Trusting in a Treatment

“I assume you have the Botox?” the secretary asked.

My heart jumped into my throat. Already my anxiety level had been high. I had been told to expect that the treatment would be painful and possibly cause a vicious migraine after the treatment. So I had cleared my schedule and found someone to care for Ty so my Mom could drive me to the appointment just in case I couldn’t drive home.

“I didn’t know I had to bring the Botox,” I said as calmly as I could. Meanwhile my mind was racing. I had gotten paperwork from the migraine clinic when I left. Had I missed the part about bringing the Botox with me? Was this all my fault?

“Well,” said the secretary impatiently, “clearly we won’t be able to do the treatment today but I’ll talk to the doctor.”

I sank down into a chair in the waiting area and frantically pulled up all the emails and information from the clinic and the neurologist’s office. No prescription for Botox! I went back to the window and showed the secretary but she was unmoved. I sank back down into the chair devastated and cried.

The idea of using Botox as a preventative therapy for my migraines had been around for awhile. I knew a friend who had success with the treatment. When I first met with Dr Walker at the hospital, he was very confident Botox could help me but wanted to finish the course of drugs we were on first. When the preventative drugs failed, Botox was recommended but they weren’t sure how soon they could get me in. When I received the call that I could begin Botox in March, I was elated. I mean, who doesn’t want 31 shots to the head!?

All my hopes centered on the Botox. “If only the Botox works, Spring Break will be easier...” I tried to keep my expectations realistic. Even though the doctors were aiming for higher, I would be content with 50% improvement. “If only I can just hold on until the treatment, I might finally get some relief..”

The secretary returned from talking to the doctor and her demeanor had changed. When I saw Dr. Medvedev he explained that I was the first patient that had come over from the migraine clinic and they were still ironing out the process. That was why I hadn’t been told to bring the Botox. He assured me that he would do the procedure anyway. The procedure itself wasn’t nearly as bad as I expected. All that was left was to wait 10-14 days for us to know if this round would work. In the meantime, I had a very smooth brow and I couldn’t arch my eyebrows properly!

It was in the wait time, I started to realize how I was putting too much trust in the treatment to work. The mere possibility that the treatment might have been delayed brought me to tears. As the days passed and my migraines were the same, I had to consider, what would happen if the treatment did not work? I’d put so much hope and energy into this solution but it might still let me down.

Is there something in your life you are straining towards to make life better? A relationship to mend? A change of job or finances? A new doctor or a new treatment? What happens if that one thing doesn’t work? What then?

On Day 10, the first day the treatment could take effect, I realized I couldn’t keep going like this. I had to find a way to be okay whether this treatment worked or not. I started reading in Philippians when Paul is prison and with the very real possibility that his life really might end. He says,

“It is my eager expectation and hope that I will not be put to shame in any way, but that by my speaking with all boldness, Christ will be exalted now as always in my body whether by life or by death.” Philippians 1:18-26.

Paul’s eager expectation and hope did not rest on which way his life would go. He was at peace with either option so long as people would see Christ in Him. He wasn’t even sure which option he preferred! So I asked myself, “What if God can be exalted more through my illness at this time? Can I live with that?” If I’m honest, I would say that unlike Paul, I still have a preference. I know I would choose health over illness. Even though the first round hasn’t worked, I will try a higher dosage of Botox in June. I am also seeing a kinesiologist to work on my neck and shoulders.  But if God can accomplish something in and through my migraines in the meantime, then I can accept that. God is still God whether I am healed or not. He gives me enough strength for every day. He is faithful and reliable. Unlike a treatment, He never lets me down.

The Gift of Limitations

“I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride and with good cheer, these limitations that cut me down to size-abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.”

2 Corinthians 12:7-10, The Message

Most gifts are exciting. I think of my kids. Their birthdays are coming up this summer and they are already planning ahead. They are continually thinking about what they want to get for the birthday, particularly my oldest. He is constantly making requests and then changing his mind a week later! He’s excited because although he doesn’t yet know exactly what he’s going to get, he knows it’s going to be good. Imagine if today, a gift showed up unexpectedly on your kitchen table. You don’t know who it came from but you are surprised and excited. You open it up and what is inside? Limitations!! Yay…

It’s hard to see limitations as a gift. I am someone who has always prided herself on getting a lot done in any given day. As a teacher, I strove to be efficient, never bringing work home. I kept the apartment definitely not spotless, but organized. It made me feel good to have something to show for my day.  Adopting three kids made it harder to keep up. Even worse, the things I actually DID get done, were quickly UN-done. Still I kept making my lists and feeling like I could somehow do it all.

Then God gave me the gift of limitations. At first, I kept trying to keep up with my lists when the migraines started. I would push myself to do what I would usually do, no matter how I was feeling, but I couldn’t do it. My Mom and Joel took over much of the chores and childcare, while I lay in bed. The more others took on for me the worse I felt at the end of the day. When I would ask, “What did I get done today?” The answer was “Not much”. I started feeling like I had little to contribute. If I wasn’t the one looking after the household jobs, what was my role as wife and mother? It was extremely humbling to have to let go and let others do all the tasks I felt were so important…or even worse, to leave them undone (shudder).

So how can limitations be a gift? To be clear, I don’t think that God expects us to love this gift. Paul, wrote the passage, tried to return his gift, begging God to take it back three times. When he stopped worrying and stressing about what he couldn’t do, he began to appreciate the gift. Why? Because instead of trying to do everything in his own strength, he let God take over. For me, it means not finding my worth in my to-do list. God has given me the gift of a new focus. Instead of asking what I got done I am asking:  “Who did I connect with today?” I can connect with people even in my bed. I’ve had some great talks with my kids on my bed when they come home from school and tell me about their days. I take time to play a game of backgammon with my Mom when she comes over to help. I can pray for people, or even simply call them on the phone from my room.

The fact is we all have limitations. There is a limit to what we can do and accomplish. There is always more to do. The only one who has no limitations is God himself. That’s what makes him God and me not. On my healthiest days, I never finished everything. I only thought I could.

What are the limitations God has given you? Could it be that those limitations are God’s way of showing you that you need Him?

The limitations of illness are a gift to me because I am no longer under the illusion that I can do it all. I need help. I need God. In Him, I find my strength to get through the day when I don’t feel like I can even get out of bed. In Him, I can be free from the burden of my own expectations. In Him, my day can have purpose and meaning even if I don’t check a single thing off my list. 

 

Quality of Life

I’ve been thinking a lot about the term “quality of life”. When people seek to understand how having migraines affects me they often talk about the quality of life. I know what they are talking about it, however, it makes me a little bit uncomfortable. Is the quality of my life dependent on my illness and pain? Can my life still have “quality” if I’m in pain? It’s made me think: by what do we measure our quality of life? Is it measured by our health? Is it measured by our relationships? By our jobs in the workplace or out of the home? What happens to our quality of life if these things fall apart?

I was sitting in the waiting room of the migraine clinic. After my trip to the hospital, I had gone through two different preventative drugs to see if they could control my migraines. The first was an anti-depressant, and it made me super tired and upset my stomach. It did nothing to reduce the migraines. So we decreased that medication and tried another one, also to no effect. My young Dr. Walker had “texted” (modern medicine!) a friend of his and was able to get me into the migraine clinic to see what else could be done. So here I was, awaiting my appointment to see the team. I would meet with a pharmacist, physician, neurologist and physiotherapist. As I sat feeling a mixture of hope and anxiety, I thought of the verse I had been memorizing:

So we do not lose heart. Even though our outer nature is wasting away, our inner nature is being renewed day by day. For this slight and momentary affliction is preparing us for an eternal weight of glory beyond all measure. 2 Cor 16-17

It is easy for me to relate to the idea of our outer nature “wasting away”. After all, that’s what landed me in the migraine clinic in the first place! I don’t have the strength and energy to do many of the things I used to think were essential. However, if you think about it, everyone of us is “wasting away”. Every day we are getting older. Our bodies are non-renewable resources no matter how well we take care of ourselves. What is amazing, though, is that God promises that inwardly we can be renewed every single day. Another version of this verse says, “not a day goes by without his unfolding grace”. That means that no matter what is happening, however bad my pain is, God is giving me new strength to deal with it and grow through it. Just getting to see this team of specialists who were going to work together to help me was another example of God’s unfolding grace in my story.

This verse also comforts me because it reminds me that in the grand scheme of things, this pain and affliction is momentary. It doesn’t feel momentary. Don’t get me wrong. There are many times when I wake up sick in the night or when the pain feels like more than I can bear that I feel discouraged. But if I can zoom out the camera lens, I believe there are better things ahead. In the big picture, I see my amazing husband who cares for me in my illness. I remember how after 6 years of trying to have kids, God blessed us with a house full all at once. I remind myself that no matter what happens, or how life falls apart I have hope that one day God will take all my pain away. With all that in mind, I can say confidently that the quality of my life is rich and full… even if it has pain in it.

 

Treasures in the Darkness

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I spend a lot of time in the dark. So much so that my husband has nicknamed me his “Creature of Darkness” and “Vampire Wife”. As soon as I come into my room my sweet kids close curtains for me and turn down the lights. One of the side effects of migraines is photophobia. Light is intensified making the migraine pain worse. For me, it feels like being in one those movies where someone is sitting in a dark room waiting to be interrogated. The interrogators come in, turn on blinding light directly into the face of the cringing victim. That is how regular light feels like to me these days. Relief comes when I go into my room, shut the curtains, and put on an eye mask.

Being in the dark so much can begin to feel like living in a void. It can be depressing to shut out the sunshine, close the curtains on life and activity and go to bed. Yet even in the darkness I know I am not alone. One morning, I read this verse and it was like it jumped off the page and started echoing around in my heart.

I will give you the treasure of darkness,

And hidden wealth of secret places

So that you may know that it is I, the Lord.

Isaiah 45:3

How can you find treasure in the dark? When there is no light the treasure could be right there in front of you, yet you wouldn’t be able to find it. In order to find treasure you need a guide. After reading this verse, I began a bit of an experiment. I asked God to show me the treasure hidden on a dark day. That morning, I was in bed so Joel got up to get the kids ready for school. I could hear them noisily eating breakfast, getting into each other’s space…the usual. Normally, I would be out there directing traffic, hurrying them along, reminding them a hundred times to brush their teeth. I couldn’t do all that. One by one, as they were ready to go to school they came in and sat on my bed. They took turns asking out Google “Alexa” device crazy questions. Kaden asked Alexa if she was an alien and Alexa replied, “The truth is out there…” They all burst into laughter. Instead of racing around in before school tizzy, we all just sat on my bed laughing and snuggling. My first treasure in the darkness.

Another day, when I was in a lot of pain, and Ty came up into my bed. He brought his blankie with him, climbed in the bed and put his blanket over my shoulders. He said, “I tuck you up, Mommy.” Then he kissed me on the shoulder. A treasure in the darkness. One day, Kenzie was home sick with a bad cough. I wasn’t feeling well either. So we hung out on her bed and I taught her how to play backgammon. It was really special because I grew up playing backgammon with my Mom and Grandma. Now, in the middle of a school day, I got to teach my daughter how to play. A treasure in the darkness. 

Treasures in the darkness are really hard to find. You  have to look hard for them and ask God to show you where they are. It’s easy to find stones…rocks of frustration, self-pity, pain, and frustration.  You can find those without even trying. However, if you are in a season of darkness, why not join me on this treasure hunt. Ask God to show you where the treasures are that you can only find in the dark. I promise you, they really are there.

Top Ten Reasons Why I’m Glad I’m not in the Hospital!

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“You should go to the hospital, like right now,” said the 411 nurse.

My Mom had called the nurse’s help line after a particularly bad migraine day. I had had bad pain days before but what set this day apart was the vomiting. I couldn’t keep even a mouthful of water down and it was getting worse.

Hedging, I replied, “Well, I could wait and see if I keep anything down for half an hour…”

“No,” she said, “you should go now.”

Going to the hospital was the last thing I wanted to do. It was bad enough to feel wretched in the dark of my room in my comfortable bed. Going to the hospital meant getting up, riding in a bumpy car, sitting up in uncomfortable chairs with fluorescent lighting and waiting for who knows how long. It marked a new low point. Yet it seemed I didn’t have a choice. With Joel out with the kids, my Mom bundled me up as best as she could, and we headed to Royal Columbian.

During my evening at emergency, I was very aware of God’s presence. I saw His grace through the nurse who tended me. She got migraines herself and shared her story. I saw God’s love through my Mom and Joel who took turns sitting with me and looking after my kids. After about an hour, I was taken into an exam room and things started to improve. They gave me an IV for fluids and a migraine cocktail (I don’t drink, but that was one cocktail I really appreciated! :P) I was profoundly relieved when they sent me home. The next day, I made a list of the things I was thankful for upon coming home. It’s so easy to take simple things for granted, but being at the hospital was a jarring wake up call.

10. Sleeping in my own bed.

9. Being in clothes that don’t tie up in the back.

8. Blankets that are actually warm.

7. Eating dinner at home with my own family.

6. Privacy!

5. Drinking water out of a cup rather than through an IV.

4. Now when I have a bad day, I can say, “At least I’m not in the hospital!”

3. My own bathroom without scary hospital germs.

2. Making a car jail with Ty out of styrofoam.

1. Tucking my babies up in their beds at night.

Aside from the immediate relief of the pain on that night, God brought good out of my trip to the hospital. I was fast tracked to the Rapid Access Neurology clinic. There I met my new neurologist Dr. Walker. His kindness and confidence that he could help brought me renewed hope. He was also able to get me in to a migraine clinic where I was assessed by a team of doctors. This, in turn, led to my first Botox appointment this past Friday. I found out that if I hadn’t been referred through the hospital, the waiting list would have been 3 years long.

Do you ever feel like you are going exactly in the opposite direction from where you want to go?

“I will lead the blind by ways they have not known,
    along unfamiliar paths I will guide them

I will turn the darkness into light before them
    and make the rough places smooth.”

Isaiah 42:6

I would encourage you that even though you may not see why God is taking you to places that are dark or painful, God is working through that path. Sometimes that difficult detour is actually a short cut to where He wants you to go.

 

Bearing Fruit in Season

DSCN8098I used to think of the days I had migraines as lost days. I have struggled with migraines since my youth to varying extents. There have been years when God in his grace has given me a break from the pain. Other years, like this year, pain has stalked me, following me around like a shadow. I have fought the pain, tried to push through it, and medicated it with prescription drugs. But on bad days, I would be in bed all day doing my best to distract myself from the pain with an audio book until the storm passed. These were my “throw away” days. The next day, I would try to work extra hard to catch up on all I hadn’t done the day before. My migraines would come and go in cycles, a few days here, a few days there. Then in October, the migraine days began to run together. As soon as one migraine storm would abate another would begin. Instead of the occasional skirmish, I was besieged under constant daily attack.

During one nine day stretch in October, I hit a low point. During some of the days medication allowed me to carry on many of the external tasks of caring for my family albeit through pain and at a much reduced capacity. Still I was at least managing. Then midway through the pain overcame me. I could not look after my children. I could not go to work. I was so sick vomiting that my husband had to clean up for me. I tried all my usual strategies to distract myself but they weren’t working. I cried out to God to stop the pain but He didn’t. I told God all the things I should be doing that He was preventing me from. “I should be making dinner God”. “I should be teaching my class”. I upset and angry (which most certainly wasn’t helping with the pain!). I was miserable.

I had recently attended a ladies retreat with my church, Calvary Baptist. The speaker, Laura Schular, had poured into our lives that weekend and I’d felt renewed. She mentioned a friend, Heather Hayashi, who wrote and created podcasts out of her chronic illness (http://rhythmsofgrace.ca/). On a whim, the next day I decided to listen to her podcast since nothing else was working. Into my dark and lonely room came the voice of someone who would become a friend. She posed the question, “Can we bear fruit in our illness?” I nearly laughed out loud. The idea seemed so absurd, so far from my current reality. What possible good could come out of lying in bed, in pain, in the dark? To me, these were my “lost” days, days to throw away and hope for a better day tomorrow. Yet the thought persisted.

Ever so gently, I started to see how God was stripping away so many of the external things in my life that I thought were important. Fall deepened. I observed the trees being stripped of their lives and knew how they felt. All the glory of the healthy green leaves of summer, and the vibrant colours of autumn were falling to the ground. Yet the trees were not dead. Though no longer visible, there was still life happening inside the tree.

“They are like trees planted by streams of water, which yield their fruit in its season”

Psalm 1:3

Five months later, I see some buds on the trees. I am by no means through this trial yet. The migraines persist and God is still working on me. Yet by His grace and goodness, I believe He is bringing fruit through this season. If you are going through a season of suffering whether physically or emotionally, I just want to encourage you. Even if you are being stripped down, you are not dead. God is faithful. He can bring life and fruit in any season, even from the darkest of days.

 

 

 

 

Raising Advocates not Adversaries

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One memorable Halloween at the school where I teach, a parent kindly offered to bring in a smoke machine to make the Halloween party more exciting. The party became exciting indeed when the smoke set off the fire alarm sending 400 kids in costumes out into the rain for an unplanned fire drill. The next day I received a lengthy email from an upset parent who accused the school of bringing in the smoke machine on purpose to simulate a real fire thereby scaring her child. The parent was trying to advocate for her child but through her angry email she set herself up as an adversary instead.

In the past fifteen years I have had many experiences of having to advocate for children. First as a teacher, trying to advocate for needed support for struggling students in a school system facing increasing needs and decreased funding. Then, since 2016, as a parent of three adopted children, the oldest of whom receives specialized support in the classroom.

All of us want our children to be successful at school. The question is how best to advocate for our children’s needs effectively.

Ask Don’t Assume

Your child has come home to you upset about an incident at school and you are concerned about the report. What do you do now? I would like to suggest an approach which will help build trust rather than put people on the defensive. While these steps will not guarantee a successful outcome, I believe that they will go a long way to ensure your child is supported at school.

First, whatever the issue, contact the teacher directly to find out more information. Children rarely present the whole picture of what has happened. There is usually more to it. Involve your child in the process so far is appropriate. If their feelings were hurt, offer to come with them while they tell a child or teacher how they feel. Encourage your child to seek help in the moment. It is often very hard to get the full picture after the fact especially when your witnesses are children! Also, do not go directly to the principal at this time unless it is a major incident or something that occurred outside of school time.

Second, keep your emotions in check. When your child encounters a problem when you are not present your protective instincts kick in. Talk about how you are feeling with your partner or a trusted friend. When your children are around, be careful to speak respectfully of the people involved in the issue regardless of your personal feelings. Try to remain calm in the meeting. Recognize that the teacher is probably facing heightened emotions as well. They may be feeling defensive from past experiences and fear being attacked again. Start from a place of seeking understanding not seeking someone to blame.

Thirdly, define the issue. Is the issue:

  • academic: a specific assignment, your child’s learning needs the curriculum
  • social/emotional: your child’s behavior, an incident with another child, bullying etc.
  • teaching style: the amount of structure the teacher provides, how your child is engaged
  • learning support: the support your child receives either from a resource teacher or Educational Assistant (EA)

Fourthly, at the meeting, inform the teacher of what your child has reported and ask the teacher’s perspective on what has happened. Some misunderstandings can be cleared up right then. Others may require follow up either by the teacher or by an administrator.  An example of some helpful questions might be:

  • Academic: How are my child’s learning needs being supported in the classroom? Is there a modification needed such as allowing more time, a quiet work space, fewer questions etc.? How can we support our child at home?
  • Social/emotional: What did you observe of the incident? What part did my child play in the incident? Is there a planned follow-up or intervention?
  • Teaching style: Can you explain your teaching style? If your child is feeling sad or upset about going to school, ask if the teacher has noticed any changes.
  • Support services: How are resource teachers allocated at the school? How much time does my child receive in support? Are they being pulled out or supported in the classroom?

What happens if we can’t agree?

Sometimes, even after you have followed the previous steps, the issue remains unresolved. Either you and the teacher do not agree or there is an unwillingness to address the issues raised.

In the first case, might I suggest you try their way first. There was a time when I proposed a strategy from my son’s counsellor and the school team were not ready to implement it. I felt I had a choice. I could insist on my way. They might agree in spite of their objections but I risked the relationship with the team. Instead, I decided to let it go and see what happened. A month later they called to say their plan wasn’t working and they were going to try the plan the counsellor suggested. The plan worked and my relationship with the school team remained intact.

In the second case, where a breakdown of communication has occurred, request to include others in the discussion. This is the time when can consider setting up a meeting with the principal and the teacher. Or you can ask to be referred to the school-based team. The school-based team is a group usually led by a resource teacher or case worker and often includes the teacher, any support teachers or counsellors, the EA, the principal, and the parents. Adding more people to the discussion can help diffuse tension and provide more perspectives to consider.

Persist but don’t pester!

As a parent, I have a singular focus: what is best for my child. The other people involved have to care for the welfare of many children. Therefore, I believe it is my responsibility to follow up and persist in seeing that recommendations are being followed through. This could be informally through check-ins at the end of the day, notes in planners or emails or through a home-and-back communication book. Or it could be formally, through setting a meeting a month later to see how things are going. Don’t expect lengthy emails every day. Make sure you are also doing your part and following recommendations for support at home.

Raise up Advocates

Your children are going to be in school system for a long time. Through their journey, they are going to meet some amazing people who are going to push them further than you even expect. That has certainly been our experience. When our son came to us, he was completing 25% of the regular curriculum. Three years later, he does 100% of the work everyone else is doing. We thank God for all the progress he has made. There are many factors to his growth. Having a stable forever home, a strong community and also his own resilience have brought him far. He has also progressed because we have worked hard as a team with his teachers and school staff to ensure he is being given the best chance to succeed.

Your experience may be different. You may be facing some difficult obstacles. You may need to advocate and face opposition in order to ensure that your child gets the support he or she needs. However, rather than be discouraged, remember that as you advocate for your children you are teaching them how to solve problems. Model how to treat people respectfully rather than treating them as adversaries. As you do so, you are raising up the next generation to advocate for themselves and for others no matter what challenges they may face in life.