Thoughtful Thursday

One of the biggest things that I learned is that each and every person sees things and they have different thoughts, different beliefs, and different reactions.  One of things that I hope to do by starting this blog again is that I will ramble enough to let God be seen through me, not the religious answer that everyone wants to be seen but the raw real emotional side of having things happen that are beyond our control. 


If we are honest with ourselves we each have things that go wrong... we get up late, we spill our coffee, we are out of coffee, we get stuck at every red light, we yell at our love ones, we eat the wrong thing, we get a piece of bad news, we have to pay a bill that we don't have money for, we don't get to see the one that we want to, we don't get the hug that we need... do I really need to go on? Why do we think that we have to act like things are okay, that they are alright?


I am learning this.... things aren't perfect, we aren't promised that it would be easy or even make sense.  This is what I am learning, I can't explain to people what I am going through, the words just aren't there, I don't want the emotions to be transparent for everyone to see.  However, I am learning that it is okay.  It is okay to not be okay.  It is okay to be hurt.  It is okay to not make sense. It is okay to be MAD it is okay to be pissed at the world (yes I know that isn't the perfect language but sometimes we need to be reminded it is okay to be mad, frustrated and upset)


In a dark room, there is only a need for one little light.  It takes one spark one glisten of light to make the difference in a dark room.  In today's world, I know in my own life, I can look and say that the world is dark if I let it be dark.  My son was sick, My son died, I lost friends, I lost my identity, I lost my ability to know what I can and can't do.  However, one light, one friend makes a difference.  I am learning that today isn't going to be a failure, even if things go wrong or not the way that I wanted them to, it doesn't mean that it is a fail.  I mean learning that sometimes those lights dim but it doesn't mean that we don't have lights in our life I am striving to be that light that others see.  To use all the things that the world has thrown at us and be thankful that I have what I have.  I am being reminded daily, sometimes multiple times a day, that I can have peace when the walls come crashing down, in my life the walls are done.  I am trying to rebuild the walls without people seeing them down but the walls are crashing down the walls are down.  I am being reminded that there is healing in the tears, it is okay to cry, to hurt, to be broken.  Gosh to be broken is hard, to be broken before other people, in front of the world is even harder.


Some days what I say will ramble like today, I don't know what the point of it is! Except maybe to remind me that I am not alone in this and although I am struggling to make one foot be in front of the others, that I am here surrounded by people that care.  That I matter, that I can do this!  You know what you do too, you matter and you can do whatever it is that is going on.

A New start...

It has been a really long time since I have updated this blog, mostly because life has been a tad crazy. 

So I thought that I would reintroduce myself and let everyone know who I am and why I have this blog...

---Who am I?

• My name is Jennifer, I have been married since 2004 to a wonderful man.  He is the love of my life and I am amazed when we are going through the journeys that we are going through.
• I have been blessed with two sons, Aden who was born Oct 1,2005 and who is amazing caring and who keeps me on my toes.  We also have another son who was born July 2, 2007, he is amazing and smiles and has touched more people than I can imagine.  Zachary was born with a genetic disease, Mitochondrial disease.  Zachary fought hard but was blessed enough to go be with Jesus June 14,2011.  He was almost 4 years old.
• My family and I are involved in our church and we love to be involved with our friends.

---Why am I writing?

• yeah I wish I knew this but I know that I would love to start writing things and sharing the things that I have learned and been blessed with. 
• There are trials and there are blessings and I hope that I can share and touch someone.

There will be more but I just want to reintroduce myself

ALL ABOARD FOR A CURE!!!!

Imagine if your body didn’t have the energy to:

· Properly digest foods	· Run
· Stay warm or cool	· Play
· Maintain muscle control	· Laugh
· Walk

Now imagine if you were a child. Zachary is my 2.5 year old and he struggles with some items on the list above because he suffers from a disease called Mitochondrial Disease. Mitochondrial Disease has robbed his body of the ability to produce enough energy to do these tasks, as well as other tasks that he desires to do on a daily basis. Mitochondrial Disease is a disease that hinders the body’s ability to produce energy, is cyclical and its symptoms vary widely

Zachary has a determined spirit and because of the medical interventions that have been developed he is able to have some good days where he can walk and play with his older brother. However, mitochondrial disease has caused his body to decide what is more important, to breathe or laugh. Some days we know that he is going to sleep 20 hours a day and other days we know that he is going to be able to do the things that other children do.

Some of the things that Zachary deals with on a daily basis are: a feeding tube that goes directly into his intestines, a feeding pump that feeds him specialized formula all day, another specialized formula that he drinks, TPN (nutrition that goes into his veins directly), multiple medications (anywhere from 4-8 meds multiple times a day), braces on his ankles/feet, a wheelchair, a walker, multiple doctor’s appointments and multiple therapies. Zachary is 2.5 years old and even with the feeding pump and the specialized formulas he only weighs 19 pounds and is 31 inches tall. This provides us with problems finding clothes that fit but even more it means that car seats, highchairs, cribs, etc can also be difficult for us to handle. We never know if he is going to be in the hospital or he is going to be fine. In 2009, Zachary was in the hospital 60 days; he also had a number of procedures and surgeries. So far in 2010, Zachary has been in the hospital 13 days.

Mitochondrial disease has no cure and no treatment; there are only band-aids or temporary fixes. On April 24, 2010 the Third Annual “All Aboard For a Cure” walk will be held to raise funds for research, and education, of this debilitating and possibly fatal disease. I come to you asking for sponsorship of Team Zachary. By your financial sponsorship of Team Zachary you will have a hand in changing Zach’s life, as well as the lives of so many children and adults who suffer from this disease. All proceeds from this sponsorship go directly to the United Mitochondrial Disease Foundation whose goal is to fund research as well as provide education to affected individuals and families. Thank you for your thoughts and support in such a vital fundraising effort. You may fill out the sponsorship packet and return it back to me, or you can go online to www.allaboardforacure.com, TEAM ZACHARY.

Please email me if you have any questions or if I can help you in anyway!

a Mini update

Sorry that it has been forever things have been kinda crazy, We spent from Dec 27th to Jan 5th in the hospital with Zach. He is doing better though and although he is having hard days he is doing wonderful and I am amazed at what all he is doing.

My Wonderful Cousin is putting on the "2010 Miss Georgia CBA Benefit Pageant" It is going to be put on for Zachary and for some of the things that he needs. She is going to try to raise enough money for us to purchase the SleepSafe HiLo bed for Zachary. Insurance won't cover it because he is technically able to still use the crib. However, with this bed, he will be able to have the head elevated to the position that he needs for his reflux without using extra pillows and since it is still enclosed it will allow us not worry as much about him jumping out and pulling out his button. He will be able to use it for years as well, he will be able to grow into it.

The 2010 Miss Georgia CBA Benefit Pageant will be held on March 20th, from 10am-4pm. If you are interested in entering it, then you can contact her, I am going to post the link to the facebook page and you can contact her from that. She is also going to be selling the tickets to attend, I think that they are 5 or 10 dollars a piece. We also realize that not every family has girls that want to participate so they also have a list of things that we need if you are interested in donating that way.

Please pray for this....It would be a huge blessing to get this bed for Zach but it also is sharing the face of MITO. Please go look at her event page for it!

http://www.facebook.com/reqs.php#/event.php?eid=295319760427

Dec Already

So it is December 2nd already... I can't believe how fast time is flying. I also can't believe the number of phone calls and emails and shout-outs that are asking for ideas for the boys. There are people that asking for small ideas, money ideas, and gift ideas so I am going to post here and on caringbridge. I don't know who reads what but I don't want to send a mass email out because we aren't looking for anything in particular, this is one of those posts that if you were asking it is for you.

Ideas for Aden:
-DVDs- he loves backyardgins, superheros, scooby, etc. We haven't bought new DVDs in a while so he doesn't have many new releases.
-sports
-cars
-legos
-Days out (Monkey Joes, ChuckeCheese, etc)
-twin bedding
Please NO spongebob though

Ideas for Zach:
-Stickers- he loves loves loves loves stickers. This is prob his number one thing that he does
-paper
-Art stuff
-color wonder things
-sleepers (18 months to 2T), preferable those that have buttons or snap at the legs, so we can get the tube in and out.
-pillow cases and crib sheets

Money Ideas (just for those that asked)
-Aden's school tuition
-cleaning services

Time Ideas
-Taking Aden to the playground (Zach can't go)
-Taking Aden to the movies (again Zach can't go)
-Watching Zach so we can do things with Aden
-Preparing meals or gift cards so we can not worry about dinner and have that time together.

Household things:
-a new vacuum (one that has a heppa filter in it)
-storage or something to organize the toy room
-Storage container or file folder things for Zach's artwork

I am sure there are million of other ideas but this is what I came up with, I will update it as the month goes on.

Thankful for Family

So I had an appt today and it made me stop and realize that I am very blessed to have a great network of family and friends to help me/us with Zach. People that do care about Zach and Aden and have helped us beyond what I could ever thank them for. I am so delighted to know that I am not on this journey alone and that no matter what happens we have AWESOME people here with us.

1st, I need to say that I have AWESOME in laws, today you hear so many bad stories about in laws but truthfully I am blessed with the best in laws ever. I am proud to call them mom and dad. I love them both so much and they have walked the world for us and cont to do so. They love the boys so much and have been a huge help with both of them.... Aden loves being over there. I could never say say how much they have done for us. They are wonderful. They kept the boys for me so I could go out on Black Friday.

2nd, we have awesome Church family.... they have stepped up so much helping me with Aden, helping with cleaning supplies and with stickers. The have helped with smiles and hugs and with the prayers. I am so sure that there are things that I have missed but I am so honored to have them as part of my Christian Family.

Sigh

well, things aren't easy.
WOW where to start, 1st I am so sorry that I haven't updated this often, I have been doing the caringbridge cause it has been a little easier but I wanted to write here and add some prayer request on the bottom of this post/update.

So we have been in and out of the hospital lately... we were in the hospital for 13 days out at home for 8 and now have been in patient for 10 days. This trip has been hard and we don't know what all is going. This might all be part of his MITO and it might be things that we have to learn how to handle and move on.

One of the hardest things about this is being separated.... I miss my husband, I miss my son, I miss tucking him in at night and having dinner with them. I keep telling myself that this is just for a season.

I used to think that offering to help was enough but I am slowly realizing, actually I really know that sometimes you just have to step up and do something. Something that is on my mind, It was overheard tonight that "Adam and Jen have so many people that want to do things but they aren't willing to tell them what to do" Oh my, Can I vent on this for a moment? Have you thought about what we are going through and what is happening.. our family has been ripped apart, half at home and half at the hospital. We have always been together for meals and for bed times and now it doesn't happen that way. We don't know talents or abilities or what you might be willing to actually do. This frustrates me... if you know of something, or what to do something, please just do it. I have been so wrapped up in Zach's care that I forgot to eat today, if I forget to eat what makes you think that I know what to tell you to do for us. Please Please please just do whatever your heart leads, whatever God wants you to do.