Make a Moment

My husband of nearly ten years is all action and very little talk. This week, he had a lot to say, and it’s all important. 

This blog entry is a message that Steve posted on Facebook. 

Moon-163

June 2015. Photo by Aubrie LeGault, Capturing Grace Photography

2 Nov 2015

First off, a heartfelt thanks and appreciation goes out to all of the incredible support we’ve received from friends, family, and perfect strangers. Now, to the reasons I’m breaking my usual silence:
Never, ever, in my life did I ever think I would be giving an interview to a CNN reporter. Let alone doing a follow-up taped interview to air very soon. Crazy…
What I have learned is that, while I do not find the general tenor of the media to be impartial, you really have to examine and judge the individual doing the reporting. So, when this individual, a medical correspondent, reached out to us, my wife Michelle (neurologist) examined her stories in detail. She struck us a person who does great research, writes well, and displays an unbiased presentation. My hats off to Elizabeth Cohen and her respectful treatment of my family’s journey. She started working with us in July, and our story just came out last week.

I realize that you can open quite a can of worms when you let someone into your home with a camera and bear your soul, pain, and suffering. I trust Elizabeth, even if she may not get final say on what is shown to the world.
For the record, I think my wife Michelle did awesome in the interview. I can’t say the same for myself. Let’s just say that my training to act calm and collected in the heat of battle (which requires disconnecting from my thoughts and emotions) was useless when I started talking about our daughter.
These interviews represent to us an opportunity to reach out to other families who are suffering through their loss, or staring at the imminent danger of losing their loved one; and of putting our trust and faith in God, just like we have with our daughter.

This is what we have learned:  this is our “Fact Sheet”:
1) You are not alone. Well before this story broke, I was surprised to learn how many people have gone through a similar situation.
2) Life really sucks sometimes.
3) It hurts, a lot.
4) Love is powerful, and rises above the pain in ways you may not even grasp yet.
5) Only you can make the right choice for your child
…but if you have questions, don’t be afraid to ask, and keep asking until you get a straight answer. What does this procedure entail, what are the risks? Just because something can be done doesn’t mean it should be done. Care conferences help. In the end though, the choice is yours. And sometimes you don’t have the luxury of time to explore all the options to the depth you need to. (Reference #2, #3, but most importantly #4. )
6) Only you can know the true depth and complexity of the issues at hand.
7) Make a moment (We learned this from our grief counselor. She has been working — playing, really — with J for the last several months.)

I want to expand on this last bullet. Making a moment means stepping away from the battle (to keep that person from dying) and simply enjoying something together. It is creating a moment in time that you can cherish, regardless of the outcome. Why? Love is Powerful.
ClichΓ© but oh so true: stop and smell the roses. Hold their hand. Play a game. Read them a story. Make an art project. Go for a drive. It’s horribly easy to get so caught up in the daily battle, but if you never stop fighting and struggling, you may miss the beautiful person you are fighting for. And before you realize it, there are no more opportunities to be had.
I’m not saying this is easy. It’s been an entire year since we changed our battle plan against Julianna’s condition. We did it because we realized that the harder we tried to fix her through our own actions, the worse off we all were. Every day, I still have to remind myself to stop being so focused on basic care plan stuff and to make time for fun things that she enjoys. When she wants to look out the window at the city lights, or deer wandering through, or the stars, or the moon; I have to squash the task master in me, remind myself that a few minutes diverted is okay, and start reconfiguring her equipment for a trip to the window.
8) Lastly, if you really can’t break away from the routine, then try having some fun along the way. Try singing a favorite song while you work. Something different. Special.

——
If you’ve read this far, here’s a bit more to chew on.
When you’re stuck in basic care survival mode, you’re not really living, and it is draining. It may seem relatively easy at first, but it wears on you. You eventually cling to it. You don’t want to stray off the path lest that be the tipping point where you lose your loved one. Then you turn around and hate yourself for it. Or maybe hate someone else for not helping you prevent this situation. This is a horrible position to be in, but God forgives you/them. Many people have done far worse things and been forgiven those sins.
You have essentially been living not to die, instead of just living (living to love). It’s similar to a basketball team which plays not to lose, instead of playing to win, or even playing for the love of the game. They usually lose and then wonder what just happened. So, instead of playing not to lose, instead of staying locked in the battle of the present, take a moment to take a deep breath, step back from the situation, and accept that sometimes the deck is stacked against you. Maybe you’re not really in control like you thought you were. Maybe it’s time to start blowing bubbles in your drink, make a replica of the Parthenon out of your chips, and build a house of cards (which is what you had already established in life) so that you can blow it over with a simple breath. Take a moment. Show your love, not through some menial but necessary task, but something silly, or different, or tender, or recreate a moment you know they cherished before through word or picture or pantomine.
Make a moment.


During this moment, Julianna danced with her dad while Homie looked on. J is too legit to quit!!  

15 thoughts on “Make a Moment

  1. The wisdom you gain by living in the moment. Years ago I worked on a pediatric oncology unit and I learned from the children that it was better to live every moment rather than worry about dying all the moments they were living. I’ve learned from my daughter with Down syndrome to live in the moment. The beauty your family is sharing is a blessing.

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  2. I just want to say I so admire your family. I admire your strength. I admire the love you have for each other. I admire you for sharing your story with the world. I love that you are giving your daughter the best and happiest possible life she can have, no matter how long her life may be. You are all in my prayers.

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  3. Steve – Im so glad you decided to “speak” and share these words to live by. Reading the blogs, articles, and stories from you and Michelle have been life-changing for me and probably for many others as well. Your family is a living example of God’s love, joy, and beauty. The strength you possess far exceeds anything that military training could provide. Thank you for sharing this message, Julianna’s message, so that others can be blessed.

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  4. Steve, You are a great Dad . I have so much respect for you . Thank you for sharing the beautiful message. Sending you and your family lots of strength , peace and happiness. Julianna is in my prayers daily. She has helped me connect deeply with faith and god again . Thank you dear Julianna .

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  5. I was so captivated by your family’s wonderful journey. I just followed your blog recently and now I am backtracking your previous entries. Thanks for sharing your story, Julianna’s story to the world. Your family have touched me and made me realize a LOT of things. And I agree, J is legit too quit. πŸ˜€ Rock on, little princess. πŸ™‚ Sending much love from the Philippines. πŸ™‚

    Hi Julianna, I guess u know it already but you are pretty and you really look like a princess. Keep smiling. πŸ™‚

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  6. I was so captivated by your family’s wonderful journey. I just followed your blog recently and now I am bactracking your previous entries. Thanks for sharing your story, Julianna’s story to the world. Your family have touched me and made me realize a LOT of things. And I agree, J is legit to quit. πŸ˜€ Rock on, little princess. πŸ™‚ Sending much love from the Philippines. πŸ™‚

    Hi Julianna, I guess u know it already but you are pretty and you really look like a princess. Keep smiling. πŸ™‚

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  7. Thank you for sharing your story and your heart. Your list is perfect. In my personal grief journey, I have learned one more lesson: deep sorrow or pain can and does coexist with true joy. I love the “make a moment” concept. Again, thank you for sharing!

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  8. I just love watching you share the love. Julianna is a star that will always always shine in my heart and I am certain many others. Thank you for sharing. You are changing others understanding respect, love and how important life really is. Much love!

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  9. Beautifully said, Steve. And you were awesome in Elizabeth Cohen’s piece. You reminded me of how my dad looked at me when I was lying in the emergency room waiting to see if I was going to have an emergency appendectomy (which I did – at midnight!). He said he would have done anything to take my place and pain away. I remember how loved I felt as he held my hand while I drifted off into anesthetic slumber. You are a good man, Steve. My prayers are with you, your beautiful Julianna and family.

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  10. “It’s horribly easy to get so caught up in the daily battle, but if you never stop fighting and struggling, you may miss the beautiful person you are fighting for. And before you realize it, there are no more opportunities to be had.” My problems are not much like your problems, but nonetheless, they are there, and I have to fight them. I needed to read this, because lately it seems that is all I do. You have helped at least one person this day, for certain. I wish you and your family all the peace, love, and happiness possible.

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