White Flag

Some days we just need a break from our chronic illness.

I need a break. I think it. I say it. I don’t do it in a healthy way. Lupus, Type 1 Diabetes, or any other chronic illness does not allow breaks.

My threshold for dealing with lupus has grown but also has my ability to forgot what I need to do to live my best life with Lupus.

Recently my daughter with Type 1 diabetes had enough. She took a break. And like Lupus there are no breaks. After not watching her sugar constantly she quickly went into Ketoacidosis. She was tired of living with Type 1. 

I get it. 

We want a break but our bodies don’t allow them. If I head out to run errands without my sunscreen I will spend days in bed with debilitating pain and fatigue. One day of not being vigilant with my Lupus and my body rebels. 

We want to take a break and we know it’s not the best for our health. So what do we do. 

As we sat in the hospital I suggested we give each other a break. When keeping track of meds, blood sugar checks, or applying sunscreen begins to overwhelms us we will tell each other. We will wave the white flag and say we surrender, will you help. Remind me to take my meds, slow down and rest, reapply my sunscreen, wear a hat. I will remind you to check your sugar, bolus your insulin. 

There is no reason to go through a chronic illness alone, reach out and find someone you trust. Wave the white flag, surrender, and stop trying to do it all yourself. 

In what areas of living with a chronic illness can you wave the white flag, surrender, and ask for help?

Not Your Normal First Day of School

Today is the first day of school.

Today there will be no first day pictures.

We had one of the hardest weeks. How do you comfort an autistic teen with PTSD? We had no clue, but the best we could offer was space and love. We endured hours of yelling and blaming. He only sees black and white. If you did something wrong why isn’t there punishment. Why do I have to get an education if someone who educated me, hurt me? Questions we don’t have answers to.

I think back and I can recall the first day of school picture from his eighth grade year. His smile, he was ready to start a new year. This picture I hold dear to my heart, it was one of the last pictures I took of him with a genuine smile till recently.

If I could do anything to change that fall, I would. The horrible truth is there are predators in safe places. No amount of safe guards and back ground checks will completely keep our children safe. Our schools are safer then they have ever been. Sadly sexual abuse and violence will still happen.  

What are we to do? Especially if we do everything in our power to protect our children and they are still victimized.

We listen more carefully. Ask more open ended questions. Questions they cannot answer with a yes or no.Watch their body language when they talk about their day. Believe them. Let them know they are loved, they are safe. Question any comment they make that does not feel right. Trust your instincts. Talk with the other adults in their life.  

I wish I could go back. The day he told me about the weird substitute who would come in and talk to him in the bathroom. The days he screamed and refused to go to school but we made him. The day another teacher called me and said you need to come get him, I'm a mom too and I can tell he is extremely upset. I know that if I would have questioned more in these moments he may not have disclosed the abuse then. But, maybe. We could have more evidence, maybe justice. We would have helped our son that year, not two years later.

Please help us spread awareness. Help us let children, who are sexually abused, know they are safe and not alone. They do not need to be ashamed. They are loved. They are survivors.

90% of  children who are sexually abused know their abuser. ~ D2L.org 

Speak Out Against the Darkness

School starts in less than two weeks. After a fairly calm summer, night terrors have returned. I can’t tell you what the connection is, maybe mother’s intuition, but I wake. I stand at his door and hear his wrestling. Nothing breaks our hearts more than watching our children suffer. 

Asking for help is all we have left. And to be honest it’s not much different than dealing with a chronic illness. Life is not meant to be done alone. Sadly, sexual assault is treated differently. In the end all we want is for our son to find healing. And as I’ve said before there is no healing in darkness. 

Healing comes when we choose to walk away from the darkness and shift towards a brighter light.

~Dieter Uchtdorf 

Today I just needed to release my frustration with trying to figure out how to help our son and I can’t be strong for my son when I am struggling with my own emotions. Spinning at our local Y helps me. I have no idea how torturing my body on a bike allows me to let go emotionally, but it works. There was no class this morning, I sat on a bike in the dark and peddled away my  frustration. Allowing my mind to break through the darkness I feel and shift towards a brighter light.

As I was leaving I glanced over and saw the prayer request board. How I longed to speak the truth of what has happened to our son and to allow our community to come behind him in prayer. I have walked past this board over a hundred times since we found out. Each time I passed I told myself this is too much to share. This is considered private.  

THIS SHOULD NOT BE PRIVATE.  

A substitute teacher, who was once in our community and has since moved on, groomed and assaulted our son. 

Today I walked back to the board and picked up a sheet. I shakily wrote the truth. For a moment I debated whether to fill in the contact information on the back. Being anonymous meant keeping this private, remaining in the darkness. I signed my name and asked my community to be behind our son and family in prayer. 

No longer is remaining anonymous okay for our family. Being anonymous only keeps us in the dark.

If you or someone you love has been sexually assaulted please seek help.

www.rainn.org   1-800-656-HOPE

                                                (4673)

**Anonymity was how our family started this process of healing. There is nothing wrong with reporting anonymously. Our family is at a place where we feel the best thing is for our voices to be heard regarding the devastating affects of child sexual assault.

No More Shame

It happens in our communities.

We thought it couldn’t happen to our family.

But it did.

We have walked in a haze of emotions, not sure what to say or what to do. The one thing that comes to mind is there should be no shame. This should not be hidden, it must be brought into the light, then healing will begin.

If my child was physically assaulted it would not be hidden, so why do we make our children feel they need to hide in shame when they are sexually assaulted. Shame has to stop. Because of my own experience I will tell you shame only hinders the healing process. 

When we first found out what had been done to our son we told very few people, allowed the police to investigate. Now the investigation is finished, no charges will be made because there is no evidence. Two years was too late, no one remembers, no one will speak up. Except for our family.

Two years ago our son started refusing to go to school. We assumed it had to do with his Autism. He began hating science, a subject he loved and excelled in. Progressively we dealt with anger, withdrawal, depression and thoughts of suicide. We knew something was wrong so instead of going back to work, I stayed home with him. One morning he made a comment and it all made sense. Horrible, devastating sense.

Our son was groomed, but we missed the signs. We saw them as a misunderstanding of conversation between a teen with Autism and an adult. The second my son spoke his secret all those conversations rushed to our minds. The warnings we missed.

It has been almost a year since our son shared his secret of what happened his eighth grade year. We cannot help but think what if he didn’t feel it needed to be kept secret, what if we decide to stop keeping secrets, to stop feeling ashamed. These kids are not victims, they are survivors. We cannot help them survive if we do not help them heal. They cannot heal if they feel shame. 

Sexual assault will happen to 1 in 10 children by the age of 18. 

While the rate of conviction is high, arrests are made in only 29% of child sexual abuse cases.

About 90% of child abuse victims know their abuser. 

Only 38% of child sexual abuse victims ever disclose their abuse.

These are devastating statistics. What if we stop treating sexual assault with shame and secrets? One less child hurt, one less family devastated by abuse is all we are hoping for.

***This post was written by the suggestion of our son. We will not publicly share details of the incidents that occurred. 

We are extremely thankful to our son’s school, guidance counselor, and teachers who have been supportive in helping our son return to school. To the family and friends who continue to walk this journey with us there are no words to express our gratitude.

For more information on Child Sexual Abuse: 

RAINN    rainn.org

Darkness to Light  d2l.org

Glimpses of Hope

When the kids were little and we found ourselves with an empty cardboard tube we would look through and see each other. They seemed small and far away, only seeing a glimpse of them. They would let go to see all of me and laugh. I’ve realized this is how I am looking for hope. It’s a scary place to be. I have been asking God just let me see you work this out. Let me see this pain is not in vain. Let me see hope.

I did not realize I have been looking through a cardboard tube. Only looking for hope where I want to see it. When life is difficult I look to glimpses of hope to continue on. But what hope looks like may not be what I am looking for. I want to see hope as everything will return to normal one day...justice, healing, no celiac, diabetes, lupus, or autism. Hope may be found in all of this but not in where I am looking.

My vision of hope is too small. Hope comes in an hour of peace, Hey, do you need to talk, walks in the woods, ugly crying in safe spaces, serving others. This week I went looking for hope but I didn’t look to see hope only in my present situation. I put the tube down and started looking all around. And I glimpsed hope.  The boy found a job...a message from a long lost friend...a hot muggy walk in the woods...the most amazing gluten free grilled cheese. These were the moments that brought me the most joy. This is where I opened my eyes to glimpse hope not just in my situation but in my daily life. This is where I am beginning to see hope again. 

Where do you see hope?

Oh and if you ever wondered if God has a sense of humor...I was asked to help on a youth retreat next week. Guess where I’m staying....Hope College!

What Do You Have to Share?

This morning I read a little gift and it was SO needed. Each day is a gamble when you live with Lupus, Celiac, or any chronic illness. Today, I am in pain and after changing out of my pajamas and walking downstairs I am exhausted. Today, we have doctor's appointments. Hello! Today is not a good day...but we don’t get this choice. 

What I did get this morning was a gift of wisdom. As I turned off my alarm I pondered whether to take a quick scroll through social media or open my Bible app. Today, like most days when I make the right choice, I find a little gift. 

Do not neglect to do good and to share what you have, for such sacrifices are pleasing to God.

Hebrews 13:16 

It is easy to become disheartened when you have to say no I can’t help. We forget we each do good in different ways and have different things to share. Recently there have been several families in my community needing meals. I want to do good and share what I have with others but I’m not dependable because it's a gamble to know if I'll be well enough. I used to be frustrated with myself. Now, I know saying no is okay. I have to do what I am able to do, this is all, not what good I see every one else doing, what they have to share.

I may not have money to donate to a cause or energy to provide a meal for a family but I am able to send an encouraging word. What I have most days are words or just a smile. Giving what I have is not hard, it’s just that sharing what I have feels a little risky at times. And what I have to share is not what you have to share. Maybe you are a listener, a doer. Whether you have financial resources, musical talent, the gifts of wisdom, teaching, or listening we just need to use what we have and share it. There is a saying about Lupus. I have Lupus, Lupus doesn’t have me. Yes, I have Lupus, but I also have gifts I can continue to share with others. Today what I have to share will not include getting much physically accomplished (the laundry pile from my last post may have doubled in size) but I have words and a smile. 

What do you have to share?

Whole30 take 2: Doing Life in the Mess

I was planning on preparing for a new Whole30, but here I am just jumping in today. Honestly, I was going to start talking about my second Whole30 weeks ago and do prep, then like my life tends to do, it imploded. So, here I am telling you why I’m starting today because yesterday I had thrown in the towel. 

Our family has lived in crisis mode for awhile now. Some days are hard and you have to reach out and say I can’t do this alone. Our Easter was a nice dinner then full out war. War of emotions and anger. When I woke up, after very little sleep I sat in front of my bible and just realized I can’t do this alone. I reached out for prayer, I turned to scripture that had been shared with me. 2 Chronicles 20, because honestly at this time in our life there are no handbooks for our situation. And it’s hard. And just like King Jehoshaphat we are crying out, We do not know what to do, so let’s just keep focusing on you God. 

Yesterday, I was ready do nothing. I wanted to put on my comfy clothes, binge watch tv, and escape. I didn’t want to make hard phone calls, emails to case workers, and schools, let alone fold the laundry. Having a child with special needs is a full time job and I wanted to call in. But we don’t, because our kids need us. So, I was like no way am I starting my Whole30. And all day I argued with myself. It’s too hard right now.

But it’s giving in, hiding in the car eating my feelings. Hating myself. I don’t want that. It’s not good for me, it’s not good for my family. I remember how well I felt on my first Whole30  and let me tell you life was not peachy back then either. So, I’m going to get off this couch make me some Whole30 approved breakfast of sweet potato and eggs, and jump into what I can control. Today is going to be hard emotionally, tomorrow is not looking easier. This is a long journey we are on but I have to take care of my body and my emotions. On my last Whole30 I felt I could do this. Hopefully life won’t be as messy and I will blog more this time around or maybe I’ll blog more and just ignore the mess. 

So, here’s to getting off the couch and doing life in the mess! Maybe, I’ll fold the laundry, nah, who am I kidding!