Unexpected Words: Our Family’s Story~Chapter 21

Note to readers: In  my last post,  I had promised a chapter on finding a church family, and that is coming soon;  This chapter will focus on Annie’s transition to school, meeting our kids’ needs as we adjusted to our “new normal,”  and the events leading up to finding our church. As you can probably guess, God’s timing  was (and is!) perfect…

First day of kindergarten!

By September, Annie was sporting a cute pixie haircut which covered her scars. She looked not only adorable, but also “typical.” Although we had been in touch with the school throughout the summer, it was difficult for the staff to understand the nature and severity of her brain injury. Her fine motor and language skills were particularly weak. In addition, some of her behavior raised questions…and eyebrows. She would often get distracted, and sometimes wandered around the classroom during seat work. She was fairly impulsive and unable to complete her work. One afternoon, she failed to line up with her class after recess, accidentally getting in line with another group. She was punished for this, and came home in tears. When I tried to communicate with the teacher about the effects of brain injury on attention and organization, she replied curtly, “You know, Mrs. Wetherbee, it’s quite possible that you’ve been bending the rules for Annie since she’s been sick. She just needs to learn to do what she’s told.”

This indictment of our parenting stung; we had worked so hard to be sure that Annie  wasn’t spoiled in the hospital! We prompted her to say “please” and “thank you” to the medical staff, even when she could barely speak. We even assigned “chores” for her while she was there so that she would maintain a sense of responsibility. I remember thinking, “If I can just get her well enough to go home, then she’ll be in school…and THAT’s the part I know!” As a special education teacher, I felt sure I could be an effective advocate for my daughter. Clearly, the teacher, as well as the principal, did not understand anything I had tried to convey.

I shared my frustration with Dr. Bass at one of our follow-up appointments. Appalled at the teacher’s comments, she asked to attend the next  school meeting. Her presence and expertise lent credibility to our requests, and helped our allies at the school to understand how to help Annie learn. After the meeting, Dr. Bass and I went out for breakfast. While we sipped on coffee, I admitted my feelings of guilt over Annie’s illness. “I should have known. I should have seen the signs that she was struggling. If I had, I could have brought her in and we could have prevented all of this!”  Her dark eyes snapped and she immediately responded, “NO. There wasn’t any way to predict this. If you had brought her to see me before her stroke, even I wouldn’t have predicted it. I’m telling you the truth, ” she said. Her words alleviated the guilt I felt, and I thanked God again for plucking this wonderful doctor out of San Francisco and plunking her into our lives at precisely the right time.

 We weathered that kindergarten year, and enjoyed a fresh start in first grade with a teacher who not only loved her, but prayed for her as well. Annie was becoming stronger as time went on, and her MRIs showed improved circulation to her brain.  As we continued to help her regain lost skills and acquire new ones, we also became more aware of Bill’s needs.  He had some difficulty separating from me, exacerbated by my absence from him during Annie’s hospitalization. Over time, this resolved as he felt more secure, trusting that I would return.  At four years old, he was better able to express his thoughts, and we learned a bit more about his perception of the changes in our family. During an occupational therapy session one day, he sat silently, observing Annie jump into a ball pit and play with enticing toys, all designed to encourage her motor skills. He leaned over and whispered to me, “Mommy? When I’m going to have special needs, too?” From then on,  Bill participated in OT, and he reveled in every activity…because as a sibling of a child with special needs, he did, indeed, have special needs, too.

During this year, Tom and I began talking and praying about finding a church home. The church we had been attending was enormously supportive and caring to us during Annie’s illness. However, we missed belonging to a small group Bible Study, and felt that we needed to find a church with more young families. We discussed this with the pastor, and he encouraged us to find the right fit. “You’re not leaving the Church,” he said, “You’re just

Our friends, Pete and Toni Donoghue

 finding which row of the Vineyard you’re supposed to be tending!” So, with his blessing, we decided to start looking. When I told my sister about this, she said, “You know, you should find out which church that Toni Donoghue attends.” Betsy had met this person at a Bible Study in Michigan.  Toni had moved back to the Cleveland area about a year after we had moved, and Betsy said that she knew Toni was re-joining a church she loved. “Really,” Betsy urged, “You need to visit the church where that Toni Donoghue goes .”

And so we did.

Coming up in Chapter 22: Finding a church family…”Disability Ministry,  1 Corinthians 12 style”

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5 thoughts on “Unexpected Words: Our Family’s Story~Chapter 21

  1. Katie….How amazing your sister and I were in a bible study together in Ann Arbor and then she “fixed” us up as friends in Chagrin! God is so good!

    Love,
    Kumar

  2. I know that I know that I know this all happened after you left Maryland. Still. I was taken aback when Annie was purnished for getting in the wrong line and they questioned your parenting. Righteous indignation! Did they not know all that you did for my son? Did they have any idea who they were talking to? Did they know the amazing background you had. No, sadly they did not.
    I also know that I know you were in the right place at the right time – and we don’t want to go back, but I wish that I was right at your side going through all this. God provided so much for you – and I am so grateful. He is so full of grace and Glory!

  3. My dear Dava…Thank you so much… You are so wonderful. That was a really hard and painful year~Advocacy got much, much easier after that. I think I was in such a state of grief that I probably wasn’t as effective as I needed to be. So much hurt…but God was still in the middle of it.

    The new superintendent ended up getting involved and taking quite an interest in Annie (SO unusual for a sup. to do such a thing.) He really changed the course of her education through several initiatives, and followed her progress very closely. We were so blessed by him, and by a host of phenomenal teachers…I have lots of “glad-vocacy” blogs to write. I just wanted to underscore the difficulty of the “hidden disability~”that was truly on of the biggest barriers.
    We also got some really wonderful advice from a pastor’s wife (she and her husband have a son with autism.) When I told her about our experiences, she said, “I know it’s hard, but just remember…that teacher is a child of God, too.” That was really humbling, and helpful. PLUS…I had YOU for a role model~You have NO idea how often you “sat on my shoulder” and I wondered, “What would Dava do…”
    Love you!
    Katie

  4. “Mommy? When I’m going to have special needs, too?”

    Powerful – needs to be shouted from the mountain tops – to churches to be there for these children. To come along side the entire family and walk through life with them.

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