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?