LIVING

With EoE, Allergies, Asthma and a G-Tube

Asking questions

Standing at my post in the kitchen I found myself questioning things and asking God why.
I’m going to type this out just as the questions flowed through my mind.
Why did You chose me to live this life?
Why did You chose me to be their mom?
Why did You create this horrid disease?
Why do kids have to go through such things?
What about those poor kids I read about with Epidermolysis Bullosa?
People with cancer and other life threatening disease?
Did You create such things so others have jobs to find cures?
Was it to give others a purpose in life.
I do believe everything happens for a reason.
Did You create disease like these to teach lessons?
What am I suppose to be learning from all of this?
Why are the little ones who live their lives fighting chosen to do so?
Or are they little angels sent here to teach us?
Have I messed up somewhere along the way and you’re now showing me how to live by your word, the right way?
When do I get a break?
Why does it just keep rolling my way?
Why do I sometimes feel as if I’m in a movie and the whole world is watching, just waiting to see me crack?
Is our family going to be the one that helps the doctors break through to finding the cause and cure for Eosinophilic diseases?
How does everything tie together?
What is the plan for us? For me?
Where is this path taking us?
Am I suppose to do something great as an advocate for EoE?
I keep searching for my next step beyond my blog but haven’t seen what to do.
When will I know my next step?family_praying_hands Will I just continue as I am doing when my kids have kids?
Will I care for my grandchildren as I do my own because they will have this same disease?
Will they have it?
Will it be worse for them?
Please let there be a cure by then.
Or is this it?
You chose me for them because you knew I could do it?
You knew I wouldn’t give up?
I’ve not a selfish bone in my body. I would give anything for them.
Did you create me just to be here for them?
How does it all work?
Will I ever get to do the things I pictured myself doing?
Is it selfish of me to wonder such a thing?
I just want a pottery wheel and kiln.
Why?
Why does my family have to go through all of this and why can’t I just fix it?
Such a mean thing for all 3 of my kids to have to deal with their entire life.
Yes, Lord it could be much worse.
I do realize that, but, this is our life and what we deal with. It’s in our face everyday.
I know I shouldn’t complain but darn it I think I have a right.
We seem to have more downs that ups lately.
How about You give us a few good months this year.
We just need some uplifting. Well, I do anyways.
Of course You create kids to see the good until taught otherwise.
It just so happens you gave me great kids with big hearts and very positive spirits.
So maybe I should take from that and just keep going.
Continue to love them and stay positive.
Right back at where I started, with starting this blog.
To show others how when dealing with allergies, asthma, EoE and a feeding tube we keep on LIVING.

God, please continue guiding me and protecting my children.
Amen

Just my thoughts….

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January 28, 2013 - Posted by | LIVING

6 Comments »

  1. I am so happy to have found your blog! My 21 month old son has been diagnosed with allergies to milk, soy, eggs, peanuts, coconuts, and kiwi. We had to put in a G-tube this last September because he hadn’t gained weight since he was about a year old. He ended up refusing all food and they suspect eosinophilic esophagitis but we can’t confirm it. We have to have another endoscopy coming up here soon to check again. It sucks that we can’t do anything about all of this. I hate that I have a child who can’t eat, but wants to so bad. He simply does not understand that he can’t eat what we are eating. That’s what I hate the most. That he is too young to understand. We just have to put on happy faces and that’s what I strive to do every day. Because he is happy and I don’t want to change his innocent and happy outlook on life. Thanks for posting on your blog. I will be reading!

    Jennifer

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    Comment by Jennifer | January 29, 2013 | Reply

    • Jennifer it is so frustrating isn’t it!? My little Tinleigh is almost 16 months. She is to the point now that she wants to have what I’m eating. She also has a bad temper and gets quite angry about it. I am to the point that during the day I can’t let her seeing me eat. Just keep doing what you’re doing and smile. Definitely don’t let him see you down about it. Hang in there. You’re not alone!

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      Comment by livingtheallergylife | January 29, 2013 | Reply

  2. I’ve found myself asking some of those same questions.

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    Comment by Dianty | January 29, 2013 | Reply

  3. Thank you so much for being so vulnerable with your blog. It is one I think most of us “average super moms” relate with. Why me, why them, why us?
    My son was very sick from day one and in and out of hospitals for his entire first two years when he FINALLY was diagnosed with EE (EoE). He has been in food trials for 7 years and it doesn’t look like he will getting rid of his G-tube anytime soon.
    As I read your blog my heart aches inside. I FEEL your pain, the same nagging questions that we all secretly whisper to ourselves. What did I do to deserve “THIS” while my everyone else in my life seems to live peacefully? Am I being punished? I am I suppose to learn something? Is this a test of strength because if it is…You Win GOD, I quit, I admit– I AM WEAK!
    I also have a 5 year old son who started out the same way. Sick from day one, diagnosed with EE and EC. His levels didn’t get better when he went to elemental only diet. He continued to get sicker. It was horrible knowing that I brought another child into the world knowing he could be sick like his brother…but instead he was in a much worse state because his eosinophils where not responding to elemental formula. Then a few years ago he just got better– No meds, no eosinophils, eating anything he wants! No explanation for the specialist. He is a mystery. So, I question God, was it a miracle or a fluke? If it was a miracle why would God heal one of my sons and leave the other one sick? That seems cruel.
    In the middle of this I was diagnosed with a slow growing thyroid cancer that was already metastatic and has continued to be UNRESPONSIVE to treatment for 5 plus years now. SO, If there is a question to ask, I guarantee I already asked it, you can’t shock God now! Oh, I forgot to mention the interesting part. I have a degree in Theology (as in the study of the faith and concepts of God). Ironic isn’t it!
    I can’t help but ask the why’s. I have wrestled with my selfishness of wanting the life I once dreamed of. I have wrestled with misinformed people who have know idea what it is like to be the mom to chronically ill children. I have wrestled with God for answers.
    There is soooo much we will never have the answers to. But in reading your blog I read some of your beautiful questions that I have wrestled with myself and feel as if I have found true peace with. Just a few, but it’s a start at quieting my spirit. I wanted to share what I found in a humble hope this helps you out a little too. My intention is not to offend anyone but to share what has helped me.
    This gets long, really long, so hang with me 🙂

    You were talking with God in a beautifully honest way. Which to me says you believe on some level there is a Creator of all things, a higher being, someone “up there” in charge of all this down here. What I didn’t here you mention is the other side of the equation. There are two forces at work. Good and evil. Whether people practice religion or not I think most of us can admit there is good in the world , and there is evil in the world. A little devil on one shoulder and a little angle on the other! The bible talks about it too. The evil one, the fallen one, Lucifer, Satan they all refer to the same being.
    I have realized that most of the things I questioned God for bringing to me, creating in my life, or (let me be real honest) BLAMED God for wasn’t God at all. Life on earth is not what God created it to be. He created a perfect world with no sickness, no pain, no destruction. It was a beautiful garden where He could walk among us and talk with us. Sickness, like the one our precious innocent ones face, was NOT created by God. Sickness entered the earth when evil did. Therefore, try not to let your mind whisper those question with pain toward God for bringing this into our lives. When I feel disappointment with my life, with God, and I am full of questions that will probably never have answers, I go back to what I know to be TRUTH. This is what TRUTH says…

    Why did you choose this life for me?
    Jeremiah 29:11 For I know the plans I have for you says the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future.

    Why did you create this horrid disease?
    He didn’t . Genesis 3:16-19 God explains that as a result of Adam and Eves sin, sorrow, death, sickness and pain have entered the world.

    Did you create disease to teach us lessons?
    No! God did not create disease, he does not give us punishment to teach us lessons. He is full of mercy and kindness. God does make a promises to us though about bad things.
    In Genesis 50:20 & Romans 8:28 ,That what Satan intended for evil, God turned to good. Or that God will work all things for our good to those who love him.
    God doesn’t give us sickness but if we are sick or suffering He will work good out of it . In the process He may teach us a lesson or two but not give us sickness just because we need to learn something. Although it is tempting to feel that way, that is not the heart of God. Remember truth, God is a good, loving, merciful father.

    Why are the little ones who live their lives fighting chosen to do so.
    Remember God is not the creator of sickness. I don’t believe He chooses people for sickness. Satan, Lucifer, the evil one or in John 10:10 evil is referred to as the thief. NLT John 10:10 says, “The thief comes to steal, kill and destroy, but my (Jesus) purpose is to give them rich and satisfying life.” That is the heart of God— for our little ones to have a rich and satisfying life.

    Have I messed up somewhere?
    Remember God doesn’t punish us for sin or messing up. Jesus paid the penalty for us.
    John 9:2 “Rabbi (Jesus) who sinned, this man or his parents that this man be born blind?” John 9:3 “Neither this man nor his parents sinned, but this happened so that the work of God might be displayed in his life.”
    In this scripture we see the fulfillment of God’s promise that what was intended for evil, He would use for good.

    When do I get a break?
    John 16:33 “I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows, but take heart for I have overcome the world.”
    2Corinthians 4:16 “That is why we never give up. Though our bodies are dying, our inner strength in the Lord is growing everyday.”
    Matthew 11:28-29 “COME to me all you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you because I am humble and gentle in heart, and you will find rest for you souls.”

    Why do I Sometimes feel as if I’m in a movie and the whole world is watching waiting for me to crack?
    2Corinthians 4:8-10 “We are pressed on every side by troubles, but not crushed and broken. We are perplexed because we don’t understand why these things happen as they do, but we don’t give up and quit. We are hunted down but God never abandon us. We get knocked down, but we get up again and keep going. These bodies of ours are constantly facing death just as Jesus did; so it is clear to all that it is only the living Christ within who keeps us safe.
    Isaiah 40:31 “Those that hope in the Lord will renew their strength. They will soar on wings like eagles. They will run and not grow weary, they will walk and not be faint.”

    I don’t have even a quarter of the answers I wish I had about life. As a family and as Christians we have lived with chronic illness in our home for many years now and that is not always easy. At times I do feel judgement from others who have the fortune of good health. I have resigned myself not to place questions on God as if he is the creator of every bad thing. There is sickness, pain, sorrow, evil in the world but God is not the author of it. When I am feeling overwhelmed with the “whys”, the constant heartache in my life doesn’t seem fair and I start to blame God and that makes me doubt the goodness, I now STOP, RE-FRAME my thinking and go back to what I know is truth, not what my heart is telling me. The truth is that God a good, He says he is a merciful God, His plans are to prosper me and for me to have hope and a future. He promises to renew my strength. And when I think on those things… He does. 🙂

    Hang in there, Thanks for sharing and letting us all know that we are not alone in the questions we ask.

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    Comment by Kristen | February 3, 2013 | Reply

    • Wow Kristen. Thank you. Still taking what you wrote in but wanted to recognize the fact you took the time to reply on my blog.

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      Comment by livingtheallergylife | February 4, 2013 | Reply

  4. […] reread a few posts from last year this time. Wow, it was a crazy time for us. I have no idea how I got through it. I was struggling, and I still have my days. What mom doesn’t […]

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    Pingback by It’s been a year « LIVING | December 4, 2013 | Reply


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