This is the third time I've begun this post and the fourth title I've given it since yesterday. Life. Is. Hard. I certainly do not think I have the corner on life's challenges; however, I do think that if I were to hear about my life from someone else I would be amazed and impressed. I, right now, am neither. The two times I started it yesterday I felt a bit in despair. I didn't really want that to shine through because I do have hope and faith that things will, indeed and in time, work out. I'm better now.
I have wonderful sons, but they are challenging and they face many challenges. Today is Taylor's "diaversary," or in other words the anniversary of his diabetes diagnosis. Seven years. That day is ingrained in my mind. I actually have quite a few days that relate to his life (and near death) experiences that are there forever. My mother-in-law, Claudia, said it best when she heard the news, "Not Taylor." She knew that he already dealt with food allergies, asthma, and eczema.
He usually handles all his challenges with grace and positivity. He is dealing with teenage angst along with the rest. Sadly, he doesn't feel as if he is enough. His usual sparkle has dimmed as he struggles making his way through his sophomore year of high school. I long to help him see his wonderful worth.
Tonight I took a cue from members of a diabetes Facebook group I belong to and decided to celebrate him. I see posts of happy kids eating a doughnut as they commemorate the anniversary of their diagnosis. It is not something really to celebrate and Taylor really isn't a partier, but I felt like he needed a lift so we loaded up the family and went to dinner at a restaurant of his choosing. Celebrating that we have all made it seven years is worth recognition. I had everyone share something they either have learned from or admire about Taylor. Everyone had a quick answer. Emma volunteered to go first and said that she learned about 4-wheeler engines because of Taylor. Estelle said she learned about diabetes, and Sarah said that she likes the way he looks at the positive side of things. Destry said that he admires him for not complaining and just accepting things. I added that he doesn't get offended or hurt when people say ignorant things. He lets them roll of his back. Spencer didn't come with us, but I know he would have had something positive to add. We had a lovely evening before everyone scattered to their Friday night friend activities.
Keeping his sweet soul alive has been an extra challenge as a parent. I am grateful for the medical knowledge that helps us. I have a constant worry that at any time he could have an accidental exposure to peanuts, or he'll that one "high" or "low" blood sugar that could be his last. If he sleeps late, or doesn't answer a text, or the school calls, my heart skips a beat or two. As I open his bedroom door to check on him I hold my breath until I know he is still breathing. When he gets a cold, or hay fever I am on edge hoping and praying that we don't need to give him prednisone. A miracle drug for asthma, but a literal killer for a diabetic person.
In addition to his life-threatening conditions, he has several annoying ones. Like, five missing permanent teeth, a misaligned jaw and the potential of being his orthodontist's longest patient in braces. He has had three impacted teeth requiring surgery along with five baby teeth extractions. He can't eat eggs because they mess with his digestive system and aggravate his eczema. He is a very picky eater. It's a sensory/texture thing. I worry that he is getting proper nutrition.
Yesterday, Spencer had another rough day. He has more rough ones than good ones it seems. I can't keep up. We had an appointment with a guy at the Conference Center in Salt Lake to see about doing a service mission since a full time mission doesn't seem likely given his mental state. He had been excited about it up until it was time to go. He said he didn't want to go. I told him to get in the car; we have an appointment and we are going.
I got a few blocks from home and he started banging his head on the window and threatening to jump out of the car. I pulled into a parking lot and stopped. He got out and said he was going to walk into traffic to kill himself. I watched him safely cross Redwood Road, kneel down on the grass on the other side and cry. I got in the car, drove to him and opened the door. He got in. We didn't go to the Conference Center, obviously. I asked him to text the guy who was expecting us so he would be waiting. He told him he had a family emergency and wouldn't be able to make it. That works.
I dropped him off at home and went for a drive. I needed a moment to pray, gather my own thoughts and emotions before I spoke to him. The other kids were about an hour and a half from returning home. Spencer called me about 20 minutes later wondering where I was and asking for a hug. I went home. I held him, but did not know what to say. I don't know what to do. I have said all the words and done all I can think of to help this child of mine. I am at a complete loss. We are in no better a place now than we were when he first went to therapy at age seven, or when we began trying medications at age nine. He's 18; a legal adult. I have never really known how to parent him and now that he's an adult I especially don't.
We saw his psychiatrist today, Matthew Swenson. Love him. I asked to speak to him privately at first. I shared my concerns. He then spoke with Spencer privately. Then together he suggested a new/additional/instead of diagnosis. We already have a long list: OCD, generalized anxiety disorder, sensory processing disorder, ADHD, depression, and now bipolar disorder. Since the drugs for all the other things don't seem to do anything for him we are going to try drugs to stabilize his moods. Bipolar is not usually diagnosed until age 19-25. I think, not because it doesn't exist in children, it just looks different. Dr. Swenson said that even top pediatric psychiatrists can't agree on what it would look like in children. Spencer is complicated and doesn't fit into any one hole. No one really knows, I don't think. God does, but He doesn't feel the need to let me in on it.
For whatever reason the Heavens have not seen fit to give me specific, direct help with this matter. I just do the best I can with no certainty whatsoever. I'm sure there is a reason for this, maybe I'm not listening. I don't know.
All of these things are a financial worry. We spend thousands of dollars every year on medical treatments, therapy, and drugs. My marriage is sometimes messy. I try to fulfill my church callings and volunteer at school and in the community and attend the temple. I'd like to do more; I can't. Some days I can just breathe and hope that everyone around me does the same.
I have much to be grateful for.
I trust that God knows what He is doing.
I know my Savior knows my heart.
I have hope
and I have love.
So I hold on...
I wrote this on April 22, but fro some reason I didn't publish it.
I have wonderful sons, but they are challenging and they face many challenges. Today is Taylor's "diaversary," or in other words the anniversary of his diabetes diagnosis. Seven years. That day is ingrained in my mind. I actually have quite a few days that relate to his life (and near death) experiences that are there forever. My mother-in-law, Claudia, said it best when she heard the news, "Not Taylor." She knew that he already dealt with food allergies, asthma, and eczema.
He usually handles all his challenges with grace and positivity. He is dealing with teenage angst along with the rest. Sadly, he doesn't feel as if he is enough. His usual sparkle has dimmed as he struggles making his way through his sophomore year of high school. I long to help him see his wonderful worth.
Tonight I took a cue from members of a diabetes Facebook group I belong to and decided to celebrate him. I see posts of happy kids eating a doughnut as they commemorate the anniversary of their diagnosis. It is not something really to celebrate and Taylor really isn't a partier, but I felt like he needed a lift so we loaded up the family and went to dinner at a restaurant of his choosing. Celebrating that we have all made it seven years is worth recognition. I had everyone share something they either have learned from or admire about Taylor. Everyone had a quick answer. Emma volunteered to go first and said that she learned about 4-wheeler engines because of Taylor. Estelle said she learned about diabetes, and Sarah said that she likes the way he looks at the positive side of things. Destry said that he admires him for not complaining and just accepting things. I added that he doesn't get offended or hurt when people say ignorant things. He lets them roll of his back. Spencer didn't come with us, but I know he would have had something positive to add. We had a lovely evening before everyone scattered to their Friday night friend activities.
Keeping his sweet soul alive has been an extra challenge as a parent. I am grateful for the medical knowledge that helps us. I have a constant worry that at any time he could have an accidental exposure to peanuts, or he'll that one "high" or "low" blood sugar that could be his last. If he sleeps late, or doesn't answer a text, or the school calls, my heart skips a beat or two. As I open his bedroom door to check on him I hold my breath until I know he is still breathing. When he gets a cold, or hay fever I am on edge hoping and praying that we don't need to give him prednisone. A miracle drug for asthma, but a literal killer for a diabetic person.
In addition to his life-threatening conditions, he has several annoying ones. Like, five missing permanent teeth, a misaligned jaw and the potential of being his orthodontist's longest patient in braces. He has had three impacted teeth requiring surgery along with five baby teeth extractions. He can't eat eggs because they mess with his digestive system and aggravate his eczema. He is a very picky eater. It's a sensory/texture thing. I worry that he is getting proper nutrition.
Yesterday, Spencer had another rough day. He has more rough ones than good ones it seems. I can't keep up. We had an appointment with a guy at the Conference Center in Salt Lake to see about doing a service mission since a full time mission doesn't seem likely given his mental state. He had been excited about it up until it was time to go. He said he didn't want to go. I told him to get in the car; we have an appointment and we are going.
I got a few blocks from home and he started banging his head on the window and threatening to jump out of the car. I pulled into a parking lot and stopped. He got out and said he was going to walk into traffic to kill himself. I watched him safely cross Redwood Road, kneel down on the grass on the other side and cry. I got in the car, drove to him and opened the door. He got in. We didn't go to the Conference Center, obviously. I asked him to text the guy who was expecting us so he would be waiting. He told him he had a family emergency and wouldn't be able to make it. That works.
I dropped him off at home and went for a drive. I needed a moment to pray, gather my own thoughts and emotions before I spoke to him. The other kids were about an hour and a half from returning home. Spencer called me about 20 minutes later wondering where I was and asking for a hug. I went home. I held him, but did not know what to say. I don't know what to do. I have said all the words and done all I can think of to help this child of mine. I am at a complete loss. We are in no better a place now than we were when he first went to therapy at age seven, or when we began trying medications at age nine. He's 18; a legal adult. I have never really known how to parent him and now that he's an adult I especially don't.
We saw his psychiatrist today, Matthew Swenson. Love him. I asked to speak to him privately at first. I shared my concerns. He then spoke with Spencer privately. Then together he suggested a new/additional/instead of diagnosis. We already have a long list: OCD, generalized anxiety disorder, sensory processing disorder, ADHD, depression, and now bipolar disorder. Since the drugs for all the other things don't seem to do anything for him we are going to try drugs to stabilize his moods. Bipolar is not usually diagnosed until age 19-25. I think, not because it doesn't exist in children, it just looks different. Dr. Swenson said that even top pediatric psychiatrists can't agree on what it would look like in children. Spencer is complicated and doesn't fit into any one hole. No one really knows, I don't think. God does, but He doesn't feel the need to let me in on it.
For whatever reason the Heavens have not seen fit to give me specific, direct help with this matter. I just do the best I can with no certainty whatsoever. I'm sure there is a reason for this, maybe I'm not listening. I don't know.
All of these things are a financial worry. We spend thousands of dollars every year on medical treatments, therapy, and drugs. My marriage is sometimes messy. I try to fulfill my church callings and volunteer at school and in the community and attend the temple. I'd like to do more; I can't. Some days I can just breathe and hope that everyone around me does the same.
I have much to be grateful for.
I trust that God knows what He is doing.
I know my Savior knows my heart.
I have hope
and I have love.
So I hold on...
I wrote this on April 22, but fro some reason I didn't publish it.
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