Without a Crystal Ball

Our Journey through Chronic Illness

Yesterday I had the amazing opportunity to help a friend expand her business. She is a gentle and passionate woman, that wants to remind women that they deserve to take care of themselves. She has an amazing subscription box program where you can send a box to a friend or woman you know that deserves a little pampering. I was the benefit of a box like this in December. It came in the mail after a really rough week. There was a delicious smelling soap that made my skin so happy. There was a vial of oils that has opened up the skin on my face and lessened the acne I get from stress, and there was a beautiful gold scarf that I wear on the days I’m not feeling very fabulous. It was a simple reminder that even though I don’t know it, there are people watching and seeing me struggle and they want me to know they care. If you want to learn more about this amazing program, you can do so here: The Purple Moxie

purple Moxie

As a way to help her launch this amazing program, I agreed to sit down with her and interview about how I’ve been able to turn a very difficult situation with managing Von’s continued health conditions into a way to help others. The interview was a lot about Von, what makes him sparkle, what makes him special, a little about his condition, and why I started this blog. Then there was a question I wasn’t expecting. It was a question that actually nearly put me in tears. It wasn’t something I thought about or something I ever considered. The question was so simple and straight forward, and it knocked me back a bit in my chair. For a moment or two I had to take a few deep breaths to collect myself. The question was: How do you handle the stress of the unknown and the difficulty of this situation? Not a ground breaking question. But not something people ask me often. It made me think. Wow. How do I consistently manage the bad news, the heart break, and the unknown prognosis of Von’s disease. In that moment, as I answered, I realized that this was an opportunity for me to share here what I do to manage the adversity in the hopes those reading may find benefit. I have a list I gave to her and I would like to share here.

Prayer

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This isn’t something that everyone does. I totally understand that Faith and your journey with God or without God is your personal journey. However for me, I spend my quiet time praying. Often I have a running dialogue with God during the day. There is always a list of everything I would love to have for Von. Often I pray for a cure, better services, continued good health for Todd and me, and strength to get through another day. Lately, in my prayer I have been thanking God for letting Von be my child for another day. I know that Von will not be here forever, and that I might out live him. Von has multiple life threatening illnesses, and to deny this would be unhealthy for me. Each morning I start by thanking him for allowing me to be his mommy, I ask him for Von to have a good day, and for me to have the strength and determination¬†to manage the disease again today.

 

Writing

writescaresalittle

Whether you are a writer or are not a writer. One of the best ways to release your thoughts and feelings is to write it out. Many therapists will tell you that it’s a way for your body to release the negative emotions, and it’s a private way to put your feelings out on paper. It’s a way to get the feelings out, but also it enables me to go back to it, read it, evaluate it, and decide how I feel about it now. There are times my writing is raw, and I share with others because there is a rawness in this world, and the only way others will ever understand is by how I explain it. It’s difficult for me to share verbally the challenges we face, but writing is a blank piece of paper safe of judgement, and every time I write there is a freedom when I hit publish. I know someone out there will see it, read it, and it will resonate with someone else. When others read what I have written, I feel less alone.

Faith

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This isn’t the faith in God kind of faith. This is having faith that things will work out in a way that you can handle. No matter what is thrown at us, I always, always have faith that we will be able to cope with it and manage it. Our challenges have been great, but I’ve never allowed myself to be stuck in the sadness. Every day we push forward, we work on feeding, therapy, and go to the doctor to stay on top of everything. We as parents know the more proactive we are in his care, the better his long term prospects will be. I have faith in the doctors, the nurses, the therapists, the social workers, and the family and friends we have collected along the way. I have faith that everyone is rallying around us and praying for us. I have faith the doctors are going to help us with providing us information that will enable us to better keep Von safe and thriving. I have faith that no matter what happens to Von, we will get through it because we are a strong family and we will not allow a disease to bring us to our knees.

Laughter

Katie Quote

No matter how hard our days are in this house, we make a point to laugh every single day. We find time to rough house with Von, tickle him, play with him, and after he goes to bed we have time to be silly together. When your life revolves around disease and the potential death sentence of that disease, you have to laugh or you will cry. We allow ourselves to be silly, do goofy things for Von, and we never take ourselves too seriously. Finding ways to make Von laugh, makes our hearts heal and smile. Being goofy and dancing to a song for Von, shows him that we aren’t just his caretakers but we are also his parents and friends. We want him to smile and laugh. We want to smile and laugh. Everyone deserves to laugh no matter how difficult their circumstance.

I hope this provides a bit more insight on how we manage it, and perhaps you can read and find things you can take for yourself too. No matter what we do as care-takers of medically fragile children, we have to remember that taking care of ourselves is just as important as taking care of our children. We are valuable too.

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