A New Year

Well, another year has come and gone.  What is it about a simple date that can give you so much hope in the idea of a fresh clean slate?   I hadn't really thought much about a resolution, as my memory seems to remember that of Lorraine Swiss Cheese!   Though, as everyone around me seemed to be thinking of neat ideas, I thought "Why not?"   So, for now, my goal is to write more.   As I began thinking about committing to a certain amount of blog posts, my computer decided to have a mind of it's own.  I started to panic, as I realized how much of my social connections rely on the use of my computer, let alone ordering my special food, banking, well you get the drift.   I prayed to G-d that He would help me and make a way.   A very close friend of mine had put out the word that I was struggling with this.  I am so thankful she did, as another friend of mine was so kind to donate one to me!!!!  I am so thankful for the both of these very sweet ladies as now I can continue to write!  Thank you Kathy and J, you'll never know what this means to me:)  You two have been through so much yourselves and could have easily and understandably bypassed my needs, but you opened your hearts to me.  G-d answered my prayers through you both.  

I have some new comer's that have recently joined me on my journey, and they have specifically asked about my family.  I love getting feedback, so I am excited to share my family with you.

This holiday break has been pretty quiet.  Seth got a few days off from work and the kids and I were on him like white on rice!  Seriously, he is like a rock star in our house.  Anytime the kids here the back door slam (it's an old house and it's the only way the door will shut) they literally will drop whatever they are doing and will bombard him from any direction to see who can get the first hug.  After a little over 12 years of marriage, I never thought my heart would still race at the thought of being able to see him, but it still does!   We have a dog who name is Mya, she pretty much lives at my parents house because she decided she'd rather live in the as we jokingly call it "the retirement village," instead of the "nursery."  The great thing about Mya, is she is always excited to see you.  She'd pull out confetti and a cake if she could!   She barks and jumps up and down until you pick her up.  Well, that's how I feel about our family when Seth comes home, including me.  

Isaiah has been loving winter break as it is giving him plenty of time to work on his latest obsession, Lego's.   You have to understand, I grew up with my sister, so Lego's were not even on our radar.  Isaiah has always been rather scholarly.  While other kids were watching Sesame Street and Dora, he was watching hours of space and dinosaur documentaries on the history channel.   While his mind capabilities are endless, he wasn't a fan of using his hands.  So the Lego's really are a blessing in disguise as he is learning fine motor skills and of course, creating!   Seth was building with him for a while and came out and said "Either he is going to be in the science field, or a dictator of a small country."  I just busted out laughing.  Isaiah is very black and white and likes things to be done just so.   He isn't afraid to tell you what he is thinking, he can get quite authoritative to the point that you can't help but wonder if he really is an adult smooshed into a 6 year old body.    He has certainly taught us a lot.  Every now and then he likes to just randomly ask a question, but really he isn't interested in what we think, he wants us to ask him the question.  So that's kind of his norm.  So he walks up to Seth and says "Who do you love the most?"  Seth of course answers "My family."  Isaiah adamantly replies "You are not supposed to love us first, you are supposed to love G-d first!"  I hear Seth say in a stuttering voice, "well, yeah, that's a given, but I thought you meant..."  I am trying hard not to laugh, as Seth is desperately trying to dig himself out of the hole.  That's Isaiah, by the book.   Still to this day, if we say, "Go jump in the shower," he'll immediately protest that no one should ever jump in the shower and how unsafe it is.  Still he has a big heart.  With all that I am going through, I have begun to realize he is much more aware of what is going on than we realized.  He has asked me questions about death and we try hard to explain that Heaven is a wonderful place.   Just last year he finally realized why we go to the Mausoleum to visit the kids.    I still don't know how he figured it out, but one day Aria asked why we go there.  Isaiah very matter of factly responds, "because Aurora and Eli's bodies are there."  Gulp..   Okay, out of the mouth of babes.

Aria hasn't been too upset about winter break.  Since she would go to school all day every day if she could, I figured she'd be more upset.   She is our free spirit child.  Isaiah actually taught her how to read when she was just 2.  She is always bubbly and happy and is pretty easy going.  Isaiah tells her what to do, and she happily does it.  I don't know how many times we are in the process of talking to Isaiah about not snatching things from her and how he needs to ask.  He'll furrow his eye brows and give you a look that can make you squirm.  Before we can even finish Aria will just happily say "it's okay, he can have it.  I love you brother!" At first it was adorable.  After about the 10th time in one day, Seth would say "Aria, shhh!"   Still, she always gives in, with joy.   We found out this year that Aria is really into art.  I am not a crafty person by any means, so this has been a challenge for me.  Her teacher told me that they have pipe cleaners.  One day all the kids had pretty much dumped all of them on the floor, so she asked them to clean them up.  When she got to Aria, she was surprised to find that Aria had actually made a bracelet out of them!  She said she had really done some intricate work too!   I can already see her in a flowy dress, her hair long, and her apartment covered in paintings and messy beyond belief.   Seth and I find ourselves imaging Isaiah in a 3 piece suit with wingtip shoes, and a briefcase.  Aria will be the love child, with a peace sign painted on her face, and flowers in her hair.  I am fine with that, as long as they make sure to call and visit us often;)  The other thing that I am pretty sure that she probably got from her Nana, is a love of puzzles.  I can't stand them, even the easy ones used to bug me.  Not Aria, she lives for them.  All you have to do is set a box on the floor, clear your throat, and leave the room.  Presto, when you come back, there she will be putting that puppy together.   She's fast too!  Her Nana taught her well:) Even right now, she is sitting on the steps in the dark smiling at me and has  now crawled up into the bed and is declaring that she loves this house and loves snuggling with me.  All while twirling and speaking with a sing song in her voice.    The other thing about Aria that most people don't know, is she has quick wit.  Seriously, she is hilarious.  She says things that have us busting a gut and actually uses things in the right context.  The other day I was sitting on the couch with her.  I have a super sniffer.  Seth thinks I should become a professional sniffer for like perfumes or whatnot.  She was talking to me and I said, "Oh Aria you have dragon breath."  Without skipping a beat she breathes out like a dragon and practically rolls on the couch in a fit of laughter.   Her laughter is so contagious that all of us belly laughed right along with her.  

The two couldn't be more different from each other, yet they balance each other so beautifully.  With all that has been going on, I have noticed they are growing very close to each other.  After our first two children passed away, I had wondered if we would even be able to have one.  Instead we had two, and I am beyond grateful that they have each other.  As hard as some days are for me, where I wonder if I have the energy to press on and then I see their two precious little faces.   My family drives me to want to get better.  I keep on dreaming of the day when we can go out to a restaurant and then a long walk on the pier to gaze upon Lake Michigan in all it's glory.  Until then, it's games of Candy Land, Chutes and Ladders, Mariokart, and just plain hanging out.    I love to hear them laugh, it's truly music to my ears.



I have my wonderful husband Seth, who works so hard for us.  He is a CNC lathe machinist programmer.  He has learned his career by trade and is very good at his job.  I guess the best way I can explain what he does is if you have ever seen a wood lathe?  You take a piece of wood and the lathe whittles it down to the precise shape that you want.  He does the same thing, only with metal and whole lot more high tech.  He works for a very small shop, but loves what he does.  He has made everything from race car parts, nuclear reactor parts, to simple things like metal washers.  So lots of miscellaneous things.  We are thankful that G-d has provided him with a job in manufacturing in this economy.  So many jobs like his are going over to China or down to Mexico.  I only hope they can bring those jobs back, it's what he loves to do.  His dream would be to own his own shop and make things more custom made.  He has more creativity in his pinkie than I do in my whole body!  I call him MacGuyver, as if you would give him a couple of twist ties and a piece of gum, he'd be sure to create something useful.   If you can't tell, I think he is just the bee's knee's.   After our first daughter was diagnosed that she would not live, the first thing the doctor said was about 75% marriages fail after the death of a child.  If we weren't stunned enough to find out our child was going to die, we found out our marriage might not survive?  We went home that day and promised each other that no matter what, we'd make our marriage work.  Little did we know the trials that were ahead of us.   2 fires (our apartment and his work both burned down), 2 children died, 2 miscarriages, and now a chronic illness...   What is the secret?  Truly, it is G-d did something, we can't take the credit.  Our marriage is not perfect, we have had our days.  Truly, when you bury your children your life dramatically shifts, let alone being sick.  It is our hope in G-d that drives us to cling to Him and to each other.  Truly, there are days when I have questioned G-d.   If he loves me so much, why would He put me through all of this?  Am I being punished?  Am I being taught?  Is this just random repercussions to a fallen world?  I wish I could give you the answer that made sense of all of this.  I know the biblical answer is, for His Glory.  My suffering brings him Glory?  I do have to say, if my life had been perfect, I would have no need for him.  Throughout all of this, I have learned that I am desperate for Him.  While I can't tell you that it soothes my pain, I have seen His mighty hand working through others.  It is no coincidence that when I hit rock bottom, people will all of the sudden appear in ways I hadn't expected.  I just keep on clinging to the verse, ..."He is close to the broken hearted."   Some days I fall to the floor on my knees in tears asking where He is, while others I find myself jumping up and down thanking Him for His latest rescue.   He really does work in mysterious ways and always seems to be at the point of no return.   On the days, when I am too tired to believe, I have learned to ask others for help.  If I don't ask, how can they know?  On those days, I rely on their faith to help me through.   



Lately my food intake has dwindled and it is time for another round of botox.  For those of you who are just joining, I am not talking about the cosmetic uses.  They do an EGD and then inject it into my pylorus valve, which is below the stomach to allow the food to be able to empty out of my stomach more easily.  Whether it be stress or just the structure of my stomach, that valve likes to lock up and hold my stomach contents hostage.  It is very painful and nauseating.  It makes you feel like you have the stomach flu and then some.  Because of the decrease of calories and nutrition I am constantly deprived of energy and am always hungry.  My brain will beg for the food, but my stomach seems to say, no way Jose!  If they could just have a meeting of the minds!!   So we are going back to U of M on the 15th of January.  I am nervous as I have seemed to develop a bit of a phobia of hospitals.   My only alternatives are feeding tubes.  As I stated previously, my friend Stephanie right now is in the process of receiving her 2nd tube.   Having a feeding tube isn't as cut a dried as you would think.  I myself should have known better, as our oldest son Elijah had a mickey button.   I never thought twice about him having and NG tube or the mickey button, but I didn't really realize all of the risks that go along with it, it's just way different when it's you yourself.


The New Year has begun, and I can tell you, I am praying this is a year of miracles.  Not just for myself, but so many out there who are suffering as well.  I have been told to just stop hoping, to accept where I am at.  That's just not me, I can't give up hope.  If I don't have hope, than what do I have?  So for my New Year's resolution is to write more, laugh more, love more, and hopefully live more!


As always I am asking for prayers for healing, especially that this botox would help (and that I can stay of sound mind), that I can eat more, and be able to do the simple things with joy.   I guess I am asking for prayer for good health, mercy, wisdom, and peace.  I ask also that you would do so for my friend Stephanie.  I pray that she would experience G-d's mercy and know that He is truly with her as she has big decisions ahead of her.  

Watch, pray, believe, and be amazed.   
 (For you newcomer's this saying started back when Elijah was alive, a close friend of ours felt this to be our family motto)


PS  Janet Young, I have got to get your email lady!!  I have missed you.  Welcome back:)