Dylan W Levy
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Stress...Whats New.

2/21/2011

10 Comments

 
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The weekend has come to a end and another stressful week of Hospital trips is upon us.

We were able to make a day trip today to the local Stanford Shopping Center and just attempted to be normal and feel human again.  The sun finally came out and was shinning intermittently throughout the day (over the last 5 days its been dumping rain in this area), but it was still nice to get out and look around at things for Amber...she has been running low on clothes and it was nice to get a few things to make her feel like a pretty women again, which if you ask me is good for mental health and she deserves it after all she has done and been through over the course of the last few weeks and honestly years.  I went looking for and found a dragonfly pendant necklace (it was our 6 year anniversary while we were in the hospital last week).  For those who don't know, dragonflies are suppose to represent healing and new beginnings...so I thought it was very fitting and it looked very pretty on her, she seemed to love the surprise (we never buy gifts for each other, so it was a nice unexpected treat on her end).  Amber has truly sacrificed everything for Dylan.  I wish there was more I could do for her to show her how much I appreciate what she does and has done to get Dylan to where he is.  She is an amazing person and I'm so lucky to call her my wife, mother to Dylan, and my best friend.  Even though it was a better day, I keep getting overwhelmed with anxiety and stress.

I can't help but feel very stressed at this moment.  I have been worried about my place of business since all this even became reality and the thought of me not being there is really hard.  I have spent the better part of 7+ years helping build our company to what it is (LIC Motorsports), not that its anything special but its both me and my brother's lively-hood and I have invested so much time and energy into it...I just can't say 100% my mind is ready for work mode.  I feel like this is the issue with most self-employed business owners; you become tied to your work.  I know over the years I have sacraficed a lot to get our business to where I wanted it and being away for these last 2 weeks has been very challenging to say the least.  I know my brother can handle it but I have dedicated so much personal time that I feel I deserve the break that I need to be with my family but at the same time, I can't be away any longer than what is needed.  I really feel like I'm in a awkward predicament and I don't want to let down my brother or my family during this time.  Onto another stressor.

One of the more stressful things about having dealt with a child that has liver disease over the years is the constant "unknown".  This unknown has kept me up very late at night, made me physically ill, and more often than not will dictate ill feelings for the scary/unknown future and what it may hold.  Now most will say, "live it day by day", "live in the now only", "don't stress about the things you can't control".  I hear all these often and there is nothing wrong with saying them but that's really where it ends....try living them; its a very different thing to do and is very hard to say the least on my end.

We have contemplated that if all goes well this week that we would move back to our residence and make the trek back and forth to here 2x a week.  The more and more we think about it, the more and more I realize that its not going to work out.  I don't think its fair to have my wife and kid get up at 4am 2x a week (and that's under best case scenario, if his labs are not ideal one day...you come back daily until its back under control and/or stable).  I'm eager to get back to our lives under our own roof but being next to the hospital seems very critical as well, after all it's why they say a min 6-12 weeks living near the facility.  Really not sure what to do right now, I'm not trying to make this harder on anyone, albeit my brother or my wife/kid.  Just always seems like I'm forced to make decisions that aren't the most comfortable.

Its now past 2am in the morning and my insomnia is about as bad as I've ever had it...not sure what else I can do but think, type, and attempt to just do my best.  I'm stressed for labs tomorrow AM but hopeful that everything is still on track.  Until tomorrow, which I hope is uneventful

-Noah

10 Comments
mike maddox
2/20/2011 11:07:36 pm

Noah you are a great father and husband and are doing great!! probably better than I would given your situation. Im sure adam can take care of the shop dont worry about that you are already stressing your self enough. I hope all goes well with dylan's labs he is such a wonderful kid and very brave. my son keeps asking about him and really wants to play lego batman with him. take care and say hello to amber (even though I have only met her in passing she is a wonderful mom just like you are a wonderful dad. have a great day ..... mike maddox

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Kerryann
2/21/2011 03:04:35 am

I can't even imagine the stress you are going through, physically and mentally.
Just keeping you guys in my prayers that you make the best decision possible and things can work out as easy as possible(considering thr situation).

Reply
Rebecca
2/21/2011 12:30:56 pm

I was so relieved to see your posting just now. I have been checking all weekend for an update on Dylan. I came across your family on Liver Families and have been closely following Dylan's story ever since. My daughter was born on November 19th,2010. Within days it was suspected that she had biliary atresia but it took until January 6th to finally get the Kasai done. We learned last thursday that it's not working. She will be evaluated for transplant next week. My husband is devastated that he cannot donate to her because of his own medical issues and I'm not a match. I'm so happy for your family that you were a match and healthy enough to donate to Dylan. I appreciate your candor with your feelings through all this. I know its hard for people to know how to respond to what is going on, but "you'll get through this", "live day by day", and "she's lucky to have you as her parents" all seem to annoy me. People mean well. I know that. But unless someone is living it, they have no idea. Sorry I'm rambling. I'll be thinking of you guys.

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MOM
2/21/2011 03:39:16 pm

SWEET STUFF,
DO NOT STRESS, THE BUSINESS WILL BE THERE, ADAM CAN STILL MANAGE,WE KNOW THAT YOU REALLY ARE THE COMPUTER PERSON AND THE LIVE CONTACT, BUT YOUR BROTHER CAN DO WHAT NEEDS TO BE DONE IN YOUR ABSENCE, AND HE HAS THE HELP OF JOSE AND KYLE, DONOT STRESS, WHEN IT IS RIGHT IT WILL BE RIGHT TO GO AND START WORK AND I STRESS AT A PART-TIME LEVEL). AMBER AND DYLAN WILL BE FIND AND COME DOWN ON A LONG WEEKEND OR EVERY
OTHER DAY OR TWO, YOU NEED TO HEAL AND S0 DOES DYLAN, JUST STAY PUT FOR ALITTLE WHILE LONGER AND WHATEVER WE CAN DO TO HELP, WE ARE HERE FOR YOU AND THE FAMILY. LOVE MOM

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Stephanie Olivieri link
2/22/2011 12:48:36 am

Noah,
I've been following Dylans story for a quite a while now; (I know Amber from Liverfamilies and FB). I just wanted to say that I think it is great that you are so honest in your blog, years from now you will read this, and think how did I get through it? I know what it is like to have a child w/BA, and post transplant. Analiese is 8 years out from transplant, and it has gotten so much easier, yet there is always a thought in the back of my mind of "when is the other shoe going to drop". I just wanted to let you know that I am thinking of you all, and wish you all the best.

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tabitha cornish
2/22/2011 06:14:01 am

First of all, BOTH you and Amber are amazing parents, Noah. As I've noted in previous comments I do not know your family personally, but I know this to be true. PLEASE don't put added stress on yourselves with worries about work, getting back home, and back to a sense of "normalcy." Just be there for Dylan and for each other...everything else will work itself out. Just give yourself a break, and try to enjoy even the most minor peaks of sunshine so-to-speak throughout this trying time. Your family is in our hope-filled thoughts each and every day!

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Mattie Medina
2/22/2011 07:12:51 pm

Noah,

God loves all of you, and He hears your cries.

TRUST IN THE LORD WITH ALL OF YOUR HEART .. LEAN NOT ON YOUR OWN UNDERSTANDING ..

The Prayer Warriors of Safe Haven Ministries are praying for you, your wife and your precious Angel 'Dylan'.

Hold on Dad - the Lord will see all of you through.

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Graham Hambleton link
2/23/2011 01:01:33 am

Noah - There is not a parent out there that can blame you for your anxiety and stress level. You've been through hell and back and are prepping for another trip. To be quite honest, I think its good your stressed because if you were not, I'd wonder what the heck is wrong with you bro.
Take care man.

Reply
Noah Levy
2/23/2011 09:54:44 am

Thanks everyone for the comments, I'm about to write a new update for the last 48hrs we've been dealing with.

Again, thanks for following Dylan and us on this journey. New update to be up by tonight...just need to clear my mind and put it to the journal.

thanks,
Noah

Reply
Matt aka mpsti05 (nasioc)
2/23/2011 09:58:45 am

My thoughts and prayers are with you and your family. Stay strong for Dylan and Amber. The business will be there when all is well, im sure Adam will be fine without you.

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