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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

Life will almost always be unpredictable; it’s just part of the experience of being human. You can do your best to try and control how things will turn out, but even with precise planning and micromanaging, we all have to face disappointments and adjust our sails along the way. Accepting this and gaining new perspectives takes patience, practice, and energy.

For me, social media took the term “keeping up with the Joneses” to a whole new level. It’s easy to go down a rabbit hole and compare our own real stories to the online versions of others. Truth is, everyone has the ugly, unglamorous parts to get through: endless loads of laundry, bills to pay, and in our case, factor to infuse. It’s a never-ending list of redundant, boring, and sometimes nerve wracking demands that make up our daily lives that are occasionally spiced up with a bleed or ER visit. It’s how we cope with these instances that matter; changing my mindset to say “I get to” instead of “I have to” before a dreaded task or demand has been one way I’ve been able to adjust my perspective. It’s not always easy to apply that mindfulness hack, and once in a while our ego gets a nudge when things do not turn out the way we wanted them to.

Destinne_CookiesWe are quickly reminded that we are only human and there’s nothing perfect about it. This can happen when we are faced with a rejection after we tried our hardest or when something we were depending on fails to manifest itself. We feel it when our children struggle, and tend to take it hardest then because we think it somehow reflects that we failed at being a good parent. This applies to all areas of our lives and for those of us managing a bleeding disorder. We tend to get even more unpredictability added to the mix.

Sooner or later life’s storms attempt to wear us down and leave us with a horrible heavy heart. Our faith and perseverance will be tested, and we will fear the worst has yet to come. I’d like to think we could learn a thing or two from one of my favorite Hollywood characters. The protagonist Audrey Hepburn plays in the famous movie Breakfast at Tiffany’s, does a great job describing times like this as the “mean reds” and what she does to lift her soul:

Holly Golightly: You know those days when you get the mean reds?

Paul Varjak: The mean reds, you mean like the blues?

Holly Golightly: No. The blues are because you’re getting fat and maybe it’s been raining too long, you’re just sad that’s all. The mean reds are horrible. Suddenly you’re afraid and you don’t know what you’re afraid of. Do you ever get that feeling?

Paul Varjak: Sure.

Holly Golightly: Well, when I get it the only thing that does any good is to jump in a cab and go to Tiffany’s. Calms me down right away. The quietness and the proud look of it; nothing very bad could happen to you there. If I could find a real-life place that’d make me feel like Tiffany’s, then – then I’d buy some furniture and give the cat a name!

Sunrises by the ocean and cookie decorating are for me what Tiffany’s is for Holly Golightly.

Over the last three years I have be surprised to learn the amazing power of a cookie. At a time when I was going through some rough waters, a friend introduced me to cake decorating. While I dabbled with cakes and cupcakes for a bit, I found myself lost in the possibilities of cut out sugar cookies. What started out as a hobby of baking and decorating sugar cookies has turned into home based business and a source of pure joy and satisfaction for me. Cookie decorating gives me a sense of control in the somewhat uncertain world we live in. From the first cups of sugar and flour to the finished decorated cookie, I get lost in a creative sweet zone that allows me to be as precise and detailed as I want. In return I am rewarded with little works of confectionary art that are a true expression of how much effort I’ve put in and that I hope will bring smiles to others.

DestineeCookiesWhen I submerge myself in cookie decorating, or watch the dawn sky come alive with the rising sun on the horizon of waves, it’s like a reset button for my emotions and a sort of therapy if you will. Cookie decorating has surprisingly given me a sense of contentment where I control time and the outcome is a direct result of my efforts. When my final touches are added and my confection is ready to share, I hope my passion comes through as a reminder to have some fun and appreciate the little whimsy things in life.

At this time of year in particular, how do you chase away your “mean reds” in a world of unpredictability? Whether it is a sunrise or cookies, share your happy place and how you get there. You never know what the possibilities may hold for you.

Destinee lives in New Hampshire with her husband, Ken, and twin daughters, Madison and Morgan (16).

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*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.





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