecessary tasks that in my non-functional state took way longer than they normally would.
I had no choice about how to spend my time for so long I wondered whether I could remember how to manage it now that I had a choice.
It helped that I still had little people who needed me. During most of Tommy’s memorial service, which took place at naptime, Ben tried to climb across laps to me, asking, “Yum-yums? Yum-yums, please?” (his word for nursing), and Katie squirmed on my lap and talked about the potty, “Pah-pah-pah-pah.”
During those first weeks after Tommy died, before school started again, I intentionally filled up time rocking Verity and Katie and listening to Scripture on CD. It bore fruit.
This is Katie ticked off. She’s trying to push her feet back into her pajama feet and her pajamas are not cooperating.
And reading her favorite book, “Baby Bear Sees Blue”~
This cheerful wreath Jane wrought lasted only one night.
We eased slowly back into school.
We had decided last spring that we would school when Katie and Tommy were in school. In the past, I might have considered that plan restrictive; now, it provides the greatest freedom. Interesting how one’s perspective can change with personal experience.
Katie enjoying Kite Day at school~
The terrible emotional pain impacted every level of my outward life and my inward being. It was so intense that for several months, simply seeing the word “Pleven” would squeeze my heart with such agony and bring such wrenching sobs it felt like I could not survive.
I was still suffering all the textbook physical and emotional effects of the trauma and had trouble focusing or keeping up with even simple things. It felt like I was trapped inside someone else’s tragic life, at the mercy of someone else’s dysfunctional body and emotions.
I might be riding down the road when the driver slammed on the brakes, something that wouldn’t ordinarily make me blink. Now, my emotions were locked on hyper-vigilant. The brakes slamming would instantly send me up into red alert shock mode, gasping for breath and heart pounding.
Or I would pull over for emergency vehicles to pass and suddenly be overwhelmed by what seemed to be an army of enormous out-of-control ambulances swirling and screaming around me, leaving me shaking and crying.
Something as ordinary as sitting down to do an activity with Verity could trigger a unexpected reaction. Seeing the trio of puzzles I’d picked up without thinking, suddenly I was shaking and my heart was racing, hearing the sirens and seeing the emergency vehicles that crowded onto our property.
Afterward, I’d be drained, trembling.
I was relieved to learn from my counselor that what I was experiencing was completely normal and to be patient while healing took place.
One Sunday, I was resting at home while most of the family was at church. After Ben lay down for his afternoon nap, I curled up on the couch with my head on my pillow, Katie playing on the floor nearby, both of us inside the play yard. In the past when I did this, she would make her slow-motion way over to me and yank on my nose, ears, or lips, forcefully shaking my head back and forth. “Ouchie, Katie, those don’t come off!”
This time was different. She slowly climbed up onto the couch, then up onto me, and perched herself on my hip. After a bit, she slid off my hip into the space next to my tummy. After another pause, she eased herself down next to me and laid her head next to mine on the pillow. And stayed there just like that for the next forty-five minutes! If you don’t know how obsessively restless Katie is, or how she still struggles with wanting to push me away if I stay in her space too long, you will fail to be properly astonished by this! It was done all on her terms, but still, it showed a progress which was lovely to behold!
Aaaaah, Kate-Kate, what a sweet gift you are~
A stray tiger cub has moved in with us for the winter. We named him Ender in hopes that he would be victorious over trespassing mice.
She has amazingly good aim and loves the bean-bag toss.
I worked with her on this pegboard activity and was meeting with some resistance. I gave her a break while I turned my attention to someone else for several minutes. When I sat down next to her again, I was astounded to see that she had gone on and put nearly a dozen pegs in correctly on her own.
She kept on with encouragement until every peg was in place.
Was it one Sunday this month I tried to go back to church?
It was too soon.
I wanted to be inconspicuous, even invisible. Instead, I felt like the black pall of death moving through the people, stilling their laughter in their throats and wiping the smiles off their faces. The situation called for more time.
And then one sunny fall Sunday, He brought me up out of the horrible pit and set my feet on a rock.
Praise to our God!!
Katie opening the tiny flaps inside this book…
…and pointing when I tell her, “Katie, point! Show me your finger!”
This fall, during the time I spent rocking the small ones, I discovered that Verity can quickly memorize every word of anything I sing to her. She will sing along with dozens of songs now in her tiny, soft voice, every word of every verse, and I’m always teaching her new ones.
She sings along with the Hidden in My Heart albums a kind, anonymous blog reader sent us many months ago, music I came to think of as Tommy’s music because of how it calmed him during his tube feedings.
Katie has outgrown baby bucket seat swings, so we hope to obtain an adaptive swing seat for her by the time warm weather comes around next year. In the meantime, swinging together face to face is a great bonding activity as long as I can tolerate the motion sickness.
Beautiful girl, I love you.
Verity needs lots of modeling and direction to engage in imaginative play, but she enjoys it when I help her through it.
This took lots of time and lots of patient directing and helping from me, but she set the table herself.
Big girl no longer needs a highchair for mealtime.
I was fascinated to discover that Katie loved her pumpkin until it had a face carved onto it…
…but Verity and Ben showed an opposite reaction. Plain pumpkins were relatively uninteresting to them, but they were completely charmed and delighted with their carved faces.
The day we went to the pumpkin patch to pick out our pumpkins, we found a gourd that was meant for Tommy. His very favorite comfort object was a green plastic pear you can see on one of his memory shelves. It was with him when he died.
Joshua, Laura, Jane, John Michael, Peter, James, Stephen, Katie, Verity, Ben, Tom-Tom~
Near the end of this month, the small and close-knit group of special needs adoptive moms met together as we do five times a year. I found myself looking around the table at each very dear face, thinking, “If I wasn’t already close to these women, I wouldn’t want to be here. I wouldn’t feel like I belonged here anymore.”
Because a friend generously offered her empty home to us, I surprised Joe by taking him to Massachusetts for a few days at the beginning of this month to celebrate his birthday. We enjoyed the Worcester Art Museum, the Public Garden and Beacon Hill in Boston, and Old Sturbridge Village in a delightfully relaxed fashion.
We weren’t too late to drink in some gorgeous fall color.
We knew we’d found the right entrance to the Public Garden when we came upon Mrs. Mallard with Jack, Kack, Lack, Mack, Nack, Ouack, Pack and Quack.
We came home with renewed respect for the work-based lifestyle of the early settlers in New England rather than the entertainment-based lifestyle that is prevalent today. What a tremendous amount of vision, sacrifice, and hard work that the early settlers invested in building a culture that went far beyond themselves and their own lifespans.
We came home all the closer as a couple, and renewed in perspective and vision for our own family. What a gift.
Shortly after coming home, I was able to discontinue the small dose of sleeping medicine I had been taking, and am now back to normal sleep, thank the Lord.
During the time Tommy was with us, because of the high level of needs of the children in our family, I became hyper-aware of every area of household logistics that were taking too much of my time away from the children and needed to be streamlined. We want to be a purposefully people-centric family, free to spend our time directly interacting with each other and the others God brings into our lives.
Of course, with no back-up help, zero margin in life, already subsisting on three to four hours of sleep each night just to (barely, sort of) keep up with basics of preserving our family culture, there wasn’t enough time to address and solve larger logistical problems.
We’re addressing them now, one at a time, as we are able.
One was to create a dedicated school room to streamline transitions between mealtime and school time and back to mealtime.
The table and chairs fold up and fit into a relatively small space.
Side benefit: It nicely draws attention away from the formula, vomit, and diarrhea stains on the carpet.
Folding the table allows us to use the space for other activities~
Having a space that is designed just for school has been unbelievably motivating to the children.
The kitchen waits, clean and quiet, for the next mealtime.
Ben no longer takes a morning nap, so he plays in this space right next to the school room. You can see the white folding tables we used before our new wooden one came.
One of the white tables was too small; two were too large, but we made them work for a few weeks.
Everything we need for our school days is in this room except the copier and laminator.
This school room has been a satisfyingly effective change in our household.
Another incredible change in my everyday logistics is this nifty new free-standing potty for Katie, using the smallest “settings” of the next larger size of the same model she uses at school. It can grow with her, so it should serve her needs for quite some time to come. Her school team had already done the trial and error of which accessories she needs–we just got the next size up. There are no words to describe how much of a difference this potty has made!
It came with a travel kit which has made Sundays and other trips away from home doable! Before this potty, my only option when traveling was to hold her over a toilet for the twenty or so minutes it takes for her to do her thing, so she and I had to disappear for about half an hour, adding in diapering and washing hands. And she’s still growing–46 pounds at her last weighing!–so physically holding her in that position for that length of time was growing increasingly more difficult. Plus, it can be easily taken apart in a couple of minutes, no tools necessary.
At home, it’s so wonderful to have the ability to move the potty out of the bathroom when necessary.
Plus, now that she’s so big, strong, and restless, her old potty no longer provided enough restraint to prevent access and messes. The new one is super easy to clean and can also be moved away from items like curtains and towels to prevent her pulling them down.
I am so thankful for this potty!!
Sweetie-girl loves it, too!!
Overall, Verity cooperates well with the preschool activities I do with her; however, she has not made as much progress as she could have over the past two years while I had very little time to work with her. She also regressed behaviorally during the same time period, which limits her ability to learn even more. We decided to have her assessed for a rigorous neurodevelopmental program and are looking forward to using that as the backbone of her home education program beginning in February.
Several months after Tommy’s death, I found that my priorities have changed. Anything I do that doesn’t come up to the significance of caring for Tommy seems flat, not worth my time. If I purposely gave something up to care for him, I gave it up because caring for him was more important than doing those things. Caring for him was the privilege of a lifetime. He was worth sacrificing for, and I can’t say that about a lot of activities that might otherwise rush in and fill the void.
Joe and I are more intentional than we used to be, and we hope it stays that way.
Verity’s scissors skills are coming right along.
Verity and I love this activity we’ve done together multiple times. I take her pointer finger and trace around her face, then trace the same shape on her paper, then help her draw the shape on the paper, all the while talking about what she’s doing. I repeat this process for the rest of her features, then help her write her name.
I’ve helped her write her name several times each school day for a long time; this was the first time she wrote it herself without my hand on hers. I had to talk her through each stroke using the same verbal prompts I use when helping her hand over hand. She can spell her name verbally, “V-E-R-I-T-Y.”
Can you imagine how proud of her I was as I watched her write this? I thought my heart would burst. She also does well with memorized sight words on days she’s engaged and cooperative.
For me, Thanksgiving Day marked the beginning of a fresh wave of grieving that’s only partly subsided.
It seems that I’m in a season of experiencing the enormity of our loss all over again.
My emotions lie just under the surface and it doesn’t take much to trigger them.
I’m still not functioning as I used to. I can’t seem to stay on top of things or multitask like I once did. I phase out and wear out quickly.
I have a to-do list; emails and blogging aren’t even on the list.
Thanksgiving Day took us off our guard. We weren’t as purposeful about integrating conversation about Tommy as we want to be at Christmastime. I was braced for grief to come from one direction, but instead it came from another, and we weren’t prepared. It was a rookie mistake.
My biggest question for everyone in our family right now is this.
“How did Tommy’s life impact you in a positive way?”
I need to hear it.
There have been three milestones for me recently. All three I thought I’d never be able to do again.
The first was caring for a little boy in our home for several hours; I had offered without realizing its significance and only panicked a little afterwards.
The second was a long phone conversation with a prospective adoptive mother who had lots of questions. Again, I didn’t realize its significance as a milestone until the end of our conversation.
The third was the opportunity for Joe and me to tell our story at the Christmas party of our counseling agency. It was very hard for me to do, but not because of the audience. The opportunity was tailor-made for us–a small, engaged, empathetic, safe, and thoroughly Christian group. It’s just about the only group I can imagine telling the story to right now, as it ends in such a very heavy place, and we can’t wrap it all up in some pretty way.
It’s as if we had the privilege of standing next to God and watching Him paint a breathtakingly magnificent masterpiece.
We’re left standing in front of this once-stunning painting that has been defaced with messy scribbles of heavy, black permanent marker.
“Thy hope, thy confidence let nothing shake;
All now mysterious shall be bright at last.”
We’re still in the “all now mysterious” part.
And finding that “peace that passes understanding” has no meaning until you find yourself in circumstances that make no sense at all.
What a tangled, confused, broken mess of grief and trauma.
I had tragically lost not only my little, vulnerable, one-of-a-kind boy to a preventable accident on my watch,
I had lost my identity as a successful adoptive mom to a severely disabled child who had survived for sixteen years on the top floor of Pleven,
I had lost my hope of someday being allowed the privilege of bringing more treasures like Tommy and Katie home and caring for them,
I had lost the joy of telling the story of what God had done for the children of Pleven, a story I’ve told hundreds of times to anyone who would listen,
and I had lost the calling of bold advocacy for orphans with special needs that I had passionately embraced until it had become part of my very heartbeat.
In my own mind, I had become an incompetent, disqualified failure. A failure as a mom, as an adoptive mom, as a mom of a severely disabled child, a failure as a human being.
About two and a half months after Tom-Tom died, God drew back the dark clouds and allowed me to see the loving face of Jesus again. Knowing He is here–Emmanuel, God with us!–and that I am loved and secure in Him hasn’t taken the pain away, but it has taken the terrible, oppressive blackness away.
Like a good surgeon, God wounded us in order to heal far more than His original incision. That’s where we are now. Painful, exhausting, sad, almost unbearably so at times, but hopeful.
We can see God patiently working over us, cleaning out each festering area, pouring His truth into the hurting places, binding them up, making them new.
Making us more like Jesus.
And we are thankful.
We want to end with a quote by Oswald Chambers that has been powerful for us.
“We have the idea that God rewards us for our faith, and it may be so in the initial stages. But we do not earn anything through faith— faith brings us into the right relationship with God and gives Him His opportunity to work. Yet God frequently has to knock the bottom out of your experience as His saint to get you in direct contact with Himself. God wants you to understand that it is a life of faith, not a life of emotional enjoyment of His blessings.
The beginning of your life of faith was very narrow and intense, centered around a small amount of experience that had as much emotion as faith in it, and it was full of light and sweetness.
Then God withdrew His conscious blessings to teach you to “walk by faith.” And you are worth much more to Him now than you were in your days of conscious delight with your thrilling testimony.
Faith by its very nature must be tested and tried. And the real trial of faith is not that we find it difficult to trust God, but that God’s character must be proven as trustworthy in our own minds. Faith being worked out into reality must experience times of unbroken isolation.
Never confuse the trial of faith with the ordinary discipline of life, because a great deal of what we call the trial of faith is the inevitable result of being alive. Faith, as the Bible teaches it, is faith in God coming against everything that contradicts Him— a faith that says, “I will remain true to God’s character whatever He may do.” The highest and the greatest expression of faith in the whole Bible is— “Though He slay me, yet will I trust Him.”
~The Trial of Faith, Oswald Chambers