Popping The Question

I swore to myself that I’d never ask The Question.  My ability to remain hopeful was stronger if I didn’t know.  But after a particularly disappointing heart cath, well……I had to know.  And so I found myself Popping The Question.  The question where I ask how long a Brave Hero with disappointing cath results could be expected to live.

The answer I was given was both reassuring and heart breaking.  After another heart cath,  more hopeful heart results were shared and I thought that perhaps, considering how well Parker has been doing, that a few years might be allowed to be added to the original estimate we were given.

Reed and I had made a pact though.  Neither one of us would ever ask another medical professional how long they thought our child might live.  It was simply more reality than either one of us were prepared to assimilate into hearts already beat up beyond recognition.

I broke that pact at our last Cardio visit.  I’ve been struggling so much lately, and I thought that maybe…….just maybe I might get a good word and that would help to pull me out of this funk I’ve been in since the end of summer.

The moment I asked I wished I hadn’t.  Reed even looked at me and exclaimed that we had both promised never, ever to ask THAT question again.

And yet I did.

I can be such an idiot sometimes.

hope

Recently, as I was spending some time on my knees, I remember thinking that with all the medical bills we have paid, are paying, and will be paying, Parker should be allowed to live forever.  Then I immediately remembered that for a kid that wasn’t supposed to make it to his first birthday, he’s done pretty damn good.  And that’s just ONE of the miracles we’ve seen in this Hero’s life.

I refuse to believe that there aren’t more miracles in store for this littlest Hodson boy of ours. 

hopeful

Is it unrealistic to want to be able to live your life without the worry of an expiration date having been stamped on the bottom of one of your children’s feet?  Is it greedy to want to regain a time when life, even with it’s problems, felt carefree compared to now?  I find myself wondering if this could be Parker’s last Christmas and will I have enough time to expose him to all the magic of the season while keeping him safe from illness.

I want to feel happy again.  Excited again.  I need to get over this hump.  I’m determined to get over this hump.  I will get over this hump.

I’ll be stronger in my faith because of it.  It will be hard work, conquering this challenge, but the rewards will follow me into eternity.

When I allow myself to be still and I open my heart to the Spirit, I glimpse bits of peace and joy that are right there within my grasp.  All I have to do is drop down the walls of fear I’ve built up and reach out and take hold of these precious gifts.  It’s then that my heart fills with  gratitude so encompassing the only word I have to describe this feeling is hopeful.   courage I can’t think of a better gift.  The ability to have hope.  To have faith.  To have courage.  To have enough of all three that you have the power to make something wonderful happen.  When my hope slips, my spirit withers.  I can’t imagine anyone in more need of being able to feel the spirit of our Father in Heaven than parents of medically fragile children with special needs.

 

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. Tammy, my heart is saddened that your news was not uplifting. Please know we will continue to pray without ceasing for Parker.

    I know the struggle, the fear and the disappointment you have had. I want to share something with you . . . WE, meaning the entire race of people, are not certain of the time or date of our last breath here on earth. The only one that knows, God. Rest in His Peace that His timing will be perfect (although it will be heartbreaking for those left behind). As a Mom, I cannot imagine losing one of my children to death. It would be the most heartbreaking trauma to live through. God will never leave us or forsake us, even during horrible circumstances or death. Enjoy every minute with Parker and your other children. We MUST all enjoy those seconds, minutes, hours, days, weeks and even years we have with our family.

    xoxo

    • Julie, I so love you and your family and the prayers……the prayers mean more than all the gold in the world. Seriously. Thank you for continuing to pray for Parker. xoxo

  2. Ruby McGill says:

    It is helpful to know that even the brightest medical professional cannot predict the life of a child – our 11 year old was given only weeks to live at 6 months of age. At 6 years of age, she was so near death the social worker contacted the funeral home to advise we would need their services over the weekend; at 10 years of age, following a seizure (multiple seizures) and a 6 day coma we were told that she would not survive. She did; she has further deficits, particularly cognitively, but she is still alive and shows no signs of being near the end of her life. I know that can change in an instant, but I prefer to think of her as ‘living’, as opposed to ‘dying’. I hope that your ‘flat’ period will end, and that you can again think positively about Parker’s life. The reality is that we KNOW that our fragile children can be taken at any time; I try to push that to the back of my mind, knowing it will happen, but making the most of the days we have together.

    • Ruby, thank you for sharing your story. It means the world. I tend to go through times when I don’t think about this stuff, and then times when I can’t shake it. I’m hoping I can get to the point where my heart only feels peace. I’m working as hard as I know how to get there. xoxo

  3. FunMumX3 says:

    Hi Tammy,
    I had a personal reality check today when reading Dave Hingsburger’s blog post. While it doesn’t speak to the things that are burning in your mind it may help to know that we are truly the lucky generation (both us and our children): http://davehingsburger.blogspot.ca/2013/12/breaking-silence-today-history-is-made.html

    For how you are feeling… don’t forget to get a dose of sunshine each day if you can (literal sunshine, silly mom, not your sunshine-y boy) so that you don’t get hit by seasonal affective disorder as well… can leave all of us feeling blah in the long winter months. Even just a good dose of light, coz we all know that winter doesn’t always bring blue sky!

  4. Chris says:

    I deleted out my last several replies, so I think I’ll just go with something simple: ((((((Hugs)))))))). And, I’m not answering that question any more. ;)

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