Monday, November 12, 2012

A Road Through Hell

Warning: This post is a combination of fear, sadness, pain, frustration, hopelessness, and did I mention fear and frustration?

A view through the dark night into our yellow lit kitchen looked upon two grown people, a husband and wife, with heads hung low, looking anywhere but at each other.  Stay distracted, it is easier.  A seemingly innocent conversation surrounding a family member with a chronic illness turned into a war which lead to defeat.  The truth is, when someone in a home does not feel well, and it is beyond just a winter cold or flu bug, life is no longer the same.  I hate, hate, hate, that it is me.  I am the one with a chronic illness.

I feel my protruding belly.  It is visible through my pajamas, just out of the corner of my eye, or bottom of my eye.  Years ago it would have been a happy sight.  A baby growing in my womb.  But now?  It is not.  I am not pregnant.  Though I look like I could be about 4 months along.  Something that even if I wanted to be, I could not be.

You see, I have not started menstrating.  I have not had a cycle in 3 years.  Almost exactly.  I found out I was pregnant with Calvin around December 15th, 2009.  Back in a life I could never exist in again.  One with a different set of instructions.  A different manual.  Oh how I tread above black currents that threaten my demise.

Something is wrong with me.  Seriously wrong.  This hormonal issue threatens the break me.  Not because I need another child.  But because it is yet another symptom of who-knows-what?

If knowing is half-the-battle, then I have surely lost.  And, when does one wave the white flag and just surrender?

Is it stress?

When I say (1) having Calvin and (2) working last year were stressful, no one can possibly understand what that truly was like inside of me.  (1) At the time of Cal's diagnosis I had a young and challenging Nolan.  Who pulled hair, did not nap, climbed into everything, and required the most energy anyone has directly demanded of me.  And I was pregnant.  I became pregnant without blinking.  Many-a-woman's dream.  But wow, was Calvin a surprise in more ways than one.  I can only chalk it up to : He was meant to be.  I believe that simply and strongly.

Then just go ahead and toss in there a major heart defect and Down syndrome.  I am numb.

Numb to exactly what this has really done to me.  Scared.  Numb.  Scared.  Numb.  Sure, there is a ton of joy and gratitude but it comes at a cost.  (Do not misunderstand this as ungrateful or regretful.  I would not trade Calvin and this experience for anything, including my health.)  This breaks my heart and makes me feel guilty.  I am wrong to feel this way.

Then I feel angry and defensive.  Defensive to the one who laughs and suggests I am over-reacting why my tire goes flat on the way to retrieve my 4.5 year old from pre-school and I have a 2 year old and a 2 month old in the back.  The 2 month old that will not eat.  Will not eat.  Will not eat.  Cannot breath.  Will not nurse.  Who presents a line-up of 'what ifs' into my life.  Needs to go the doctor, to the cardiologist.  Who has visits multiple times a week from this therapist or that: who can do nothing for him that I really truly need them to do.  Who needs me to pump.  To wake up in the middle of the night to pump and feed him but will not eat.  Who has Down syndrome.  Who aspirates.  Who needs optimal nutrition.  Who cannot have breastmilk.  What does this all mean????  You see devil, I am not settling for less, no matter what you do to me.  But oh God, I am helpless.  Helpless without You.

I am angry at those who do not see that I am suffering.  Who never have to endure this test.  Who get by and can point at me and call me weak.  How dare they.  Do they belong in my life?  Sure they do.  But just like the baby who will not eat, I can do nothing else.  How dare they put more on my plate.  Again, devil, you will not win with these thoughts.

I sit here, about 27 short but very very long months later and do not know anything about myself.  I do not know and I am frustrated because if I do not know, know one else does either.  If no one else does, then I am alone.  I am truly alone.

I want someone else to take my stomach for just one day, so I can feel normal again.  But it is all mine.  And here I am, back in that kitchen with a yellow haze threatening to suffacate my relationships as it snuffs me out.  No more oxygen.  Burnt out with only sulfur emissions to turn others away from me.  So they can breath.  I am toxic.  How can I reignite?  How can I let go of the torture of the past 30 months?  How will my own body heal when Calvin's has not?  How can I let go of his needs and let mine heal?  I cannot.  I truly do not know if I can.  When he suffers, I must.  Because I am his mom.  I will not leave him.  Is this what this is about?  No.  Not fully.  But maybe my body is trying so hard to suck away his problems.  If so, then I need a psychiatric ward, not a doctors clinic.

The devil visits.  Puts doubts in to my mind and fears in my heart.  I feel weak and helpless on my own.  I know we are God's; His to fight for us.

I have rambled.  I am not sure where this will go.  I know that I feel horrible right now.  My worst time of every day.  Night.  Morning will come and I will feel better.  Such is the cycle.  I am pained to know I am not the only one suffering with GI issues. I just do not know what I did to end up here.  I do not know where 'here' is.  I do not know how to get anywhere else.  This is my road through hell and it is a maze.  With many dead ends.  And I just want out.  I fear Calvin is in this maze with me.  My sweet and innocent baby.  He needs out as well.  And I must fight for him.  What if?  What if God has put me in this maze with Calvin so I can lead him out as I figure it out for myself?


  1. Kind of breaks my heart reading this...Just want you to know you are in my prayers.

  2. This broke my heart as well, I will pray for strength and healing physically & emotionally for you and sweet baby Calvin! Sending you BIG hugs!

  3. Sometimes it doesn't feel real enough to know we are loved by our Mighty Healer because of the all-too-real pain of the trials He allows us to endure. The Lord is working through you in so so so many ways and he has great plans for you. I pray for you. I have wondered myself at times if my prayers are enough, and it's easy to think, "I wish I could help you, but all I can do is pray." Prayer is powerful. Be bold in your prayers because our Lord supersedes nature and can do anything. I am asking God to take your sickness from you, once and for all, and to deliver you from your pain, your doubt, the bondage of illness that is holding you back from enjoying your life like you could. I am praying for you to feel that relief from the top of your head to the bottom of your feet, at this very moment. You have had enough. It's your turn to be done with being sick and it's time for you to heal. If you have more people praying for you, that petition will be heard. Where two or more are gathered in the Holy Spirit, He simply cannot ignore that. I know you have more than a few people praying and petitioning for you, and He will work in His own time, but He is not ignoring us.

    2 Corinthians 1:3-7 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.

    Jeremiah 29:11-14 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you,” declares the Lord, “and will bring you back from captivity. I will gather you from all the nations and places where I have banished you,” declares the Lord, “and will bring you back to the place from which I carried you into exile.”

    Philippians 4:5b-7 The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

    Matthew 21:21-22 Jesus replied, “Truly I tell you, if you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, ‘Go, throw yourself into the sea,’ and it will be done. If you believe, you will receive whatever you ask for in prayer.”

    Matthew 19-20 “Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven. For where two or three gather in my name, there am I with them.”

  4. I am praying for you too. It breaks my heart as well to hear your struggles but that last comment was filled with so much stength in scripture. Hold Him close as you struggle because only He can heal so deep and get you to a place of peace. He will lift you up and carry you through these times. Love to you...

  5. Ilisa, my heart is cryig for you and sweet Calvin as I read this. I can only imagine what you are going through. Please know that I am praying for you.

  6. You are often on my heart, and I wanted to let you know that I am praying for you today. Lately I have been clinging to 2 Corinthians 4:16-18, and I wanted to share it with you.

    "So we do not lose heart. Though our outer nature is wasting away, our inner nature is being renewed day by day. For this slight, momentary affliction is preparing for us an eternal weight of glory beyond comprehension as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."

    ‎"Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.” Matthew 11:28-30

    I am praying for you, that you will not lose heart. Come to Jesus, and He will give you rest for your soul even in this difficult season. He has borne your griefs and carried your sorrows. And he is using these slight, momentary afflictions (though, I know, they feel neither slight nor momentary) to prepare for you an eternal weight of glory.

  7. This is my first time i visit here and I found so many interesting stuff in your blog especially it's discussion. thank you.
    frases de tristeza y dolor