It really made me think about how I have been processing all that has happened this year. I’ve spent so much time on just wanting it to get better, to just have it over with and I realized it doesn’t happen that way.
Finding our way through our families "normal" life of illness and special needs children.
Saturday, November 10, 2018
Right Path VS Easiest Path
It really made me think about how I have been processing all that has happened this year. I’ve spent so much time on just wanting it to get better, to just have it over with and I realized it doesn’t happen that way.
Tuesday, September 18, 2018
I Want You To Know
Monday, August 13, 2018
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
Thursday, August 2, 2018
Speak Out Against the Darkness
Wednesday, July 25, 2018
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
Saturday, June 23, 2018
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!
Thursday, April 5, 2018
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?
Tuesday, April 3, 2018
Whole30 take 2: Doing Life in the Mess
Saturday, March 31, 2018
Once More
Our church has a Stations of the Cross 24 hours of prayer. It is a time to reflect, pray, and experience Easter with art. During my time tonight I found myself going between a drawing of Peter’s denial and a carving of the empty tomb.
I feel I am at a place that needs resurrected.
I opened my bible to read more about these stations. This is what I first opened to:
Once more.
My soul is yet again in a state of unrest. I deny God’s power even though time and time again he has been good to me. I am not the first to deny Jesus. Peter denied Christ three times the night before Jesus was crucified. He witnessed Jesus perform countless miracles. The dude walked on water, with Jesus. He still denied knowing him. He was in a state of unrest.
Even though I have seen God’s power in my life, I too deny him. I am denying his hope. His power to heal, how deep will our scars be? Will he deliver justice, how many families must suffer? We see a glimpse of healing, then it is gone. We sit with the elephant in the room. When will my soul be at rest? When will I stop denying his power?
Was Peter, too,looking for rest after his denial of Christ? In Luke 24 when Peter learns of the empty tomb, he runs. He needs to see. Does he now remember the power of Jesus? Does he now know his Jesus, his Lord, has the power to not only heal but resurrect life. Resurrect hope.
Once more.
On this Easter I am running to the empty tomb and in the emptiness I am once more reminded of his power. He will resurrect my hope. He will once more bring my soul to rest.
Wednesday, March 21, 2018
You Are Never Alone in the Fire
Saturday, February 17, 2018
To Be Revived I Must Be Healed
I asked God to revive me this year. Revive. The word I chose to transform my life in 2017. I did not realize to be revived I would need to be broken or allow what has been broken to be exposed.
Revive - to give new strength.
He will renew our strength. Isaiah 40:31...As if we have lost it...
I thought being strong meant I don’t fall apart. There are no cracks in my faith. Everything looks good from the outside so everything on the inside must be good.
Strong...because God will keep me strong. Those who trust in the Lord will not grow weary. They will stay strong. I am growing weary, losing my strength. However, I still believe God will keep me strong enough to not grow weary to the point I cannot persevere. I think... What if cracks begin to form in my trust and my joy begins to crack? Doubt begins to seep in, am I too far past the point of perseverance? What if healing is what I need to persevere? To be revived?
As I have asked God to bring me revival I expected him to bring a fire to my faith. Instead, it has brought me to my knees, broken with no words, calling out Lord, Lord.
I’ve spent years praying for physical healing but never have I thought to pray for emotional healing. Illness has taken a toll not only on my body but on my mind as well. And surely the cracks are now clearly evident. I may greet you with a smile, but I find myself retreating. I haven’t been in a church service in months. As the music begins the tears flow and I retreat. My heart was not prepared for the emotional trials we are now facing because I have not allowed healing to take place. I ignored my emotional health while urging my body to fight. The ups and downs of life with a chronic illness leave scars not only on my body but in my mind as well. It has taken a family trial to bring these scars to light.
And where light is allowed healing will begin. This is where I will find my revival, healing. It is here I will gain new strength, it is here I am challenged to allow Him to heal my heart.
...if anyone is in Christ, he is a new creation; old things have passed away, and look, new things have come. 2 Corinthians 5:17
Tuesday, January 16, 2018
When Lupus Tries to Interrupt a Whole30
I am officially halfway into my first Whole30 and it has been full of highs and a few lows.
I’ll share my lows first but I have a hard time labeling them lows because there are valuable lessons in each one.
It is not a magic cure. I know not everyone has the same results but I was hoping the amazing energy would last. I started off feeling great but my Lupus decided despite my healthy choices to take me down.
Overcoming food issues is not easy. I have dealt with eating disorders in the past and I did not expect the fear. Fears of eating too much, not knowing my weight. I have some work to do.
Highs, these are awesome!
My celiac disease is completely nonexistent. Eating clean whole foods takes away the majority of the risk of being glutened.
Sleep is great!
Learning to notice my non scale victories. I am totally loving The Whole30 Day By Day by Melissa Hartwig. Each day I find encouragement and I am reminded to look for my non scale victories. If you are thinking of planning a Whole30 this is an excellent tool.
Trying new recipes. The Whole30 is one man show at our house, except dinner. Although my family seems to be eating a 2nd dinner, usually consisting of cereal and oatmeal pies, they are served a delicious Whole30 compliant dinner. But 2nd dinner is a real thing at our house without a Whole30. No one has complained. Roasted broccoli and cauliflower rice are now a family favorite. I have accepted I cannot control all the food that is brought into the house or how many dinners some people may eat. I can control saying no.
Saying no is big for me, especially when it comes to food. Food is my comfort when I am sick. So the fact that I’ve felt like I was hit by a truck for the past week and have not focused on food is a giant step.
There are definitely more highs than lows but even my lows are highs. They have opened my eyes to emotions that are just below the surface. Emotions that are ready to be exposed. It will be difficult but I am being given the chance to see if I can really put these lessons into practice. My ability to say no is going to be challenged. I am currently sitting in my doctors office and the visible signs of Lupus are present. Puffy hands that barely move and the no denying butterfly rash. I am officially no longer in remission. Prednisone burst starts today. Prednisone and food control have never been compatible for me. I will be relying heavily on prayer partners and bible verses, along with the lessons I’m learning through my non scale victories. I think I’m going to be alright, but I do wonder how my family will feel about a lock on the pantry.
Here is one of my favorite easy go to meals. Sautéed Salad and Chicken Sausage.
• 2 t Garlic Ghee
• 1/2 Cup Beets
• 3 Cups Kale & Shredded Brussel Sprout
Salad mix
• 1 Chicken Sausage Link
Melt Ghee in frying pan then add remaining ingredients. Sauté until salad mix cooks down about 4 minuets. *Always remember to check your labels for Whole30 compliance.
Wednesday, January 10, 2018
Allowing My Body To Heal
I’ve been planning on completing a Whole30 since my Celiac diagnosis last March. It was suggested by my nutritionist to see if there are other foods that don’t like me even though they taste so yummy. I’ve also had enough of being sick and tired. I know this won’t be a fix all, but if there is one thing I can pinpoint and say - you make me feel terrible, are you really worth eating? I’m good with it. A Whole30 basically consists of vegetables, most fruits, lean meats, and healthy fats. So, real food.
I kept pushing my start date back mainly because my life is hectic and partly because of procrastination. An Asperger teen, a Type 1 Diabetic, who is graduating (a whole other post!), and life with Lupus and Celiac is enough normal I can handle. When our world turned upside down a few months back I really thought no way, I can’t do a Whole30 now. But honestly, would there ever be a good day to start. When January 1 came I decided it was time, I’m doing this.
Day 10 is where I stand today. It’s hard. The food I have struggled with is cheese. I love cheese. I also love cupcakes, of course they need to be gluten free, but they’re not Whole30 compliant either. While cupcakes may be a favorite, dairy is my first love. There are many stories of food raids during my toddler years. I would often be found with a stick of butter or chunk of cheese. Luckily, I’ve overcome the urge to eat sticks of butter but cheese, well just thinking of it makes my mouth water. On day 6 when the kid’s pizza came out of the oven in all its bubbly, cheesy goodness, I lost my mind. I have no idea where this deep feeling of anger and jealousy came from and it was intense. Over cheese.
Hopefully dairy will still love me when I reintroduce it. This is what is great about the Whole30 it’s not a diet. It’s a time to allow my body to heal. At the end of my Whole30 let’s hope there will be a cauliflower cheese pizza in my future. In the meantime I’m going to enjoy my chicken curry lettuce wraps and butternut squash with ghee. Ghee is my new love!