Lessons from a 5.5 year old

Situations come and some of them are bad and some of them are good. We take them and we deal with the situations as they come. Sometimes the littlest of situations knock us down and other times the biggest situations we fly through with the easiest of ease.



Aden, who is 5.5 years old, is one of those that constantly amaze me. He is the most flexible amazing child I have ever seen. He was able to take the days that Zach was sick and be okay with it. He was able to go to multiple houses and have multiple ideas of what is going to happen. In this case, Aden has taught me a lot. It isn’t about the situation it is about the love and your ability to go through the situation.


From my 5.5 year old I have learned:


• There is nothing like a hug from your mom or your dad. Other people can hug but to have a hug that soothes your heart it has to be your mom or your dads.


• There is nothing like structure, or at least knowing that there is none. Aden needed to have structure, he needs to have structure but as long as we were honest with him, he was okay.  He is amazing flexible but he likes to know that he is taken care of even if that means that we don't know what it is


• There isn’t always an answer. As parents we want to have all the answers we want to be able to say this is why or this is what this is. However, we have learned that just always isn’t possible. There are situations that occur that have no earthly rhyme or reason.



• There is nothing that can fix a heart of a child. As adults our hearts function differently, we have to much heart knowledge and it gets in the way.  However, the brain knowledge gets in the way even more.  As adults it is hard to get over what we know and what we we have experienced to heal completely.  As a child you just do what you do, it is a child like Faith, you just know that it will be okay, you just know that things are okay. 

•The things that we don’t understand help a ton.  Getting to be with friends and getting to be the ones to talk and play.  Seeing him interact with a friend of his (we don’t see her often but he cares deeply for her) reminded me that having friends there even if they are clueless to the activity shows.  He didn't have to tell her about anything, she loved him for him, they were in their own 5 year old world. 

I will stand and admit that that I have no clue how my son is so AMAZING, he is a true gift from God.  He is able to be so much more than I ever could imagine and he is so strong. I am thankful that through all this I am able to see all the amazing little things that he is... Smart, Caring, Funny, Strong, Loving, AMAZING! 

Special Sunday

So It is Sunday and for those that know us, you know that we are at church.  Adam is teaching, Aden is in class and so am I. Not this week though... this week we decided to crash on some friends, who were having a family day.  We felt like this might be a chance for us to see them, which we so desperately wanted and for us to be loved on in a way that only this family can do. 

God reached down and touched me, I can't say that my brain knows anything different but I can say that my heart is amazed and the flame that I have been needing to see through this dark time was made brighter.  It is hard because I feel so different than everyone else, I feel like I am on the outside looking in unsure of how life is really supposed to be. 

So why is today Special Sunday because I was blessed enough to be with my family, to have what I need, to be loved and cherished.  I have been struggling with everything so to have things, reminders like to day is very special.  God is there and while I feel like I can't accomplish anything, I am reminded that God is there and that He is my Daddy (my HEAVENLY FATHER) and He cares deeply for me.  There is nothing that goes on that is out of His control.  Yes, I know considering it all I should know this, but sometimes we have to be reminded.

So So Saturday

So, what to say, what to type? Reality is that I don't have a clue on what to say I have come to the conculsion that some days are just a mix of Good and Hard and Bad and Wonderful. 

So here I sit thinking how to I share who I am to all these people when at this moment the thoughts are moving so rapidly in my head that I can't think.

So here it goes....

• My husband and I got to go on a date night last night and had a GREAT time, it was the 1st time in a long time that we were able to laugh and enjoy each other without the guilt of anything else. 
• This morning we went and we were able to bless my husband with getting a new car, this is something that we have been looking at for a long time and just now got things arranged so we could do it. This is an all God thing and I am delighted for my husband to get to have something just for him.
• Tomorrow we are going to get to be with friends and enjoy it all.

So my heart is feeling some what guilty... hard to enjoy things when my son is gone.
So my heart is feeling horrible for instances that are beyond my control
So my heart is feeling like it is missing the things that have been part of me for so long.
So my heart is feeling blessed to have a husband that will be embarassed for me and will stick by me no matter what.
So my heart is feeling thankful that each day ONLY has 24 hours, which means tomorrow will start new

FAITH FULL FRIDAY

When I started this back I wondered "what am I going to write about?" but truth be told I can ramble all day long if I were to sit here and just type.  Today's thought is FAITH FULL, yes I know that I wrote that differently than you expected but I did for a reason.  Lots of people have Faith when they are going through a hard situation, however, when the good times or the easy times are occurring they don't have faith.  So while I am walking through a darker time in my life I just can't imagine not having FAITH. I want to strive to have Faith all the time, in every situation.  For me I want and am striving to have Faith in Jesus and in God, not in the situation, in a person or anything else.

Faith, the word changes it meaning depending on your age and your situation.  To some it is simply will this chair hold me? Will I be able to see my friend tonight? For some the questions will be different.   Will I have enough money? Will I really have someone who will help me? Will I have to go through this alone?  Will this really work out? Going through the past 4 years I have learned to have faith is one thing, to really hold on to it and exercise it is another.  I can pull verse after verse after verse that will show you that God is here that He is faithful and that He knows what is doing but I want to take a sec and be even more honest than that.

I have to have FAITH that:

• I will wake up after attempting to sleep for a night and that I will have gotten enough sleep for that day to take care of the things that I need to take care of.  For those that don't know I am averaging 4 hours of sleep a night.  My brain decides that it doesn't want to turn off which has caused me to be up at hours that I would much much rather sleep.
• I will have people around me that will care about me
• I will get through this step by step.  Now this is one of those things that mean different things in different situations.  I am learning that sometimes step by step, sec by sec can be too much.  There are instances where that sec is overwhelming and seems like you can't breath much less do something.
• while the walls fall, they come crashing down.  That I will make it through and that I will in fact be stronger.  That I have to be more transparent, that being weak and having problems dealing with things is a normal occurrence.  Honestly we all have things that overwhelm us, right, so if that is the case I can do this.  I can be honest enough to say that I am having issues.

I have learned that God does amazing things and while the situations seem overwhelming and that there might not be a positive thing that can come out of it, that I am going to come through stronger.  There are several songs that are out now that have phrases, lines, in them that are encouraging to me.  That I can hold on and know that it will be okay. " You give me peace when the walls come crashing down" okay, check yep walls come crashing down.  "What if there is healing in my tears?" Yep, again check tears are there. "To infinity and beyond" okay so not a song but a cartoon character's line.  In this case I have heard this a million times.  Zach just had gotten into Buzz Lightyear, it was the 1st thing that he was in that was him, not anyone else's opinion.  He is with God forever, for infinity... To have the faith of a child.

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!