Steroid week is over and Maggie's behavior was quite good considering our past adventures with this drug. However, Maggie's diarrhea has continued to worsen. I do feel like all we ever talk about is poop, but really that is our life. That is all we talk about here in this house because that's all we do all day long-- clean up poop.
Anyways, yes, the diarrhea is outrageous right now. Actually, it just hasn't let up in the last month plus. Maggie's labs showed on Thursday that her potassium was down to 2.8. If she wasn't on TPN, we'd have been in the clinic getting a bolus of potassium, but instead they just changed the contents in her TPN bag to add more. I worry that it isn't enough though as Maggie has laid on me some tonight, which is what she has done in the past when it is low. But I guess we just have to wait and see what happens and assume that the TPN is going to take care of it (which I don't have high hopes.)
My attitude (or rather both of ours) has become quite bitter. I can only speak for myself, but I am ticked. I am mad that the TPN is supposed to be our "saving grace" and it hasn't done squat. Most of our day consists of Maggie telling us that she has to "poo." I lay her down to change her and there's nothing there. 8 out of 10 times we have false alarms, which makes me think that she is feeling stomach cramps, but you know it's coming because her belly sounds like a washing machine sloshing liquid around and making rumbling sounds. So, the times that we decide that it is a false alarm ends up proving us wrong and then we are cleaning diarrhea all over the place. Maggie had complete liquid diarrhea today in her high chair, so in the process of cleaning that up and getting Maggie a booster chair, she then had diarrhea in the booster chair. Our day consists of cleaning up diarrhea. It doesn't even phase us anymore, but I think each time it happens, our short fuse becomes even shorter.
Not to mention that nights are horrible as normally this is when the diarrhea increases, though I don't know how chronic diarrhea all day long can increase further. I will just get Maggie to sleep (and yes, I still walk her around) and as I lay her down, she poops. Then all of my efforts are wasted. Last night we went through 5 waterproof pads because our changing pad has been overworked. It cannot handle complete liquid as it just runs right down the sides. And those super absorbent diapers, not so absorbent as they advertise. I guess the diapers cannot deal with the sheer quantity and velocity of liquid streaming out her bottom. I also sleep with one ear listening for the shooting stream of liquid coming out so as to get it before it soaks the pad. I have found myself to not be as successful due to our failure in materials to do their jobs.
So, it feels as though all things are failing us, diapers, doctors, TPN, and even God. I have lost faith in God. I've been praying for 16 months, actually my whole life for my child, but especially these last 16 months and for this specific problem of diarrhea for 9 months, and I feel as though God doesn't care. He isn't doing a darn thing to help Maggie. Faith is easy when things are going good for you, but when you've been stuck in your own hell for as long as we have, it's literally impossible. Sure, I believe in God, but I am beginning to think that He doesn't care. Why else would He be putting us through this misery? To teach us something... I've learned a lot, but you know what, don't use my child as a lesson. To punish us for something of the past, our ancestors... I'll repent. I'm so sick and tired of screaming my prayers to God for healing of Maggie and not having any reprieve.
We are suffering. Our relationship with each other is on edge with each poop experience, our psyche is on the brink of hysteria, we are losing it. Sure, cancer is tough, but this diarrhea is killing us. We cannot deal with much more.
I don't know what to say. Please pray? But then again, that's what we've been doing and the diarrhea has only gotten worse. We have lost all hope, faith, and sanity.
19 comments:
Hey Andy and Whitney,
I can't believe it. Everytime I read the blog, I'm just hoping for a miracle. I know you are raw with emotion and exsaution. Please call me twm (Sunday) I will come over and give you both a break. Even if you only feel comfortable enough walking around the block, or going to dinner. I will be there. Still praying...call me!
Jess
My dear friends,
I always struggle with what to say. How can my simple words be a source of encouragement when you are going through such a storm? I wish I knew the answers to your valid 'why' questions. You are right...it is easy to have faith when things are going well. But when trials (even that word seems like an understatement) arise, I think it is natural for us to question why. Even Christ on the cross, who is God, questioned why His Father had forsaken Him. His human body felt that anguish, even though He knew this was part of God's plan (John 12:27-28).
As I stated earlier, nothing I can say can probably ease what you are going through. Just know I love you and God does too, even when His ways just don't make sense to us. Call me whenever you need to. My sister's wedding was so lovely. Now that it is over, my shcedule should be much more open. Love you guys!
Whit and Andy-
Thanks for your honesty tonight. I really don't know how you're making it through this. I think you two are amazing parents. I will continue to pray for you three--lifting your arms up in this discouraging time. I'm believing that some day you'll be able to look back in this and see where God was in al this. I understand that you feel abandoned. Keep on keeping on guys-each day you walk through this you're one day closer to the end.
Love to all three if you!
There are no words to provide relief or comfort for any of you at this time. Please know that there are many of us out here caring deeply about all three of you and your well being.
I wish I lived closer so I could at least offer some relief if only briefly. For now I will continue to pray...
Strength and Love to all of you!
deborah
I just want you to know that Melanie and I love you and are here for you in mind and spirit. I have said before that I have no idea why this is happening and you are being put through such trials. There is nothing that can really comfort you at this time without a reprieve. I only hope that the "other side" of this is so great as to restore your faith. I find myself asking why you have to go through this and are trapped fighting one thing after another instead of just being able to be parents to a little girl. We are constantly thinking of you and wish we could do more to bring you comfort. If there is ever anything we can do I hope you will let us know. We love you.
Sam, Melanie, and Robert
I do know how you feel...believe me. Nothing causes you to question faith like the suffering and death of your child. It is beyond excruciating. I have felt exactly as you do many, many times. But...and there is a but...the way I get through it, is knowing that I am not the first, nor the only person to suffer so. I often am drawn to the suffering of the people who died and/or survived the Holocaust...it is inexplicable, inexcusable suffering on a mass scale with no discernable rhyme or reason. I don't pretend to understand the whys of this world, but I don't believe that God causes these things. We are born into a world in which human beings have freedom to choose a plethora of actions and those actions have consequences far beyond themselves, stretching out into the vast world in a myriad of ways, both positive and negative. Chemotherapy is an imperfect way of curing cancer: it may kill the "bad" cells, but it also has side effects and often damages good cells. It seems to me that Maggie's cancer has responded well to the chemotherapy, but that chemo has side effects that doctors, with all their knowledge, can't seem to manage...that reflects our imperfect human knowledge. Perhaps only God knows the big picture. Our only option as humans is to grab hold of each moment, never knowing what tomorrow brings, and love each other and care for each other as best we can. Treasure every moment with Maggie, even those that reveal the depths of despair. I would give anything to hold Lydia just one more time.
I keep getting drawn to your page all day. Our prayers our constant for you, Andy and Maggie. Please remember you are not alone, God is there for you. You and Andy must continue to be supportive to each other but let your friends and family help you. They truly want to be there for you and even if it allows you some alone time, that's okay, let them do it. You need to be there for Maggie but that includes taking care of yourself.
Annette Reinhart Purkey
Please know that there are people out here thinking of all of you every single day. Multiple times a day. I can never begin to understand what you are going through, but I understand your frustration. Positive thoughts to you...
What can I say? Nothing that is going to make a difference. Please know that I think of you, Andy and Maggie daily and am praying for you. I don't know how you deal with the "why" of crappy, unfair events in life except that through healing the why doesn't seem to matter as much as God's constant love.
None of what you are going through is fair. At. all.
Still praying and pleading for Maggie.
All of your questions are completely understandable. As is the fact that all "answers" seem unsatisfactory.
I keep thinking of Job and his superficial comforters. And that, as we have learned, Mother Theresa often felt that God had abandoned her even as she continued her work with the abandoned sick and poor.
May God grant you the courage to keep "living the questions," as I believe the poet Rilke said.
As well as to ask and receive help from friends and family in whatever way they can.
Love and prayers always.
Great Aunt Phyllis
Dear Andy and Whitney,
My name is Dave Hood and a friend of yours referred me to your Blog. I am Pastor at Fort McKinley Church in Dayton and I'd love the opportunity to talk with you about allowing God to use our church to begin to answer some of your prayers. Please feel free to e-mail me at dhood@ginghamsburg.org or call me at Fort McKinley 937.277.7484.
In Hope
Dave Hood
Hi Andy and Whitney,
I realize you don't really know me... I was the matron of honor at Katie & Rob's wedding. They gave me the link to your blog and I've been following Maggie's story ever since. Sickness of any kind is awful, but there's something about this happening to someone so small that just tugs at every heart. Every person just instinctively knows that such things simply shouldn't happen to a little one like Maggie. Every time I open up your site, I keep praying there will be good news; yearning to see that something will have turned around for the best. No doubt you begin each day with the same desire, only magnified much more.
Ever since reading your last post I've been able to think of little else other than what you're going through. As I changed my 13 month-old son's diaper today, I actually thanked God for poop :) and prayed that Maggie's diarrhea would come to an end and there would be healing for her soon. My guess is that everyone who reads your story prays the same and wishes they could do more; that they could somehow do something tangible to make things better.
Thank you for being so open as to share what you're really feeling and going through. Just wanted to add one more voice of encouragement... that there's yet another person praying for healing and a restoration of all things.
Hey Whitney & Andy,
I understand your loss of faith that God cares what happens in your lives or to your darling girl. I have no Bible quotes to offer. Just common sense ideas...do you have a support group that you attend, people who are struggling through this treatment with their babies as you are? Have the two of you taken any time, even an hour, to just be together? Have you taken time to just rest quietly, even for an hour, so that your reserves begin to recharge? You are both truly amazingly strong, don't get down on yourselves. God bless you all...but remember that we might not recognize His blessings when they come. -Christina
Since I read this post, I've been praying constantly for you and for insight into any way I can encourage you. Then I read through all the posts and God is in the words here, as well as in your daily. It doesn't make sense, it isn't fair, but somehow I know he'll get you through it.
Debbie M.
Again another heart breaking and praying for all three of you. Thank you for being so honest. You have been through so much. At your lowest, God is still with you and He does love you. Continue to look up! The many encouraging words from others here have hopefully helped you to be strengthened again. Actually, these people are God caring for you. He works through people. He loves through people. We continue to pray and hope for you while you cannot.
I was praying for you during the night and thought of something I wanted to share with you.
Remember how you hold Maggie and carry her and she clings to you in love and trust whether she recognizes where you're going and doesn't like it or whether it's all new to her. She may cry and struggle a bit, and ask to get "down" but that doesn't bother you because you love her.
God is holding you, carrying you through this. Some of it is familiar and unpleasant and some of it is new and strange. You're crying and struggling and that's okay. You want "down" and that's okay. God is your father and he loves you when you struggle, when you want out of the situation, when you cry and complain. He won't drop you. Just keep clinging.
Debbie M.
Whitney,
I don't have any real words of wisdom for you. None of us understand why God allows the hurt, pain and tragedy that befalls children every day. But even when we can't understand we must trust. I am praying that God will give you a peace that can only come from Him and that He will surround you and Andy and Maggie with His loving arms. I'm too far away to volunteer to physically help but I do pray that God will send faithful friends your way that can help lift and carry the burdens that you are carrying. Keep on trusting!
Your baby so cute:)
Whitney and Andy,
You probably don't remember me. I'm your second cousin on the Lehman side. But that doesn't matter now. My mom follows your blog daily and keeps me updated. I, too, read it frequently.
Anyway, I was compelled to comment today. Not because I have any words of wisdom, advice or consel. Just because I'm also a mom. I can't imagine what you are going through, but I do know what it is like to question God, wrestle with His plans and ways. All the words/comfort/encouragement I can think of sound hollow in the light of what you are experiencing every day. I just wanted you to know that someone else out there is thinking and praying (even if that seems hollow right now) for you and Maggie.
Amy Lehman Mikesell
Bluffton, Ohio
Amy Lehman Mikesell
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