A Day in the life…..

Rocking out to some good eighties music, I drove my SUV behind a convoy of Humvees, mesmerized by the beauty of the illumination flares dangling in the air above training areas in Camp Lejeune at midnight. I was making laps around tactical training areas trying to get Maddie to sleep (the vibration of the car has been soothing lately) and I got to see some of the training going on. The way the flares hang in the air lighting the battlefield is beautiful yet so scary to me. It conjures up pictures of things I don’t really want in my head as Brandon prepares for another deployment. It is nice to be back in Lejeune though. I feel reconnected to the Marine Corps and our old life.

I finally headed back towards home when she had been snoozing about 15 minutes. Unfortunately, a cluster of seizures woke her just as we were pulling back into our neighborhood.

We got some sleep during the night, and when we woke up I packed the car yet again for another trip to Charlotte. We will fly out of the Charlotte airport for Detroit Monday morning. I packed the car while Maddie slept all morning in my mother’s lap (this may play in to why she isn’t sleeping at night….)

Brandon called as we were just prepping to lock up and jump in the car. The five minutes I got to talk to him were spent reviewing the details of our will that is being revised in preparation for the deployment. And discussing that we will be filing a grievance against the insurance company when I have time to think about it after the trip. They denied covering our visit up there so we had to switch plans in order to see the doctors we want to see (with additional costs, of course). Our insurance is still so good compared to most people’s, I feel silly even whining, but it is the principle of it that is really irking me. Plus the fact that I’ve wasted time I don’t have jumping through hoops for them. Anyway, moving on….

Driving back to Charlotte I had too much time to think. And I am trying to think about anything but the upcoming week’s testing and the possibility of brain surgery. And the even scarier possibility that brain surgery won’t be a possibility for her. And so I reflected on just how odd a typical day is for me.

You’re jealous, I know…….

Love to everyone,
Liz

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14 thoughts on “A Day in the life…..

  1. Even when we do something that seems perfectly natural for a person to be doing, like driving around, taking out the trash, packing, whatever, it never really ‘feels’ right. It’s just ‘off’, and you can’t really explain that to anyone who isn’t going through something with their child like you are.

    We try certainly to explain it, and we do a decent job sometimes, but in the end, it is such a hard thing to get across how it affects every single moment of every single day, even when you aren’t even thinking about The Situation at all.

    Now see, I know that last sentence will make sense to you. Someone reading it who has never experienced this type of thing might have more of a WTF response. 🙂

    Next week is a big week for us both. I’ll be thinking about you guys an awful lot.

  2. Ken…LOVED how you put that. And it’s true. I’ve wanted to connect the dots SO desperately that I’ve driven myself bonkers at times.

    Liz…how’d you know I was jealous?! You’re good… 😉

    Wishing you the best, sweetie.

    …danielle

  3. Liz…please don’t think a lack of comments from either Torin or I is a lack of attention or empathy (sympathy). IT is simply a lack of comprehension of what you deal with daily. Reading your beautifully written posts brings tears to my eyes and hurts my heart, and leaves me utterly without words in a time and place I wish I had some. When all this is done with and Maddie is better you should take these entries and compose a book so people can see what she and you go through…yet that would be such a personal journey to share….Just seems like the more people who know that maybe more research will be done for those who need it. You are an amazing writer Liz…truly you are. I know the words sound hollow or cheap but if there is anything at all that we can do please let us know. All of our love and prayers.

    Sam

  4. Liz – you are great! I admire you so with all you have to deal with. God Bless and good luck in Detroit.
    Loretta

  5. Hi Liz,
    Sending love back to you! You are an amazing Mom, and Maddie is so blessed to have you as her warrior Mommy just as you are blessed to have such a beautiful and amazing child. Your family, while going through so much,are staying strong together. Please know that you all will continue to be in our prayers, and we will pray for the specialist to have some answers to help your beautiful and amazing child, Ms. Maddie.
    Love and hugs,
    Zanna, Jenna’s mama forever

  6. Liz,

    It’s amazing how looking at someone else’s day can make you think so differently about your own. “A day in the life of” is definitely something that everyone should share…just puts so much of our own lives into perspective… the little things just dont matter much anymore, and the little things with our babies are really Big things.

    Thank you for sharing so much and I pray for the best for you guys next week.

    Blessings,
    Jody

  7. Luckily, there is usually not enough time in the day to “think”. Though I will be thinking about you and Maddie a lot in the upcoming week.

  8. Liz,
    You inspire me and I really am in awe of your strength! It is when I am whining and frustrated with Gabes diagnosis and care, or my own, that I think of you. I then tell myself to suck it up and think of Liz’s strength during a much worse situation! When i am feeling down about my little angel and how difficult his life might be I think of precious Maddie and the struggles she still endures and I know that I could be watching him fighting for his life! We all have our battles that we fight but hearing you tell of yours helps me put mine into perspective! I wish that Maddie did not have to go through all that she has but I am grateful that through it all you find the strength to share your story with us! You and Maddie have been an inspiration and blessing to many people! May God bless you in this next journey you must take and give comfort to you, Maddie and your family during this time!
    God Bless,
    Marcy

  9. You hit the nail on the head. A typical day for us is far from typical.

    You and Maddie will definitely be in my thoughts and prayers this coming week!

    (((hugs)))

    Holli

  10. Liz-

    I just want you to know that I am praying for you Maddie. I love your precious pictures of your daughter, what a beautiful girl. I found your blog through the IS website. I will be keeping her in my prayers and you as well…as I can only imagine where you heart is right now.

    Kandra
    (Kate’s Mom)

  11. First time here and first, I want to say thank you to your husband for his service to our country and to you for your sacrifice in supporting him.

    The supportive exchanges I read between parents in blogland astound me. This is a wonderful place to come and find someone else who understands. Breaking the isolation parents have felt in the past.

    Wishing you all the best on your upcoming trip.
    Safe travel and results that lead to a ‘nightmare miracle’. (Term from danielle)

  12. Thanks for all of the sweet comments.

    It is so true that things just never feel “right” anymore, no matter how normal the task at hand. It is like seeing the world through different eyes, where all the things that were once just “normal” would now be treasured. Of course, I would never want others to go through anything like this, but it makes me want to pass on some of what I’ve learned so that people might take the time to enjoy the little things in life, the things that are so easy to just let slip by unnoticed. I know I once did.

    And Barbara, it is true that blogland is full of wonderful folks. I sometimes actually believe that old adage about special needs parents being chosen may actually be true….There are really some fabulous families in this IS community.

  13. hi liz, just wanted to pop in and say my husband and i prayed for your family tonight. we are also looking at the possible option of brain surgery for our girl. and my brandon leaves for his deployment in 6 days. thank God for He sustains us.

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