Fourteen years of living with type 1 diabetes

child with diabetes

14 years ago today my world turned upside down. It was not a fork in the road. It was not a minor blip on the radar of life. A bomb exploded and it forever changed the landscape of my life. It was the day diabetes entered our life.

14 years ago this morning, I was looking at a sick little boy in my arms and was waiting to be able to take him in to see our doctor.  I was ignorant of what was to come.

And just like that, he is a young man who happens to have diabetes

14 years later, my son is a young man making his own decisions and stretching his wings…who just happens to live with Type 1 diabetes.  I am stumbling to come to terms with my new role of no longer being a hands-on mom and often find myself looking back to see what I have done in hopes of figuring out where I will go next.

There have been a lot of changes in diabetes technology

insulin pumps after 14 years of type 1 diabetes

14 years of type 1 diabetes have brought many changes.  Insulin pumps are more readily available and continuous glucose monitors are no longer things found in hospitals that are blinded for 7 days.  They are real tools that families and individuals are using in real-time to help fine tune their care.

14 years later and still living strong with diabetes

14 years ago, type 1 diabetes threatened to take the life of my son.  Today he is strong, vibrant and learning how to handle his disease.  Diabetes does not control him. It’s just his “thing” to live with.

We have not always seen smooth sailing. We have had our moments.  He has driven me crazy at times–failing to test or change infusion sets. He still can drive me nuts. I have yelled at him because of my own failings and frustrations.  We are not perfect but we are living. As the commercial says, we are living with diabetes. It stops him from little.

Type 1 diabetes has brought us life long friends

friendships after 14 years of type 1diabetes

Type 1 diabetes has brought me the most incredible friendships.  I have friends throughout the world who have reached out at various times in my life to help me up or shove me forward. I hope I have done the same for them.

14 years seems like such a long time and yet I can see us back in that ICU just like it was yesterday.  Some things you never forget…my son has but I haven’t.

Thank you

On days like today,  I look back and say thank you! Thank you to the doctors and specialists that kept him alive and have taught us through the years.  Thank you to the Higher Power that has been with us through it all. Thank you to the friends and family who have joined us on this journey. Thank you for 14 years of good health and improved technology!

Diabetes sucks but life after diabetes…well it’s still life and that is pretty amazing!

Back in the Saddle

Diabetes moved away September first of last year.  Sadly this also means that my son did as well. It has been a struggle for me. I have had to adjust to a new role and honestly, I am not always sure what exactly that role is.  I am a hands on Mom and being a mom from a distance has always been a challenge but with a soon to be 20-year-old living in another province, I am slowly learning.

With the Christmas holidays, I got to be a hands on mom again! It was wonderful to have both of my boys with me. There was baking to eat, meals to prepare and even the odd bit of chauffeuring to be done. It was great.

There was also reminding about bg checks, counting carbs and doing site changes.  Diabetes was back as well. I was worried that I wouldn’t wake up for night-time tests but I did with no problem.  I would easily wake numerous times during the night and get up and check on my youngest son. I knew that he most likely was not testing a lot during the nights on his own so I decided to help him out. I woke every 2-4 hours and tested to give us some great data to look at.

Since my son was here, there was no need for a Wednesday night phone call or waiting for him to upload data.  I have a cable here, as well as his pump and meter.  We could sit down together and discuss the many highs because of the constant eating.  We could talk about basal versus bolus and see what may or may not need tweaking.

With each night test and each dead test strip, I felt grateful.  It seemed weird to walk into his room and test, knowing how many nights I hated doing just that.  This time it was a privilege. I was helping my son. I was giving him a break and keeping him safe while he was under my roof. I wondered if his wife will one day help him this way? I have no idea. He told me that he has a girlfriend now. I wonder what she knows about his care? Knowing how private my son is, I am guessing that she knows next to nothing. That’s okay for now.  When she is important to his life and worthy of his deeper affection, she will learn.

Until then, I will test him at night when he is with me. I will be surprised how quickly we both fall back into old routines. I will remain amazed how quickly time flies and how much my children have matured. I will be grateful for the ability and the opportunity to help my son if only in small ways now. IMG_0164

Its not my disease?

We are constantly told as parents of children with diabetes to remember that this is not our disease.  When you are dealing with a toddler or a small child, it is really difficult to take this advice to heart.  A two year old cannot grasp what is going on in their bodies. It is Mom and Dad’s burden.  The challenge as parents, is to realize that while it was our burden, our children’s diabetes is not our disease.

Last week my son was having technical difficulties uploading his pump.  After many messages and much frustration on my part, I finally decided to ignore our weekly diabetes education session for a bit. I began to wonder if my son was on overload.  He had been to two different diabetes educators in a matter of weeks and had Mom calling him to discuss what was going on.

I began to think about taking a total break. Maybe I should just be letting the “experts” handle this. Perhaps it was time for Mom to just step away.  I was finding myself frustrated and angered when I wasn’t seeing enough data to make educated guesses about my son’s care.  Things were building up and I wondered if I was better just walking away for a bit. I began to think that he would have more peace and learn more if I just let it all be.

As my emotions churned and became more negative, I was hit by a thought. It literally felt like I was hit in the side of the head with a 2×4.  The  weight of this realization made me sit down and shake my head and wonder why it took me so long to “get it”.  I did not need all of that information.  The person who needed it had it–my son! My job was to ask him the right questions. My job was to guide him towards the answers but let him find his own solutions.

With that realization, a huge weight lifted off of my shoulders. I was no longer carrying the burden of an impossible task. I was now sharing, teaching, and supporting–doing my job as a parent.  It felt wonderful!

When I picked up the phone and began talking to my son, I asked him if he had the pump program open.  He was shocked.  Why did he need it? I suggested that he might want to see it so he could decide what needed to be done.

We then discussed the areas that he felt needed to be changed. I asked him what needed to be tweaked, a basal or a bolus ratio.  He said his carb to insulin ratio was perfect.  I asked him why.  “Because the dietitian said so.”  I laughed and said that he needed to say so! We went through a process of establishing if she was right.  The next step was to decide when to make the change.  I pulled out my John Walsh book and quoted to him how to change a basal rate.  He then made the decision of when and how much of a change he would make.

I was proud of him.  I was proud of me.  We were both learning.  He was being empowered and it gave me a huge sense of relief.  This really is his disease. It my job to help him, encourage him and be there to help but at the end of the day only he can test, bolus and adjust. Its all up to him.

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But I’m not ready!

I began writing this blog to share with other people living with diabetes. I wanted people to know that they were not alone in what they were going through,  This has meant that I have shared feelings as they happened–both positive and negative, real and raw.   Today is no different.

I have been going through terrible Momma anxiety and guilt about my son choosing to move back with his father.  I know in my head why he made the move that he did. My head knows that it was not personal.  My head knows that this decision actually had very little to do with me and had everything to do with being 16 and wanting to stretch his wings.  My sister kindly explained things to me and helped me to understand the thought process of a teen in this position. My heart still feels bruised. It still wants to take everything personally but it’s not all about me.

“It’s not all about me” is a really difficult concept to grasp for a control freak like me.  I like to think that I am a lot less of a control freak than I once was….and the scary thing is that its true! Life has made me learn to let go a lot more than I once did but I am still far from perfect (but don’t tell anyone). I still would like more things to go my way on my schedule. Since my son felt that life should be on his schedule and his schedule said it was time to leave Mom, my compromise when it came to his diabetes care was that we talk each week about his readings, trends, and problems. This was fine and has worked well for the most part.

We have bumps.  I can get frustrated by what I see (or don’t see). I do my best to keep my words constructive.  Occasionally I fail.  Last week my son headed off to his first diabetes clinic without Mom in attendance.  Mom, being a bit of a control freak still, had contacted the clinic, reminded said son of the appointment, and forwarded his current basal pattern and carb to insulin ratios to the nurse.  On Monday the nurse educator contacted me with my son’s A1c, noted the changes she had made and let me know where she intended to take things from there.

Remember that I am a control freak.  Remember that I spent years going to that clinic and my level of diabetes knowledge was equal to or better than their’s in some cases.  When we attended, they asked me what was new in care techniques.  I was the person who brought in information on Lantus, the use of glucagon during illness as well as the latest in pump technology.  Each time I have gone into any of our clinics (the one he is now attending and the last one that he attended with me), the team was always interested to hear from me what was new in the realm of treatment.  I guess that means I have a huge ego to go with my controlling personality and that can’t be good.

Back to the new nurse (whom I have never met), she felt that my son would benefit from more work with a CDE and set up another appointment with an educator closer to his home.  He is off to see this person today.  The gamut of emotions I am experiencing is crazy.

The rational me says “its good that he is exposed to new ideas and new people.  Sometimes someone else saying the same thing that you have said can allow things to finally click.  He has a good knowledge of his care.  He will not easily be confused by someone else’s suggestions. This is a good thing.”

The emotional, still wounded momma in me says, “Whoa here!! We are doing okay thank you! I am very capable of teaching my son.  We may be apart in distance but I am still as involved as I can be.  I have managed to maintain excellent A1c’s in this child for 13+ years,  Even on his own, this A1c would be coveted by a lot of parents who have teens with diabetes. Why are you pushing me out of this?”

That’s what it boils down to isn’t it? A momma bear who has been so ferociously protective of her children for so many years feeling pushed away on all sides.  Is it really happening? No.  The nurse from my son’s clinic has kept me in the loop of what is happening and the changes that she made.  My son has kept me in the loop calling me and telling me what they talked about.  No one is pushing me out.  They are working to do the very best for my son.  They are exposing my son to new ideas.

Yes, he has already been exposed to some of the best minds in diabetes care in the world.  He knows that.  He has to be able to learn to say, “I know that already” or “thanks but this works for me because…” He is learning to speak for himself.  That is the goal for a parent–to raise strong, independent children. I told my boys to never be sheep.  Do what you feel is right. Never blindly follow.  My son knows that this also applies to his health care.  He also knows that everyone needs help now and again and that with knowledge comes power.

He is growing. He is learning. My role is changing and it is changing quickly.  That is painful.  That is my problem.  I have to adjust.  I have to remember that it’s not about me. It’s not personal. Its life. Its change.  It’s what happens when our children grow up.

For those of you who are also dealing with these issues…you are not alone. For those who have gone before me, thank you for reminding me that this too shall pass. Change is important in all of our lives. It can be terribly difficult but change is what makes the world go around.

polar-bear-mom-and-cubs

 

 

 

Watching The Stumbles from a Distance

My son has been living with his father now for two full months. I still walk into his room and hope to find him there. I still find used test strips in strange locations. I still wake at night thinking that I should get up and test him but it is getting easier. I am slowly learning to adapt.

I keep in touch with both of my boys on a daily basis. I still worry about both of them.  I worry about the troubles that can find young men. I worry about many things that a parent will concern themselves with but I don’t obsess over any of it. I focus on how strong and independent they are. I pray that they always remember that I always want the very best for them.

My youngest son has been great about uploading his pump and touching base with me once a week to discuss his readings.  I have worked very hard never to freak out at the lack of testing. I don’t scream at him when I see high readings.  I normally just ask for more data. We discuss how different meters are functioning and talk about how to handle bad sites.

Stepping back and letting him make the decisions is very difficult.  It’s not because I am a control freak (although that has had its challenges), it’s because I am a Mom.  I want to protect my children from all ills. I failed him once by allowing him to get this disease. It has therefore been my job to protect him from the ravages of it.  That’s how a parent thinks.

Yesterday my son and I talked about his readings.  Once again I did not scream. I did not cry–but boy did I want to! I looked at the very few readings (maybe two per day) and saw none of them in range.  All readings were incredibly high (a low reading was 14 mmol or 252 mgdl).  My mind’s eye saw nothing but kidneys breaking down and eyes being damaged.  I quickly reined in my imagination and remembered the concept of metabolic memory.  I had prepared for this day.  I had kept him in excellent control his entire life.  The theory was that it would protect him through this time as he stumbled and found his own stride.

Instead of showing my obvious distress, I reminded my son that he felt bad when he was high. I asked him a few questions about his readings–“how long before you tested did you eat? So you were probably high for at least four hours previous.”  I then set to work. I was nervous about making sweeping changes with so little data but I had to do something! I upped his rates almost across the board.  I suggested that he might want to try to test a bit more so we could get a better idea of where we stand and help him to feel more like himself. I left it there.

This would have to be his decision. He had to decide to look after himself and make testing a priority again.  We had met for dinner a month ago when I was near the town that he now lives in.  I watched as he began to eat without testing. When I questioned him, he quickly took out the pump remote, tested and stated that he had forgotten because he was just so hungry.  Perhaps that was the case but the data I have been seeing suggests that he just often doesn’t bother to take the time to test most of the time.  He remembers to bolus however so I will be grateful for the things he does do.

I praised him for giving me the truth about high numbers. He was not using the pump remote for most readings so he could easily have lied about the 20 and 30s (360-540+) that I was seeing on his upload.  I said that it was great that he was showing me these.  We would work together to bring the readings more in range.

I have no illusions that things will change after this latest talk.  We had a similar one a few weeks ago.  That reality is what sets me on the edge of tears.  He will see his diabetes team next week. I pray that they will help him see sense but again, I doubt it. He is 16.  He knows best. He will have to learn on his own.  One day he will hopefully realize that I was trying to keep him healthy.

I have spent the past 13.5 years teaching him how to take care of himself. He has the tools.  Watching him not use them is heart-wrenching.  Many adults with diabetes and parents with older children tell me that this will pass. One day he will remember all that he was taught and will get himself back on track.  I do believe that–I have to.  The hard part is waiting for that to happen and in the meantime standing on the side lines watching, guiding, and praying that the scrapes are no more than that.

My son is a good kid–both of my children are.  They have never brought any trouble to my door. They have never been involved in any serious and dangerous behaviors that I know of.  They have always been quite respectful of me and as I said, all around great children.  Diabetes just adds that extra layer. It’s like that best friend that you really don’t want your kids to hang around with but they think he is the best thing going.  You know the dangers that he can cause for your child and they think that they have him under control.  Daily you pray that they are right…but it is terribly difficult.

I will continue to monitor my son’s longtime friend called diabetes. I will work to prevent as many scrapes as I can. I will be on the sidelines encouraging him to find his own stride and remembering that no matter what I have done in the past, this is his disease to learn to manage.

Liam Oct 1998

Still Finding Feathers

My nest has been empty for over a month now and it still taking a bit to get used to.

My son has been quite good at making sure he uploads his pump for me to look at his readings. He appears to be testing more than once a day so I try to offer little criticism and simply make gentle suggestions where needed.

Moving diabetes to the back of my mind after all of these years is a challenge.  I still wake up a lot during the night. I still worry but that is what Moms do. I worry about both of my children. Diabetes just gives me one more thing to be concerned about.

I really don’t miss diabetes. I don’t miss having to get up in the middle of the night. I don’t miss wondering why he had a higher or lower reading than expected. I don’t miss time spent at diabetes clinics.  I don’t miss trying to figure out a new insulin pump.

I do however miss my son. Don’t get me wrong, I miss both of my boys but I have had a bit longer to get used to my oldest being away.  My youngest and I have spent a lot of time together over his lifetime.  His best friend is my best friend’s son.  We visited together. We went on trips together, we counted carbs together.  He is now enjoying life on his own–doing stuff without Mom always there. I am sure he is loving the freedom! It’s different for me.

I still miss walking into the kitchen and seeing him sat at the table surrounded by a fridge full of food.  I miss seeing his chin up bar dangling from a door way. I miss his dry, quick whit and timing. I miss the chicken fights that we would break into as we met in the hall. 

We text every day.  We talk at least once a week. I make sure that diabetes is the last thing that we discuss. It is rarely ever the very first. I ask about his day, his school work, his friends…then I ask about readings, meters and his pump. When he tells me “I screwed up.”  I try to remind him that his job as a pancreas is both unnatural and exceptionally difficult.  As long as he knows what he did wrong and he tries to fix it next time, its something to simply learn from and move forward.

I still find test strips in the most unusual of places.  There was one in my washer even though I have not done any of his laundry in ages.  We have a fridge full of insulin “just in case”.  There is a bottle of test strips that I found hidden in a box and part of an insulin cartridge that still sits in a place of honor in my car.

My new life of a Mom of children who no longer live at home is still very busy. My boys are always in my thoughts and their ability to stand on their own shows that I have taught them independence.  They will be home at Christmas.  I will savor every moment. I will fall back into the testing routine.

Life is changing.  Change is part of life but finding those little feathers (also known as diabetes waste) in hidden places of the house no longer make me grumble at their ability to “jump” out of the trash.  They now make me smile because they remind me of my son.

empty nest Dstyle

New Challenges

Someone asked me to continue to update my experience has a mother of a teen with diabetes who is living elsewhere.  Let me say its a bigger challenge than having him live here!

There are definitely growing pains.  As a mom, I miss having my sons around me. I actually do wake up during the night and feel lost because there is no one to test or check on. I would gladly teleport myself to some of you sleep deprived parents but unfortunately the only things that I really can do is roll over and hope he is okay where he is.

My son on the other hand seems to be loving not having Mom hover over him and what teen wouldn’t? The rules are very different for him now and he is enjoying it to the extreme I am sure.  A friend reminded me recently that even when children are away from their parents and thinking about doing a certain behavior, often Mom or Dad’s voice is still nagging in the back of their head and they may be a bit more cautious because “what if Mom/Dad found out? They would kill me!” I hope this is the case with my boys…well you know that they continue to have some common sense because its not like I would really “kill” them exactly…

Obviously with a mom who likes to be hands on and get things done and a 16 year old who is loving being away from that, there are challenges. Oh are there challenges!!  Bringing my expectations down to a reasonable level is very, very difficult and in part only done with the help of great friends.

While we do text daily I make sure that diabetes is not often the topic of conversation. We talk like, school and diabetes if he has an issue that needs to be dealt with right away. We have however agreed to sit down and chat about diabetes specifically once per week. We chose Wednesday nights.

The first week this worked perfectly.  He uploaded his pump. I looked at the data, formed my questions and was able to be calm by the time we talked. All worked out really well. The next week I had to be away on the Wednesday so we chatted Tuesday. There were a few more issues. We spoke of what to do when type situations arose. It went okay.  This week, well its been three weeks. The shine was going to wear off of things right?

Yesterday I sent him a message reminding him of our “date”.  I told him to upload his pump when he got home from school so that I wouldn’t keep him up late. Last time he had had computer issues and it took forever to even look at the data. When he got home he sent me a message telling me that the remote for his pump still didn’t work. What??? Had he called the support people? Of course not.  He was waiting for Mom to do this. Mom agreed.

I told him to call me after his supper and we would call pump support. I would keep him on one phone and call the support people on the other so that I could ask him whatever they asked me.  I ate my supper and waited…and I waited…and I waited. It turned out that heading out with a friend for the night was way more important than Mom or a pump issue.  At 11:30pm I told him to take pictures of the back of the pump and the remote, send me details and I would deal with it in the morning. We would also talk pump the next afternoon BEFORE he got busy with other things.

After a bit of troubleshooting on my part, I got his remote working again.  There is definitely an issue so I am waiting for pump support to return my call.

Balancing 16 year old freedom, Mom control and Mom letting go is definitely difficult.  This may be one of the biggest challenges I have faced in a very, very long time.  Its a good thing I have a great relationship with my hairdresser. I may need a lot of hair color to get me through!

A reminder to myself. I may need to post it on a wall somewhere.
A reminder to myself. I may need to post it on a wall somewhere.

Its Little Things

I made my first trip to Costco as an empty nester the other week. It was a bizzare experience when you factor in so many years of living with diabetes and children.

There were the normal things..the boxes of cereal that I don’t need because my boys are not here to eat it.  There was the flavored water that my youngest loved to drink that I don’t have to worry about buying until he comes to visit.  There were also the meats that were packaged into portions for two adults to eat rather than two adults and a ravenous teen or two.

Next came the diabetes things…buying items and not worrying what the carb count was.  Putting items away and not worrying about saving the nutritional information to be referred to later.

I can’t say that it felt good. It felt..well a little empty.  I have been shopping and cooking for a child for the past 20 years. I still chat with them each day.  We still FaceTime or Skype and call but not physically seeing them each day?  Not feeding them each day? Well its strange. I know my wallet will appreciate it but its a lot harder for the heart to get used to.

They will visit and old habits will quickly return. I will, and do stalk up on all of their favorite baked and bought goods for their arrival.  This is just another phase of life. It just takes a bit to get used to as well.

I still wake at night. I almost long to get up and test…almost.  Life changes. Children grow. Normally we have time to prepare.  Sometimes we don’t.  Either way we go on with our new roles and make the very best of them. I continue to be there for both of my children. I continue to teach my youngest son as much as I can about diabetes and provide him with as many supports as I can. Its strange how the little things impact you.data

 

 

Changing of the Pump

We finally did it…and it hurt. After 10 years of using a Cozmo insulin pump, and almost a year of no warranty, my son got a new insulin pump.

I was warned years ago that when we changed from Cozmo, we were best to simply forget that we ever owned a Cozmo. I was told to go forward as if this new pump was the very first one you had ever used. That was the only way to avoid the grief and pain that came with change. Boy were they right!

The change itself was beyond painless. I knew the pump that my son was okay with (if he had to retire his Cozmo).  The only issue was the color.  I contacted my Animas rep and in literally a matter of days, she had the pump ordered and was in our kitchen to do all of the training. Karyn is beyond amazing!

As we went through the features of his Ping versus the features we had on our Cozmo, Karyn was just as sad as we were to be switching pumps. She told us that she wanted some of those features on her pump! Kindly, another Animas employee asked that I send her a list of some of the features we were missing in hopes of one day being able to secure them for use in an Animas pump.  Did I mention that this company really has great people working for them?

The Ping doesn’t automatically switch basals from weekday to weekend. It doesn’t remind my son when to change his sites. It also doesn’t allow you to preset personalized temporary basal rates or do all of your pump changes on your computer and beam it back to your pump. It does have a remote that speaks to the pump.  Granted we had a Cozmonitor that did that too but we haven’t used it in years and it was attached to the back of the pump.  The Ping remote is a handheld devise that allows me to test my son at night, and do a correction without searching under the covers for his pump.

The Ping also allows him to upload his pump to a website and then Mom can “see” all of his bg tests as well as pump issues and basal rates.  This was a great comfort for reasons I will discuss in another post.

We are now about three weeks into pumping with the Ping.  There have been real glitches. We have both accidentally stopped boluses.  He has somehow suspended a basal rate.  He has failed to put a cartridge in properly and had issues but we will get there. This is still a good pump. It has a warranty if we have problems. We have great support and did I mention that its now under warranty?ping

The Magic Wand Worked

My son told me that magically, after months of not testing and pretending that his diabetes does not exist whenever he was away from me, he would change.  He would test. He would wake up in the middle of the night to test and treat. He would bolus without reminder. He would become in charge of his own diabetes care!

I was cynical.  I knew that he “could” do it but time and time again he had shown that he wouldn’t do it. The other night was our time to review his readings and settings. I waited for his pump to be uploaded.

As I looked over the data, I was pleasantly surprised.  There were a decent number of readings–a lot of them high but there was data to work with!  I looked at the past few days, the ones that reflected back to school readings. There were numbers missing.  There was only one overnight test.  There was no testing the entire time he was at school.  I reminded myself that there was to be no judgement. I had vowed not to ever freak out no matter what I saw.  He was to learn. This was to be a constructive process.

My son and I began to talk.  I asked about the missed readings.  He said that he had used a different meter. He was going to start using his Ping only from now on.  It was more convenient to have one device do everything rather than testing and then taking out his pump (hold on, wasn’t that what the rep and I had told him when we did the new pump training?).  He gave me the readings and I knew that he had really checked.  He never gives out of range readings if he is lying. He also would never fess up to missed checks if he was trying to get out of something.

I told him that I only saw one overnight. What had happened to testing during the night? He was instantly on the defensive. He swore he had tested! He had the glass in his room to prove it! He had been in range but on the low side so he had decided to add some juice. He had tested!! I laughed and said okay.  I reminded him to input the readings into the pump next time so that I could see them before we make any changes.

He relaxed and we walked through how to manually add readings. We also reviewed how to use temporary basal rates on the new pump when exercising.  Suddenly he cried out “OH NO!! We forgot to change to weekday basal rates!”

I laughed again. I knew the change had not been made…well I didn’t really expect him to suddenly remember that this had to be done manually after 10 years of having a pump do it for you.  I told him that was fine. He could change it right then and there. We would not do any alteration on his current patterns but he had to remember to switch back on the weekend.  He asked to be reminded. Hopefully between the two of us we will get in the swing of this.

As the conversation ended, I felt more at ease. Perhaps he is growing up.  He will stumble. I am sure he will have times that he forgets but he is showing himself that he can do this.  He is showing me that my teaching did not fall on deaf ears.  Thank heavens for the magic wand that got him on the ball..well at least for this week. magic-wand