Saturday, November 21, 2009

Cursed Disease

I think the most brutal thing about this disease is looking into the expectant, "you-can-do-anything-Mommy" eyes of my baby boy and saying, "Not right now, honey. Mommy doesn't feel good." He's still just a little young to completely understand. I try to explain...

Jacob: Can you read to me while I eat Mommy? (As I'm giving my self my Symlin shot, changing my insulin pump)...

Me: Not right now buddy...Mommy has to take care of a few things. Mommy's not feeling so good today, so we have to take it easy today, okay?

Jacob: Why, Mommy?

Me: Well, you know how Mommy has to take lots of medicine, and vitamins? {Jacob nods} and how Mommy has a trach? {nodding again} Well, Mommy isn't like all the other Mommy's. I have something that's inside her that's always there... something that makes her not feel good sometimes.

Jacob: "But I need you to be good Mommy!"

Me: {can you hear the sound of my heart breaking?} Well, honey, I do too. But we have to wait until God decides it's time to make it go away.

Jacob: Can you read to me now?

The logical, rational side of me (yes, it's there...it may be small, but it's there!) thinks, okay, just read, move on, put the TV on, and he'll be fine.

The rest of me wants to rail at the heavens and shake my fists and stop my feet and have a tantrum and ask God why. It's like I have down times, but I can handle it. But to see my child, my baby, suffering, to know that I can't give him 100% of what I want to, 150% of what he wants...and I'm not talking materially. I'm just talking about being there....being able to roll around on the floor and run with him and not fall down or have my muscles give out or be in so much pain that I can barely move.

I want Jacob to be able to crawl on me like a jungle gym, and lay on my lap and not be in agony. Every time his little elbow digs into my leg it's like a horrible sharp penetrating pain that lasts for about 5 mintues even after I get him off me. And I hate that. I HATE that I have to push my child away physically because of pain. Sometimes, if it's not super-horrible, I just suck it up because I know it must be confusing to him. Yet there are times it's totally reflex, and I just grab his little arm to stop the agony.

I could go on and on about how unfair life is...(or wait, have I just done that??) It's just tough. I want to always convey hope and joy and be paitent. My soul is trying so hard. Every day I get up and tell God I can't do it without Him...and that's the only reason I've gotten to where I am now.

But the flesh...ah, how weak is the flesh. The flesh cries out. The flesh weeps.

The soul hopes. And as long as I have that....I will survive.

15 comments:

Jessica Nunemaker said...

Gives me new perspective. Stay strong!

popping in from SITS.

twistedtangerine said...

Thanks for stopping by (thin:dependence)!

Thanks for sharing.

I'm sure it's heartbreaking now and I can't imagine how that must feel, I won't even attempt to relate. But he will understand and he'll be able to look back and connect the pieces.

twistedtangerine said...
This comment has been removed by a blog administrator.
Pam said...

tears are rolling down my cheeks I can relate to what you are saying I do not have the same health issues you do however I have the same mother's heart...I so understand how you want to be there for your little one...I have and still do feel that way so often...then I need to remember what Amanda said today...mom, do not compare yourself to anyone else...you are who you are, you are able to do things others cannot...
Proverbs 3:5-6 is my life verse...I need to Trust in the Lord with all of my heart and lean not on my own understanding in all our ways acknowledge Him and He will direct our paths." we do not have to understand we just need to keep trusting in Him, keep on, keeping on...Jacob is a wonderful son and he will one day understand...remember that you are the mom that God chose for him.God will help you through every step, every struggle, life stinks at times...but God is Good and gives us the streangth we need. keep hanging in there...You are a blessing
I love you.

Karen & Gerard Zemek said...

Wow, that would be so hard! Hope it helped some to share your heart with us. Why? is the question God never promised to answer, but it's good you lean on Him. All we can do is the best we can so don't be hard on yourself, sounds like you are a very good mommy!

Be joyful in hope, patient in affliction, faithful in prayer. Rom. 12:12 (NIV)

Visiting from SITS.

Serendipity said...

This is a really thought provoking post. Thank you. Visiting from SITS, hope you are having a good weekend.

Debbie said...

My heart breaks for you too. What a terrible burden for you to bear.

The Redhead Riter said...

"I could go on and on about how unfair life is"

I always tell my daughter the same thing, but inside I feel like such a hypocrite because I totally agree with her and so we laugh about our miserableness together. I say...
Fair is where you get cotton candy.

:o(

Vent any time and feel sorry for yourself, but don't forget that in the end of everything, God will be there with all of us and the struggles will have been worth it.

Kerri said...

GOsh, Thank you all! It definitely helps to share my heart, and it REALLY helps to get encouragment from others....

ilovemy5kids said...

My heart breaks for you...What a light you are in the midst of so many people who are too selfish, including me!

I pray that God will give you a glimpse of His ultimate and loving eternal plan.

What a sweet msg of hope - you have already given to so many!

Blessings to you,
lana @ ilovemy5kids

JDaniel4's Mom said...

It would be so hard to struggle with the things you do. You seem to handle them with such dignity.

Katherine said...

UGH sometimes children have no idea how a little statement like that can cut right through you! It's hard now but someday he'll understand what a STRONG LOVING mother you are! Keep fighting the good fight!

CoconutPalmDesigns said...

Bless you and your family. I can't begin to imagine what you are going through.

Happy SITS Day!

- CoconutPalmDesigns

mariahsmile said...

sounds to me like you are one stong momma! don't worry, one day your baby will understand :)

Krista said...

Thank you, thank you, thank you! I can't say it enough, for voicing my frustrations, my fears, my guilt. I'm beginning to come to terms with my chronic illness, but not very well. I'm kicking and screaming the whole way. It's such a lonely, miserable feeling, but to connect gives me hope, not of a cure but comradre in all of this. I just starting blogging, i've been on FB forever, as well as all my IRL family and friends. I've joined twitter recently, but just started blogging. I need an escape without judgement or guilt. I haven't done much in the way of talking about it, as I'm still so and so's wife, the deacon's wife, the mom of 5, the treasurer of the soccer club. I've allowed stuff to fill my time, so I can ignore the comments, judgements as well as focus on what's important the 7 of us, making the most of each day, stop spreading my self so thin, that the ramifications last for months. Thank you for being a voice of chronic illness! I hope and pray I can learn a few things along the way!