We were supposed to start this weekend with a basketball tournament, but that was cancelled. With the tournament cancelled, we switched gears and thought maybe we could still go to Grand Rapids, Michigan for the second Christmas Party of the season, but unfortunately no one from our area was heading there as a winter storm was supposed to hit. Instead we stayed home...we enjoyed a VV church service on Sunday afternoon followed by the Calton Choir.
This week the boys had a SNOW DAY!! So.....I convinced Savannah to take one too 😊 Mark joined us for the snow day and lunch turned out to be really cool with Mark playing Subway. I even finished a puzzle with some extra people around to help.
The kids really enjoyed all the snow for the next few days as they kept busy building their fort. I had to actually monitor the kids time outside on one of the days because the temperature plummeted and I didn't want frostbitten children.
The boys had their Christmas Concert this week after it was first cancelled due to the weather. We enjoyed listening to the kids praising God through singing and playing their instruments...we pray that they will continue to serve Him throughout their lives.
Logan had his second injection this week and all went well. There have been a lot of questions asked about SMA and the new medication Logan is getting (nusinersen), so we thought we'd answer the commonly asked questions in a post, and if anyone has any other questions, feel free to ask and we will try to answer 😊
1. What is Logan's actual diagnosis?
Logan's 'main' diagnosis is Spinal Muscular Atrophy (type 1). SMA is a genetic disorder which progressively destroys motor neutrons. Due to a defect in the gene that makes a protein needed for motor neutron development, there is deterioration of all muscles (and pretty much everything in the body is a muscle). So essentially, Logan's muscles are 'wasting away'. Logan also has been diagnosed with albinism (a genetic condition characterized by partial or complete absence of pigment in skin) and nystagmus (involuntary eye movement) - the nystagmus is common with albinism.
2. What is nusinersen (new medication he is getting)?
Nusinersen is designed to increase the production of the protein needed for muscle development by altering a gene closely related to the defective gene. Nusinersen is an experimental drug but results from trails were very encouraging and all the kids who were in the trial are now receiving nusinersen (placebos have been stopped) and they are waiting for FDA approval. Nusinersen is not a cure but 'tricks' the body into not recognizing the mutated gene. There is currently no cure for SMA.
3. How often will he get it and how?
The dosing is by spinal injection (needle in his spine) at days 1, 15, 29, 65 and then every 4 months for life. Logan received his first dose on November 30 and is scheduled for his second injection on December 12 (Monday)
My heart continues to break for the Hiemstra family but I am amazed by the strength of Jordan's parents as they continue to share their story in hopes of helping someone else who is struggling. Here is the letter Jordan's mom shared...
Thoughts from a mother who lost her son to mental illness.
To those who knew Jordan
Jordan Christopher Hiemstra. If you were to describe a few words, this 17 year old teen, he was thoughtful, quirky, creative, artistic and he smiled. He had his secret smile with a twinkle in his eyes, knowing he was up to something. He had so much pleasure in boating, from wake boarding to trying to knock friends off the tube. He loved taking pictures and tweeking the picture into something that was so beautiful. He loved the family dog Toby and his favourite kitten, Bacon. He loved many things. He looked happy.
How can a teen that seemed to have the whole world at the tip of his fingers decide that life wasn’t worth living? How can someone who has friends that loved him, joked around with him, treated him well, decide that he is not worth being around for them? How can a young gentleman, who one moment is playing Christian songs on the trumpet, keyboard or accordian, creating wonderful music, find no joy in life, no hope in life? How can a student that works hard in school, who has teachers and leaders that invest their care into how he matures decide that he is not good enough? How can a son who has parents, siblings, cousins, aunts and uncles, grandparents that love him and care for him not know how taking his life will affect them? How can a farewell letter to his mother saying he loves her so much, he appreciates all she has done for him and her time invested in him decide that this is not enough to live?
We only knew for about 5 weeks that Jordan was suffering from depression and was having anxiety and panic attacks, before he took his life. As parents, how could we not have seen this earlier? How did we miss the signs that he was having troubles already in Grade 10? Are we terrible parents? Are we so much in our own world that we didn’t see this? We loved him so much, did we not show this love to him? My thoughts are this (from hearing other testimonies from those who are suffering), Jordan did not want to worry us so he had a mask on. Even when we thought we had the help in place, he still kept this mask on. The mask was on when he saw the doctor, the therapist, on with his family, on with his friends. This mask shows that all is fine, while deep inside him it wasn’t. He had a mental illness.
Jordan had no idea. He had no idea of all the lives he has touched. From church friends, bus buddies, school friends, SERVE friends, community friends, work friends, cousins, aunts, uncles and grandparents, to Adventure Farm Guests, he touched all of us.
Jordan was a beautiful, handsome young man. But he was not perfect. He was a growing young teen, going through all the struggles that every teen has, but… he had a mental illness. Jordan had inner problems that we did not see. There was a mask that he had on to cover his troubles, his pain, his insecurities, his feelings of worthlessness. Jordan listened to those terrible, evil voices that told him things. Jordan wrote these words, “You’re not really that important”. “Honestly, people will get over you. You’re replaceable.” That he wasn’t good enough to live, that he was better off not here. He also wanted to keep this private. He didn’t want anyone to know, not even his family members or closest friends.
One thing I want YOU to know. He did care about you. From his letter and journal notes he left behind, we do see that Jordan had thoughts that were dark. He didn’t think he had a future, that in Jordan’s words he wrote “I can’t imagine having a future at all, let alone a positive influential life that will lead others to being the best they can be”. He kept most of this to himself. This was all part of the mental illness that he was dealing with. This is not the true Jordan but the sick Jordan. This is a Jordan whose mind twisted things in the worst possible way. This is a sensitive young man that wasn’t honest in sharing how little hope he had to his doctor, therapist and his parents. Who hid this from everyone. He wrote that “I keep my thoughts to myself now. I don’t want to hurt others with my feelings.” He wanted to in the end, keep a distance to protect others.
As parents, we struggle, we struggle so hard with understanding this. But we do know that this is no one’s fault. Yes, we look back and think “What if I did this instead? Was there something I said that made him think this way? Did I do something wrong? Did he not know we cared so much about him? What if….? What if….?” But in the end, we know we are not at fault. No one is at fault. There was not a thing said or done by anyone to make Jordan take his own life. Please believe this. There are no events over the past months or years, that would have caused his depression and low thoughts. If you ever thought you said something wrong, or didn’t do the right thing, this is not what caused Jordan’s pain. Those who went on the high school retreat with Jordan, please know there was nothing, absolutely nothing, that triggered Jordan to take his life. I have heard that he had a good time those two days. We know there was no one thing for him to take his life, we know he planned that Friday night. This was not a sudden thought for Jordan. It was not his first suicidal thought. He wrote there is no turning back after a decision is made.
Part of the grief process can be anger. You may feel anger towards Jordan. Did I have anger? Yes, there were moments that I was angry with Jordan for causing this horrible pain and so many tears. But I know in my heart, that he wasn’t trying to cause my pain, our pain, he was ending his own terrible pain. Anxiety, severe depression, this mental illness, this is why Jordan did this tragic thing. He horribly under estimated the effects of his mistake.
As a mother who found her son at that last moment on the concrete floor, I envision two angels guiding him towards an amazing warm light. His head is turned smiling at one of them, that smile of his, with a twinkle in his eye. He is now in God’s hands, he is now without pain. He is now at peace.
Do we feel Jordan could have gotten better? Maybe, maybe not…. we don’t know. There are so many things we don’t know. Every day, as parents, we struggle to leave the regrets, the unknowns behind. These thoughts will not bring Jordan back. All we can do is go forward, see if we can help someone else who might be struggling, if we can help just one person, it will prevent much pain for a community.
Friends and family, Chris and I care for you. We may not know all of you, but we care for you. Please talk with someone, a friend, family member, teacher, leader, minister or a therapist. Do not hold your grief in. Talking will get you through this. Your lives are changed because of Jordan, your life’s experience has changed. May your life become something productive and fruitful. His mental illness ended his life, but we need to continue to do something good and useful with our own lives. Be God’s children, showing love and mercy to others. Serve others with love and kindness.
Sincerely, with love and care,
Christy Hiemstra
