Tuesday, October 3, 2017

Remember What Makes You Smile

When someone you love or you live with a chronic illness there are times that feel as if you are frozen. Motivation slows down. Thoughts don’t connect as quickly as they should. 

This is where I am. This is where I’ve been. 

I can blame how my kids are dealing with their issues, Lupus fog, a Celiac attack, or depression. Although it may help distinguish what is going on in my body and mind, blame does not help. My mind is not at ease. So how do I move forward. 

There isn’t one solution but here are a few of  the strategies I use to keep moving forward:

Give myself a break. Take time to shut down. Read. Netflix binge. Make no apologies for what needs to be done and remains undone. 

Move slowly. Choose one thing to do today. Do it. Be thankful I can.

Choose five things. Before I go to sleep I write down five things that made me smile today. Even if it’s just a little. 

Assess my body. What physical symptoms am I feeling? Do I need to contact a doctor?

Assess my emotions. Where are they coming from? Am I dealing in a healthy manner.

Pray.

Repeat my mantra. When my heart is overwhelmed lead me to the rock that is higher than I.

Give myself grace. 

Living with an illness is hard. Living with children with illness is hard. Sometimes it’s harder than others. Sometimes it doesn’t make sense. Sometimes it’s overwhelming. 

In those moments I’m overwhelmed, I can take a deep breath. Remind myself this is just a moment. I’ll get through it. Good moments will come too. 

As this past month has taught me, I may have to take A LOT of deep breaths. Take a few breaks, see my doctor, help my kids process their struggles, visit with friends and talk deeply. Most of all give myself the grace I need. Lower my expectations and remember what made me smile.

What made you smile today?



Wednesday, August 9, 2017

The Couch Is Calling


Every year my plan is to start the school/work year off with a clean house. For myself a clean house is a happy place. I 100% believe the rest of my family find their happy place in piles and chaos. Binders make me happy. Binders contain my mess. My life, like my binders, can not always be kept neat and tidy. So, I am doing everything that needs to be done to start a neat and tidy school year. Care plans, behavior plans, 504 reviews, doctors appointments. As I type, I'm on the phone rescheduling appointments to fit another in. Just a note, taming my compulsion to constantly multi-task is on my list to improve on my mess.




I am surrounded by my mess and I HATE messes, but I may have made a breakthrough. This mess, that is my life, I am pretty proud of it. These kid's, who are strong, fight everyday. Overcoming battles I can only walk alongside. This husband, who works long hard hours, stands by my side as I complain how crummy I feel.

This mess is my life.

This mess is what it takes to make sure my kids have the best fighting chance. It is what allows me to have time with my husband. There will always be laundry and dishes. Paperwork and doctor's appointments.

Time will not always be. So, I am going to go lay on the couch. I'm going to rest in the midst of my mess. Tomorrow the school year begins for me then this weekend our annual Acts 2:42 Camping trip. I am out of time. I could allow myself to be overwhelmed by all that still needs to be done. I could also recognize my limitaions as a fighter of Lupus and Celiac Disease. Recognizing my limitations gives me time. Time with family. Time with friends.

Yep, the couch is calling.

Friday, July 14, 2017

Hope Through the Smallest Progress

I cried in the doctors office. Okay...I cry a lot. Happy tears. Sad tears. Angry tears. Frustrating tears.

These were happy tears...in a doctor's office at that! We have brought the A1c down. 

Being the parent of a Type 1 Diabetic, we often feel we are on trial.  We hold our breaths until the nurse walks in with the one number. The number that decides how well we've controlled the Diabetes. Basically how "good of a parent" am I. Now, there is no guarantee that if we do everything right her A1c will be perfect. Type 1 Diabetes is an Auto-Immune disease, there are factors way beyond our control. 

As parents of a child who's life depends each day on insulin there is a responsibility which weighs heavy on our hearts. Each one of us has spent nights by our kids beds. Set alarms every 2 hours. Rushed to the hospital in fear. 

And we are all gaged by the A1c. Our daughter has lived with Type 1 for 10 years and until this day her A1c has been in the danger zone. We are still not at a healthy number but it is progress. 

Progress, even the smallest, gives us hope. We hope for less highs and lows, a little bit of normal for our kids.  A little encouragement to keep them going...happy tears to balance out the frustration tears.

Monday, June 5, 2017

The Lazy Mom

It always seems the school year goes slow, then without any warning summer arrives. 

I used to dread summer.

Summers are hard for our family. With severe photo-sensitivity because of my Lupus I have a short window of being outside. Before 9am and after 6pm, otherwise I am useless for at least a day or two. I spent the summers watching my kids from the window or the shade of a tree. The kids new I wouldn't be joining them on the playground or in the pool. 

Then there was the day, while I was sitting in the shade, when one comment broke me. The lazy mom. It was only one comment. My heart hurt. My kids were four and two. I knew they were safe, they knew I was always in view. My kids never complained. 

So, why did I let one comment bother me? In all honesty...it was what I thought. I hadn't dealt with what parenting with Lupus would look like. 

As the kids got older they never questioned why we went to the park at night or had limited play dates outside. They didn't know any different.

Parenting with Lupus will have its challenges. There will be events I miss. Lots of naps. Sudden stays with friends. Visits in the hospital. Dad will cook via take-out. Summer days spent binging on tv. Challenges are what we face every day and have strengthened our family. We wouldn't have become the people we are without challenges. We have to take the good with the bad. And maybe we appreciate the good a little more. 

I don't dread the summer as I once did. I've become quite content to sit under my umbrella. Watching from the shade, I've slowly embraced my limitations. I will never be afraid to speak up and share what having Lupus is like to someone who is quick to judge. But, most of all, I no longer believe I'm the lazy mom.

 

Thursday, March 30, 2017

What Was I Thinking

What was I thinking...

It's been seven days since I've spoken to my daughter. Seven days without what's your blood sugar, did you bolus. Seven days while she is 1,759 miles away. And not a word. 

But this is a good thing. I couldn't be more proud of her mission focused heart. She has overcome so much this past year. 

When she started asking about going on an overseas mission trip I wanted to tell her it's not possible. You have a chronic illness. You'll be to far away. I took the cowardly way and left it up to her doctor. And to my dismay the Dominican Republic was one of the few places they would approve her to travel to. I was expecting (okay I was hoping) they would say no. 

We applied for a passport. We packed her bags. One filled with medical supplies. We reviewed emergency pump procedures. Obtained a letter to travel from her doctor. We said good bye. 

My heart overcome. She's growing up. 

In two days she will be flying home. In two days she will have proven how strong and mature she is. She will be home with memories of a lifetime. She will have proven to herself that living with an illness has it's trials but she can still embrace a life full of adventure. 

What was I thinking...

I'm thinking she is going to be what I've prayed for her to be. 

Kind. Compassionate. Strong.

Not Fair

My brain has been a little foggy but for once Lupus is not at fault. Welcome to Celiac Disease. 

It turns out it's been around awhile. My digestive track is damaged throughout. I've lost the ability to absorb nutrients. The treatment no gluten. Never again. Not a bit. No cross contamination. It will take at least 6-8 weeks for healing to begin. Some of the damage unreversable. 

I begin a new normal. New normals are nothing new for our family. Part of the process of accepting a new normal is anger. 

It's not fair. 

Life isn't fair. I can't even count the times we've tried to explain to the kids why some people suffer with illness and others don't.

So here I sit crying because I'm exhausted and in pain. I made myself a gluten free birthday cake but I used the sifter which I last used to make bread. I've been miserable all day. All because I cross contaminated. Turns out even the smallest amount of gluten will make me sick. It tasted okay but it wasn't the same. And now I'm crying . Then I'm angry because I'm crying because I'm angry. 

I seem to have been here before. The whole sunscreen and hat rebellion. 

I remind myself it's okay. Be angry. Acknowledge my frustrations, but don't dwell there. Dwell on what I've overcome and what I can overcome. 

It won't be easy. So dwell on what I know, I've learned to live with a chronic illness. I've overcome fears, anger, disappointments, and frustrations. 

I've chosen to love a life that is just not fair and I'll choose to again.

But really...I can't be in the sun and now no cupcakes. I really love cupcakes. Maybe it's a good thing I can't have fluffy, moist cupcakes. Nope. Not there yet, not fair.

I really, really love cupcakes.

 

Saturday, March 18, 2017

Stand in the sun, breathe in the woods

Being in remission, I am gifted each day with limited pain. I take advantage. I stand just a little longer in the sun. Lose myself in the woods. Listen to Jim and the kids intentionally. Cancel less with my friends. 

We aren't guaranteed any time here. I could spend every moment questioning why I am here and my sister is not.

This year I turn 40. The year I was told I'd never see. 

My senior year my youth group leader asked all of us what we wanted most in the future. My answer...I want to play bingo. See the sunset from the porch. I want to be old, sit with my friends and family and reminisce. Share memories of those we've lost. The trials we faced. The lessons we learned. The gifts we gained. 

I knew from a young age tomorrow is not guaranteed. I'd lost my sister. And now I was given a time line. Have you made arrangements? The social worker will be in to help set up hospice. I was 21. We somehow were blessed with more time. We had a beautiful girl. A year later I was being told to have an abortion. Time with this beautiful girl or a chance to have another child. Do you want to see her graduate? You're body will give up before your 40. The doctors words. I chose the risks. More Lupus flares, harder days. 

And here I am. 40. 

My senior year I saw myself at 40 with a career in lobbying for health care in Washington. Maybe I'd be married have a couple kids.

And here I am. A very proud lunch lady, married for 18 years, and two kids I'd risk it all for again. My body is damaged. Brain function lost, where did I put the milk, did I know you, did I put my pants on. Arms and legs that forget how to work. 

Every pain worth it.

Tomorrow's not guaranteed. I have today. 

A day to love the hard to love, forgive the unforgivable. Stand in the sun, breathe in the woods. Argue and make amends. Watch the sunset. Love.