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Reflections on Loss

February 28, 2021
by Tricia Osterholm
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Rare Disease Day

February 28 is Rare Disease Day, meant to bring awareness to rare conditions and the people affected by them. Finding out that our daughter had a rare disease was shocking, especially because we found out too late. The doctors could not help her, and she never got to know what had been causing all of her health problems. This is sad reality with rare diseases; either it does not get diagnosed, or if it does there may not be a treatment or cure. My daughter Kayln had a brain AVM, and this condition took over her life for several years before it ruptured in 2015, and we lost her. If there were greater awareness, and more funding for research for these conditions, maybe others would not have to go through what our daughter experienced. That is my hope.

January 30, 2021
by Tricia Osterholm
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Memories and emotions

I wish I felt free to talk to others about my daughter – what she was like, what my best memories of her are. I am uncertain how people would react to that though, so I end up talking about Kayln with just a few people. When I do talk about her, I may talk about the same things over and over, because that is all I have. It is painful to realize that I can’t make new memories with her. That makes it more important than ever to hold on to the good memories.

Even though it has been over five years since my daughter died, I miss her every day. I still encounter moments of deep sorrow welling up inside and I have to let the tears out. It often takes me by surprise, and sometimes I don’t even know what the trigger was. Normally I am not much of a crier. In fact, one of my co-workers said I was stoic. It’s really a misconception, though; learning to control the painful emotions has been a long, hard struggle. You really can’t tell what a person is going through on the inside by looking at the face they present to the outside world.

September 3, 2020
by Tricia Osterholm
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Blessings on this day

Kayln would be 26 today. In the photos below she was 16, and it’s hard to believe a decade has gone by since she was this happy, healthy young lady. I feel both blessed and broken looking at these pictures, wishing I could hold on to those days when she was enjoying life. It’s natural to focus on the pain of loss, the tough days of her illness and lose sight of all the blessings she brought to our lives. Instead I can choose to focus on the joy she brought us, and be blessed by the 20 years we had with her. Happy birthday, Kayln. You are forever in our hearts.

July 30, 2020
by Tricia Osterholm
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A Simple Moment

Guatemala visit
This photo brings back happy memories. The children we encountered in Guatemala loved my daughter; they were fascinated with her hair and loved to braid it. Kayln was always so good with kids, very patient.

Passing out candy to the children was a simple but special moment we captured.
Candy

I will always have the memories of this adventure we went on together. This was a time before life got complicated with her health problems. When I am missing her it helps to look back on the good times we shared. These are the moments I will treasure.

March 13, 2020
by Tricia Osterholm
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Broken Yet Blessed

Pastel flowers picture

Five years ago today I Iost my daughter, Kayln, but the passage of time has not changed my love for her or my longing to see her again. Navigating this path of loss and grief has meant finding the courage to move forward when I would rather go nowhere, feeling broken yet blessed at the same time, feeling despondent that she is gone yet finding hope in my faith. It is not one or the other, all or none. Some days I am at peace, and other days in emotional turmoil. I work to focus on the positive, and I am deeply grateful for the loved ones around me. Yet on days like today, I am painfully reminded of her absence, picturing the future Kayln would have had, and longing for the time we would have spent together. Today is a day to acknowledge the brokenness this loss has brought, commingled with gratitude for the blessing of the twenty years we had with her.

Anniversary 1

January 26, 2020
by Tricia Osterholm
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Fighting the Fear

blackandwhite
I woke up in fear again today. I can’t remember what I was dreaming about, but the anxiety was overwhelming. This is happening more frequently lately, most likely because the five year anniversary of our daughter’s passing is coming up in March. Not a day has gone by that I haven’t thought about Kayln. As the anniversary approaches, though, the emotions and memories increase in intensity. Most of the time I try to block out the painful memories of the day we lost her, but an anniversary seems to force those memories to the surface.

About a week ago I woke up at 5 a.m. with an intense panic attack, probably because I had been anxious that my son was going to be traveling that day and I have an irrational fear that I might lose him too. I know it is not healthy to obsess about losing other people I care about, but it is hard not to when I have already lost a child.

Recently I was talking to a friend who is struggling with their teenager. I told her about my daughter’s condition and how this brain AVM affected her, and that I know how hard it is when a teenager is acting irrationally. We did not know the truth about her condition until it was too late. Kayln never knew what was causing all of her problems. In some ways that was a blessing, because she would have been so distressed to hear that she had an AVM in her frontal lobe that most likely could not be operated on, and if they did the outcome would not be good. On the other hand, she never got medical confirmation that her extreme symptoms had a serious cause.

Kayln’s health problems could not be diagnosed quickly and I feel that most doctors did not want to take the time to find the cause. So many people with rare conditions experience the same thing, bouncing around from doctor to doctor, trying to find someone who will actually help. During that uncertain time, I was constantly in fear for her future. And then my worst fear of all happened. We lost her, and it has been a struggle to accept it ever since.

As I work through these issues and memories, I am trying hard to prevent the fear and darkness from taking over. I will do my best to focus on the good memories, I will continue to write about the issues of loss, and appreciate the good in my life.

September 3, 2019
by Tricia Osterholm
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25 Today

Kayln 25
Today is my daughter’s birthday; Kayln would be 25 today. This is a difficult day to get through. I am feeling worn out right now from a multitude of emotions. I imagine what it would be like if I could call her up to wish her a happy birthday. What might she be doing now? All I can do is speculate that she would be married by now, and that she could be busy with a career or maybe as a stay at home mom. These are the things we are missing out on, and it hurts. So now we spend her birthdays bringing flowers to the cemetery and talking about her. We talk about how this brain AVM affected her, how it changed her, how it took her from us. How much we wish she could be here because her brother is getting married later this week and she should be a part of this. I miss you, Kayln, and that will never change.