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Showing posts with label caring bridge. Show all posts
Showing posts with label caring bridge. Show all posts

Tuesday, June 18, 2013

Expecting the Unexpected - Contributor Post

Kim Wright who blogs over at No Progress Without Pain is one of the strongest women and mothers I know, full stop. She has ridden through tough times, smiled at the good ones, and braced for more. This post is just one of the reasons why she should be president of the world.

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All my life people have told me I need to expect the unexpected. I think I’ve been told that so much it might be at the root of a pretty serious anxiety disorder that I have. It’s taken me a long time but I’ve finally realized you can’t do it. There’s just no way to expect the unexpected.

To be completely honest with you there’s very little way to expect anything in life, and just when you think something is a constant it’s my experience it can change on a dime. I make a habit of trying not to make promises to my daughters. I guard our plans with careful wording. Plans fall through, things change, and they certainly don’t always occur, as we desire them and we have to adapt and overcome. Simple things like play dates change all the time and if I utter the words “I promise” it’s a death sentence to the plan, you can almost be sure it’s going to go up in flames. I don’t know why that is, maybe I just have bad luck, but that’s my experience and I’m a little sick of working myself up and my family up when things don’t go as I plan.

I have a special needs daughter who just had surgery. Dorothy has Conradi Hunermann Syndrome, and we travel 7 hours each way to have her VEPTR growing rods that are used to treat her severe scoliosis and breathing issues expanded. If you are interested to read more about her syndrome and treatment you can visit her caring bridge which admittedly I don’t update as much as I should. We have made the trip every 6 months minimum so when I say it wasn’t my first rodeo at planning a surgery trip I mean it. At this point I’ve lost count, but I know she has had more than 14 surgeries and she’s only 6 years old.

Her surgery that occurred last fall I planned on going easy, like others. I told our house sitters we would only be gone a couple days, I promised her such things. Just like usual when I make a promise it went up in a fiery inferno of doom, instead of a couple days we were gone more than a week. Instead of the surgery going well it went horrible. We were worried and sick and stuck in ICU beds hearing stories of “flaky bones” and bone grafting and waiting on big icky back braces that she’d have to do her first half a year of kindergarten in.

So this time around I planned for the worst. I worried and fretted and my daughters surgeon was even fairly concerned about my inability to form coherent sentences by the day before surgery. I told our house sitters it would be a long haul, and I balanced credit cards to see how much more debt we could possibly juggle because hotels and food add up. Just like that though, this surgery was the easiest one I’ve watched her recover from. No surgery trip is easy, but I really didn’t need to make it as hard on myself as I did if I had just let it be and planned like I normally plan

I could have taken a moment to breath. I could I stepped back and maybe formed those sentences more coherently, and I could have gotten a few extra full nights sleeps in and avoided being a babbling crazy person who deep cleaned every room of her house like maniac in expectation of being gone for weeks.

I really can’t plan for the worst all the time, I shouldn’t plan to expect the unexpected because the unexpected could be more terrible than I can imagine or it could be much better. Sure I have to be an adult about things and be ready to handle what comes our way without it breaking me apart but the way to do that is not planning for every unexpected scenario. I think a better way at least for me to approach plans is bending and adapting to them as they come. I’ll still guard my promises to avoid those flames of doom whether they be tantrums from missed play dates or fiery pits of financial ruin from two unexpected weeks of hotel stays.

From now on though I’m going to do my best to not try to expect the worst case. My daughter’s surgeon told me he just “takes what her body gives him and works with that.” I think that’s a good guideline for life, take what it gives you and work from there.





 

Wednesday, February 16, 2011

Finding Evan's Heart

Have you ever seen a miracle?



Now you have.  Meet Evan Davis.  He and his brother Finn were born 16 weeks early, on August 1st, 2009.  Evan essentially has only half a working heart.  He was born with Hypoplastic Left Heart Syndrome.

No baby has ever made it in the world born before 36 weeks gestation with HLHS.

He is a miracle.



He's spends his days in hospitals, his nights being watched over by medical professionals, his parents, and as his mother would say, by God.  He is waiting, ever patiently, for a heart.  Every day he lives is another day he makes history.  He is waiting for a heart, but the one he has spends every beat loving those around him, and being loved in return.

HLHS is a rare congenital heart defect in which the left side of the heart is severely underdeveloped.

In babies with HLHS, the aorta and left ventricle are very small, and the aortic and mitral valves are either too small to allow sufficient blood flow or are atretic (closed) altogether. As blood returns from the lungs to the left atrium, it must pass through an atrial septal defect to the right side of the heart.

From the time he was born, Evan's family was told he would not survive.  He's gone through more trials and traumas in his short life than most of us could ever fathom.  Yet, each time the doctors told his mother that it would be the last time, little Evan came up fighting.  Little Evan survived.  I could go on and on about him, but, really, his mother does it best in her own words.



"Rock bottom for me was the second day of life for the boys. I remember telling my mom - actually I think I dropped into her arms and sobbed, telling her I couldn't do this - I couldn't let Evan die. ... I promised to pray every day and to be thankful every day. To always remember what is at stake ... Soon days turned to months and although everyone still told us Evan was going to die we pushed along and that bond that we formed that feeling that everything was going to be alright grew stronger."



"As I stand and hold Evan's hand, I feel helpless. There is nothing i can do but love him and be there for him ... did you know that I was told to pay attention to Finn because he was the baby whose diaper I would be changing, and did you know that they told me he wouldn't make it through labor?

"Having a baby with a deadly heart condition having any sick kid (means you) have a different respect for things. You may want your kid to be a doctor or to play sports...I just want my kid happy. Every smile to me is him playing sports and graduating from Harvard." 


"As I have said before and told everyone that has kid - enjoy every minute every second because that is how I live my days. I know no matter what no matter how hard whatever the outcome...he will be loved and taken care of. We are so blessed and so lucky to have him right now. I would be happy to take care of him in a wheelchair - I will take care of him whatever way he needs...but if he is suppose to be with God, then that is okay. He is very lucky to be loved by so many people. Thank you God for yet another miracle. We are so blessed."

Take a moment, readers, and think of your own kids. Kiss them and love them and hold them dear.  For whether they are well or struggling for survival, each of our kids is a miracle.

February is National Heart Month.  Evan is waiting for his.  Let's help him find it, together.

For more information on Evan or ways you can help, please visit his CaringBridge site, and his Facebook Page.

Click here for more informaion on HLHS.


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