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Wednesday, October 15, 2008

quality of life

I'm not sure whether I should write this chronologically, because that's not how anything occurs to you at 3:41 am.

But if I did I'd start by writing that I was talking to a friend two nights ago and telling him the gist (that's all Jen will share) of Zoe's former pediatrician's enthused words to Jen. That Jen's quality of life and the other 7 kids' quality of life and my quality of life and Zoe's quality of life all suffer as we try our hardest to extend Zoe's life.

And my friend told me that he's pretty sure that's what everyone thinks.

It stuck in my craw a little and made me want to fight my way out of that corner. So I did and told him that I doubt anyone can willfully let a plant die in their house, let alone a puppy, let alone a baby who smiles and coos and sometimes talks to her hands. And no one has given us an expiration date of our daughter. No one knows if its tomorrow, 3 years, 3 months, or 3 minutes.

But the response has stuck with me like the perfect counterpunch in a fight, especially now. It stings. Maybe everyone thinks that.

Right now, at 3:41, I am less full of fight and more full of questions and tears and doubt. Did I do this all wrong? What if everyone is thinking how I did this wrong. And your thoughts are of pity and camaraderie, but rarely empathy.

Would you have had an eighth kid? Probably not, even if you felt like God was telling you to. And would you have taken the signs I did to mean God was telling you anything? What if Zoe was more a manifestation of my will instead of God's?

Quality of life. Zoe's last seven nights have been horrid. She cries and wails and we don't know what to do. We'd ask our pediatrician but - yeah. Yeah our pediatrician may or may not give us the advice Zoe needs. Depends who you ask.

Jen's convinced the last nights have been because Zoe's heart is getting worse and we need to make a decision. She says we need to talk more about that.

Which would mean talking. Which we do, off and on, but mostly about heart surgery and bills. But maybe Dr. So and So was right. Quality of life of the marriage? Of Jen, or me, who are sleepless beyond anything we can express? Can we really keep doing this for another six months? A year or two? At 3:41 - now 3:50 - I don't know.

We ran out of water. And Zoe can't have tap water so it's 2 something and I have to get to Walmart. And all of these questions - my friend's comments - Dr. So and So's quality of life argument - it's a flurry of blows to the head, to the body. It's resonating now that I feel angrily unprepared to feed my daughter, let alone rule on her health. I don't know.

I'm working 12 and 15 and sometimes more hours at work through an incredibly demanding season. Hoping they'll accept whatever I give them with whatever sleep I'm given. Not exactly the quality of life my work's expecting.

Quality of life, when you factor in the current bills and a heart surgery and school tuitions and gasoline and feeding the tribe. Last night I laid into Izzi and Kellen about doing their chores and told them so what if you don't want to do them? In the real world, no one gives a - care. No one cares if you don't want to do something. That's not life.

Or maybe it's not mine. Maybe you're looking in and reading this and still kinda shaking your head about our nonsensical position - fight for extra days with someone who may or may not have extra days. Is this brave?

3:59. I still don't have answers. But my alarm will go off in two hours, and it doesn't give a - care. No one cares if you don't want to do something. That's not life.

17 comments:

  1. Anonymous7:59 AM

    I have been following your blog for a while. I pray for your little Zoe also. As a mom of 3 young sons I would do anything I could to keep them here on earth with me and my husband. I agree that you can't just sit and do nothing and I can't imagine any parent would do so. You are doing the right thing for your precious daugher. God will determine when her time here on earth is up. None of us knows when that will be for us or our loved ones. I will continue to keep your family in my prayers.
    Katie in Maine

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  2. Anonymous8:28 AM

    That's why god gives children parents. Parents are the true advocates for their children. How would you stop trying? You're with Zoe daily and see her alive and participating in life. Maybe being objective isn't what you're supposed to do.

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  3. I don't have one single answer to one single question that bombards you in these wee hours of the morning. I do know that God has never left the throne and He gave Zoe to you for a reason, if for no other reason than to stand alone and fight for her. You do not stand alone in your fight and have many praying for you. I won't argue quality of life with anyone other than to say that if God gives it, it has GREAT VALUE. Only He knows the value of Zoe's life completely, but He has trusted her to you and Jen and He WILL see you through. I am praying for Him to touch Zoe's heart with healing, and for His sweet rest for you guys. Asking Him to give you new strength for today, knowing He will give you what you need tomorrow when tomorrow comes. I am trusting Him with you. I care.

    Laurie in Ca.

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  4. I care..not because of pity..but because I marvel at your strength. I marvel at Jen's strength. I marvel at Zoe's strength. Do not despair. You have a WHOLE army of people praying and supporting you because you DARE to go against what some consider the 'norm.'. God bless you and your strong, sweet, family!

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  5. Anonymous10:32 AM

    it's an impossible situation. you don't want to second-guess your decisions; you don't want to question "was it my will or God's will?" you don't want to -- but you do. i still second-guess our decision to remove tennyson from the machines that were keeping him alive - was that my will, or God's will? what makes it impossible is the not knowing and living with the fact that you may never know. i believe in this life we can only look backward to see God's hand, we can't know it in the present, not really. and we can't expect it for the future. we can only Hope - and often our hope is meager and short-sighted and selfish. we can be comforted that someday "hope will not disappoint" and we will know the reasons why we walked the path that we walked.

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  6. Greg, I define courage as doing the right thing, whether it makes sense or not, even if it terrifies us. So yes, you are courageous, you are brave. God breathed life into his creation. We were designed for life. Everything in us fights off death, fighting to take one more breath, willing our hearts to beat one more time. I've watched people who have gracefully accepted the imminency of their own death still fighting to live. So yes, you better believe you are going to fight for your baby girl to live one more day, one more hour. In God's great tender love, in his infinite wisdom, he delibertly chose you to be the parents to entrust Zoe to, the ones to fight for her and be her advocates, the ones he trusts to help her breathe every breath he has chosen for her to have. We also are crazy enough to have the blessing of 8 children because we chose to walk in obedience to what God asked us to do. Several of those children have had some serious medical conditions. We have heard from many well meaning and many not so well meaning doctors, friends, family, strangers who have criticized us or applauded us for the choices we have had to make for our children, often adding much grief to our difficulties. We have had to learn (& continue to learn) to focus on what God is asking us to do for each situation and move forward confidently in His direction, (Okay, so not always so confidently but maybe resolutely). I bring you boldly before God's throne today asking him to continue filling you with His wisdom and the knowledge of His will concerning Zoe and your whole family. You are cared about and Zoe's life is speaking boldly and clearly as a testimony to God. I also pray for rest along the way for all of you.

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  7. Just remember God has not given you the graces for tomorrow but only today. That has truly gotten me to this point 3 1/2 years. The thought of doing this for however long scares me. But then I look at that precious smile and those innocent eyes and it energizes my heart. Yes, people think we are crazy, but sometimes we just think they are so unlucky not to be us, not to experience this perfect love. Praying that Zoe will get what is needed, if heart or whatever. The first year is the hardest and it really does get better. That doesn't mean their won't be hard times for them but they get stronger with more days.

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  8. I think what you are doing is absloutly right!! Is it easy, no. It is ideal, def. not! But it is what you have been handed by the Lord. He does not make mistakes and He creates all children himself. In a world that is selfish beyond belief it is easy for people to think "what about you" but as a mother, I know that I would do anything in my power to take care of my children and I see you and Jen doing the same. I pray for your family all the time. I hope God gives you the peace in your heart to know ya'll are being the very best for precious Zoe!!
    Blessing!
    Jenn

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  9. Anonymous4:25 PM

    Beyond a shadow of a doubt you aren't alone, and I truly believe that any pro-life person, or any parent couldn't sit back and suggest that your quality of life is suffering. This IS your life...Zoe's obviously a gift to you. To see it otherwise is to deny God's providence. Would you send back a sassy 10yo because they were infringing on your "quality of life"? How about the sleepless nights wondering when you're going to hear the garage door open cause your teen is finally home from work....Oh, the insinuation that there'd be something better out there for you without Zoe just makes me MAD! If it were not people challenging the perfection of your life, it'd be (or is!) bills, work stress, marriage trials, etc. So just do away with those - okay - cause they're infringing on your/your families quality of life.
    Whew - thanks for letting me get that off my chest! ZOE IS amazing - she's right on target for her age in many ways...and equally a gift as her peers. If you need someone to come in nights so you can get some sleep, might you be able to ask for that - and let those of us who are local and able, do that so you can rest and be restored once in a while? Even the toughest parents need a hand - with a fully healthy child! Our prayers continue to pour upon your family. He loves you - the body of Christ loves you. He WILL make a way!

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  10. Anonymous9:57 PM

    You have made the hard choice, you have made the sacrificial choice, you have made the choice to answer the call to care for Zoe with God's direction. You are in the prayers of so many. I feel blessed to read along your journey and will pray for you, Zoe, Jen and your family.

    God's Blessings

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  11. Anonymous10:42 PM

    As far as quality of life goes for your children, I just wanted to post what a mom of ten children--the last of whom had trisomy 13 wrote:
    "During her 80 days, our little Annie taught us our greatest lessons in life. Through her life, we experience the deepest sorrow and the most intense love. She taught us the true meaning and purpose of life and we are forever changed as a family. Our children have learned that if they are ever in need, their family will love them, protect them and do anything to support them just like we did for Annie. They developed an incredible empathy for the disabled and the vulnerable.

    The ultimate irony is that this little girl who seemed so broken, flawed and seemingly without purpose or value, was in fact, perfect after all."

    Greg and Jen, I believe this to be true of you as well. The lessons your children/family is learning from all this is a quality of life that frankly is needed as a witness to this all too often self absorbed world. Heck, wasn't it peoples "quality of life" or rather what they wanted their quality of life to be and greed that got us into some of this financial mess this nation is in. Yes, the more children you have, quality of life changes, but is it worse or better and who's to judge that. I think it just forces you to be selfless. Most important is that children are loved deeply, and grow up to be loving, compassionate human beings and witnesses to a Greater Love. Your family is learning this through the sacrifices, struggles, and imperfections. Life isn't perfect.
    Every parent wants to know they are doing right for their children--it's what we do, and why God entrusted us with the task-a huge responsibility that I find can only be accomplished lived with Him. We cling to Him to help us, and make us better when we fail miserably knowing He will guide us. And yes sometimes we are tested in fire only to come through it changed and better for it.
    The strength of a Christian home will always be under attack so don't let someone's silly comments divide what God has built :)

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  12. Greg & Jen-

    I know that you have had several comments saying exactly what I feel... There is NO ONE qualified to make an assessment on Zoe's quality of life, or yours or your other children's, except our living God. He has without doubt given her precious life and breath, and He has continued to sustain you both, day in and day out. I can't imagine the energy, time, sleepless nights that you have poured into her precious life, but as a mother, as a parent, who wouldn't do that? God is the ONLY one in charge of life and what it is worth and as Laurie said, He obviously feels it is INCREDIBLY worthy. Just as He felt our Maddox's life was too, although we only had him in this world for an instant. I will pray for your peace, your strength for today and your heart's preparation and peace for tomorrow. I am SO PROUD of you both and at Zoe's strength.

    So much love and prayer,
    Kenzie

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  13. Anonymous1:13 PM

    You are doing the right thing by trying anything and everything you can for Zoe. That is my opinion... and it looks like the opinion of many other, too!

    God bless you always.

    Jen, Jeremy & Jacob Schultz
    www.caringbridge.org/visit/jacobjeremyschultz

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  14. Quality of life. A term invented by people who want to kill those who don't measure up.

    For the sake of argument, let's say for a minute that your quality of life actually IS "less" than it was before. If it is, SO WHAT? We are made in the image of God. We are most like Him when we sacrifice our own quality of life to GIVE to the neighbor who needs our love and our gifts and our service. Those who don't believe in Him cannot understand this. So they'll tell you to look out for yourself and your own quality of life.

    We should fear and love God so that we do not hurt nor harm our neighbor in his body, but help and support him in every physical need.

    -- Susan, a friend of Deidre

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  15. Anonymous9:48 AM

    Dear Greg and Jen,

    I love your video. It says it all; life and love. How can we judge? Who are we to judge? When we were expecting our daughter Annie, who had trisomy 13 (similar prognosis) we went through the same thoughts as you. We knew that caring for her would be a handful and there was a responsibility to our other children and their needs. But after coming to know the stories of so many other families we could see that there was a beautiful and important quality of life to these lives.
    We decided to provide treatment for Annie as if there were no disability issues.
    Unfortunately, Annie's life ended tragically because the public health care system did not allow us to make the decisions that you have the right to make and treatment was covertly withheld.
    I am now battling for the right for others to choose.
    God bless you all.
    Barb
    www.anniefarlow.com

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  16. May God fill you with His peace. Our ways are not His ways...our thoughts are not His thouhgts... He loves us and promises to never leave us.

    Zoe is in our prayers each and every day. Not because of pity...but because we are brothers and sisters in Christ. Zoe is a miracle, a gift from God. Not everyone will be able to see that or understand it. Zoe has changed many lives forever...God is at work through her and through her amazing parents, family and friends.

    Michelle

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  17. Anonymous1:42 PM

    Just found your blog and I will be praying for you and your family today. As these questions swirl around in your mind and you are preparing yourself for whatever is ahead, may I just thank you for valuing the life of your child!
    Trinity

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