sometimes you just don't get what you want...and in the end that's OK...

In the twenty-four years I have been a parent the biggest lesson I have learned (other than pray your heart out every day) is that sometimes you just don't get what you want, and in the end that's OK. 

Today we celebrate July 4th, remembering how hard we fought as a country for our independence. It is a wonderful day filled with parades, cookouts, family gatherings and of course fireworks of all kinds. My husband would add cold beer to the list of must haves and for me it's root beer floats. We had them every year growing up. They were a favorite summer treat. 

Over the years we have shared in many of these activities with family, friends or both. We watched concerts in the park as our children played by our feet. We dipped into the pool holding Miss Courtney, passing her between Jerry and myself, as Jonathan cannonballed close by. One year we even climbed/pushed Courtney's wheelchair up a small mountain to watch fireworks over a national park. 

The past few years have brought us a different kind of experience on holidays like today. Miss Courtney can no longer handle the intense shift in heat/humidity that a July in Northern Virginia brings. So no more outdoor picnics or fireworks. Since she needs to be tube fed every two hours it makes it quite challenging to go very far away from home. Four hours is about her limit and a hospital has to be within thirty minutes. Since our home is quite small  (1100 sq ft including garage) hosting a gathering of more than ten people is challenging to say the least. 

Last night was a rough one here. Miss Courtney was seizure free for SIX days and then wham! Four seizures in two hours. There was a lot of holding, rocking and soothing my daughter into the wee hours of the morning. Sleep came about 2 a.m. for Courtney and Mama. I am just so grateful that we avoided a trip to the hospital. It was close there for about 30 minutes or so, but we managed her care without needing intervention. Thank you Lord.

As much as we would like to be out an about, enjoying hot dogs, funnel cakes and popcorn, table tennis matches and badminton, we are called to be home with our girl, where she can be safely cared for and loved on throughout the day. 

I think this loss of freedom is one of the hardest aspects of being a caregiver to my beautiful daughter. 

I am spontaneous by nature and love to just pick up and go. Adventure is my middle name. Now, that is a near impossibility. Being completely truthful, some days are harder than others. OK, maybe that's being all happy dappy. Some days it's excruciatingly lonely here in this house. Some days, there is a happy balance of visitors and tasks to accomplish. Some days all that gets me through the day is knowing that this is what I always wanted. To be a Mama and a homemaker. Yes, it doesn't look like it did in my sixteen year old head, but it is a dream come true, so I praise the Good Lord for the answer to prayer and move through the chaos as best I can. 

I am not a saint but a sinner. I am just a Mama who is trying to take care of her daughter who cannot care for herself. I am trying to find the joy in the every day. I am trying to answer the call God gave me. Remember...God doesn't call the equipped. He equips the called. 

I learn as I go. I pray as I go. I fall as I go. I get up and go again and again and again. 

Sometimes I don't get what I want and in the end it's OK. This is just a season in my life and I know how it will end. I am at peace with that which in turn gives me peace about my lack of freedom. 

So today I have two simple jobs. To pray in thanksgiving for the freedoms this beautiful country affords me and to hold my beautiful girl who was given to me to love and care for as long as the Good Lord chooses.

In the end, I wouldn't have it any other way.  

Wishing you all a Happy July 4th!! May God Bless the United States of America!!

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