When I get scared, confused, feel as if things are spiraling out of control, I lean so heavily on God. I pray--oh, how I pray. (Like when we were last faced with this feeding tube issue.) I pray with such amazing fervor. And I mean every word that I pray and I truly believe God can and will answer those prayers. Then things begin to settle down and my mind is removed from those issues that were burdening me and I get distracted by everyday life. My kids, my house, my husband, my friends. All of a sudden, those fervent prayers decrease to a morning prayer and night prayer. You know, when I find time.
I start trying to work things out on my own. I start answering my own questions, solving my own problems. And then....BAM! Smacked in the face again by the reality that I have abandoned the very God that has so many times rescued me from myself. Today is one of those days.
Jack has been sick, Lucy has been sick. I am scared that these past 3 days have pushed Lucy back so far that she is going to end up with the G-tube after all. We are having to make some hard decision about school for her next semester and I have been making myself crazy with my calendar trying to make it all happen.
As I stood in the shower this morning with my mind racing with a list of to-do's a mile long I just lost it. I cried and cried. I am angry with myself for doing this again. Why? Why do I do this all the time? Why can't I just live a life of constant submission to God? Things sure would be a lot easier and a lot less stressful if I would. This will be a struggle for me the rest of my life. Thanks to this type-A personality I was "blessed" with, letting things go just isn't my cup of tea.
So, here are the things I am letting go of today:
1. We have decided not to send Lucy back to school in the spring. 2 things are going to have to happen. We either have to find a tutor that can come in, or she can go to, every day for at least 2 hours a day. Or, I have to find a sitter who can come over every morning and watch Jack so that I can teach Lucy. I know what I want to happen--I want to find a tutor. However, I am open to whatever God wants. I just need to get an answer soon. There I go again! This morning I had typed out an email/text sending it to every person I know asking for suggestions for tutors or sitters. But I never sent it. Something just didn't feel right about it. I am going to sit back for a few days and see what will happen. God will answer this for me. Just not right this minute.
2. I am worried about Lucy's weight. She is so weak. She has not played with her cousins at all this trip and has spent most of her time curled up on the couch. I want so desperately for her to be normal again. It really, really makes me sad and angry. But I know I can't force her to be something she is not ready to be yet. I know she will get there. It is just going to take a lot of time. We go back to St. Jude on Friday and I will heed the advice of the Dr. W. If she feels we are too far behind the curve, then a feeding tube it will be. I will accept it and move on and be very grateful that I got to have my family all under one roof for Christmas.
3. Fear of the future. And when I say fear I mean total, gripping fear that makes me want to vomit. Yesterday Erik and I did a little after Christmas bargain shopping. I found a major steal on some little knit dresses for Lucy. Out of habit, I picked up a few Christmas prints for the next year. As I was looking at them I allowed myself to think the unthinkable. "What if she's not....." I can't type it. Thinking it was hard enough.
So, this is where I am today. I'm a mess. But I have history to look to and from my worst messes is where God shines the brightest.
I am praying for you in this time. I love your blog...and your writing. I hope your day is as awesome as your blog is!
ReplyDeleteI found your blog...through one blog to another.
Aw, Kate, please PLEASE don't beat yourself up. God made you and me and all of us human. You are allowed to have fears and doubts. Prayers headed to you, for you. I can't believe you're still standing upright after everythink YOU have been through (also ok to be a little selfish and think of yourself every now and then). And, of course, prayers for Lucy, as always.
ReplyDeleteI am praying for you. I prayed the morning, and I am going to pray right now. Its because you are human and we live in a world where Satan whispers in our ears constantly, causing us unimaginable fear. I can only imagine how hard things are right now. Just know that people you might not even know are praying....
ReplyDeleteSuzanne and Clay Culpepper
www.theculpeppers.com
Oh, friend, I SO understand. Every single word. Praying for peace for you! Love you!
ReplyDeleteSarah
I don't know you personally but I follow your blog. Your fear, your pain that you fell is normal. God understands that we all have time where we fear the worst, we question ourselves and our judgements. You are doing a great job of nursing Lucy to a healthy place and taking care of her and Jack while they're sick. All while being a grea wife and a wonderful mother to all three kids. Lucy is a fighter. She will do great whether you're teaching her or a tutor comes in. Have faith in your abilities! You are AMAZING! I'm praying for Lucy and good results at St. Jude tomorrow! If you ever need anything from Kansas just holler! Royal
ReplyDeleteI have been following your family's story since the beginning of Lucy's journey. You need to stop being so hard on yourself! I know that when I read your posts, especially the ones where you are at a low point, you are still a faithful child of God! We are all human and you are a human who has been put in a situation that most people can never understand unless they have been there. Lucy is such a fighter but she is also a tiny little girl! You are making the best decisions for her and the rest of your family. We know as Christians that we are supposed to leave everything in God's hands, but as humans, this is one of our biggest failures! However, God knows this about us and He accepts it and waits patiently for us to come back and say "Ok, what was I thinking, you take it from here!" He has this as you know but if there are some days where you need to cry or try to take over, that's called being an awesome mother! You have so many friends, family and strangers (like me), praying for all of you and I want you to know that I think the world of your family and I will continue to pray for Lucy's recovery. She is such an inspiration! And SO ARE YOU! but as today, you are a mess, I will double my prayers for you!
ReplyDeleteMommy of 2 in Arizona,
Samantha
still praying from dallas.. praying that you can continue to rely on God through all of this. your blog is an inspiration to me, i don't know how you do it!
ReplyDeleteKate,
ReplyDeleteYou are a very, very smart woman. You can home school Lucy with no problem at all AND look after Jack. I have home schooled my kids the whole way, my son right now is doing grade 11 and my daughter, I schooled right through 1st year university; Bachelor of Science majoring in Biology. I have a grade 12 education, if I can do it anyone can.
I will be praying for this decision and of course I am holding you all up in prayer and always praying for Lucy.
Praying and praying,
<><
I follow your blog from Ohio and honestly can't remember how I found you! I pray for you all the time and I pray for Lucy too! I just want to suggest that ask your school system to send in (to your home) a tutor for Lucy. It should not cost you a penny and the tutor would keep her current with her class. Don't allow them to say no...you have that right! Hope 2012 is a better year for your family..GOD BLESS YOU!!
ReplyDeleteI was hitting the after Christmas clearance at Kmart today. At check out they asked if i wanted to donate to St. Jude's, thinking of Lucy I said yes.
ReplyDeleteI am still keeping your family in my prayers.
You wouldn't be human if you weren't overwhelmed! Good job on waiting on the tutoring-God will provide a way if it is important. School is not the most important-Lucy's health and your mental health are. Cut yourself some slack and lean on God to arrange things. He knows what is essential and at this point you need to concentrate on the essential, not what everyone else is doing. Your situation is unique so do what is right for your situation. I'm praying u are blanketed in peace about all the details of your life. We all lean better on Jesus for the big stuff!
ReplyDeleteDear Kate, I'm not even an Amy Grant fan, but I keep thinking of her song "Better than a Hallelujah" as I read your blog today. I don't understand why we go through sickness, death of loved ones, extreme financial woes or the silence of desperate loneliness, I just know that our Heavenly Daddy loves us, and He takes us however He can get us.
ReplyDeleteWith the eternal love of the Father,
Charity, Atoka
Oh, Kate, I am so sorry for Lucy's struggle with being sick (again) and having such a hard time getting back on her feet. I'm sure there's got to be a "we're supposed to be past this" feeling in there somewhere... Please know that we continue to pray for her, for you, for the family, daily! ... And I'm sure you're not alone on the prayer issue. You can certainly throw me into that boat. When your heart is heavy, it's as if you are in a constant state of prayer; however, when your heart is "light", that constancy sometimes dissolves into a few minutes here & there. Again, we are PRAYING for Lucy, for you, for the family, daily!
ReplyDeleteI don't know how to pray and let it all be on God's shoulders. I don't think many mothers do. We as mothers are used to solving the problems and fixing the ouches. I'm praying for your peace and Lucy's health. I pray that God leads you to the choices that need to be made for your family.
ReplyDeletexo
Tanya
mommy to 5 kids in Canada
Be strong - you know you can be. Lots of people are praying for you all; it will work.
ReplyDeleteTake care
xxxxxxx
Kate, I do understand how you feel about buying things for Lucy, for in the future. I hope you will remember that Lucy may be here,in years to come, and someone else may be gone. I use to say, when my Mother is gone, I will do different things, until one day it hit me, I may go before my Mother. Sickness or age doesn't matter to God, He calls for us when He is ready. I hope you can try and live each day to the fullest, and not worry about tomorrow. God will take care of everything. I went yesterday and bought all the gift bags and wrapping paper, for next year, later I thought I did get a good deal, but I may not even be here next year. I have followed your blog, and I have cried with you, and I have laughed with you, I don't think I could be as strong as you have been. Just keep leaning on God, and spend you time with your family. God will take care of the rest. I pray every night for you and your family. Put your trust in the Lord, and buy those dresses.
ReplyDeleteyour words are so humbling and something we all struggle with. it is when we allow GOd to take the reigns completely (and I mean with every fiber of our thoughts, words, actions, and fears) that the true plan is unveiled. it is not in our time, nor the time we may think is His time, but the way of our Father who knows what is best for His children. It is a tough thing to give up control and I will pray relentlessly for Him to take your fear, doubt, uncertainty, and exhaustion over trying to figure out what is the best plan for your family. You are His child as much as Lucy is and He will truly take care of you both.
ReplyDeleteAs much as I hate to say it.... YOU ARE NORMAL. Everyone goes through doubts when they have a child going through a life threatening situation. My son David, born with heart defects. Could have a heart attack and pass away at any time. Scheduled for another open heart surgery on my birthday January 17th. There is a risk he won't make it through surgery. If you let yourself think of the 'what if's' all the time you will go crazy. What if she's still here? Live your life day by day, pray day by day and enjoy each and every moment you have. Hugs to you.
ReplyDeleteKate, you are a human being. God allows us to feel all sorts of emotion. It is what keeps your heart from hardening. I don't believe for one second that you have forsaken him. He is there with you every step of the way guiding you even when you think you are taking it upon yourself. He will not ever leave you. God loves you and He will lead you to the right path. I am always and forever praying for your fight to give strength and light back into you precious angel's life.
ReplyDeleteI will say my own fervent prayers that God brings you peace Kate. No mother should ever have to worry herself sick over these things and no child should EVER suffer as your sweet Lucy has. I pray that you both receive what you so desperately need.
ReplyDeleteDear Kate,
ReplyDeleteI'm sorry to hear that you are having such a hard time right now. I just wanted you to know that I'm praying right along with you. My family and I were traveling back home today from Christmas vacation, and we passed St. Jude's along the way. I sent out a special prayer to Lucy.
Love,
Lauren
Hang in there. One day at a time, one day at a time......
ReplyDeleteI have that fear of the future. It is more tan fear. It is terror, and, oh, what my imagination can do with it. I'm like you, Kate. I so want to surrender everything to God, and I know things work out best that way. What more can we ever want than God's will? He has all the power, the rule and the over rule. He knows best, even when I think I do. My mind keeps racing ahead to handle the troubles I know are coming tomorrow. I keep pulling it back to ask myself, "What can God help you do today?" It's hard, hard, hard.
ReplyDeleteI'm praying for you and your family, that the children get well, that you catch a break, that God, in his infinite wisdom, radically intervenes when and where you most need him to.
Hugs to you tonight.
Bless you! I am continuing to pray for Lucy and your family. About the tutor...in Alabama, we have teachers for homebound education in the public school system. A teacher/tutor is assigned to her and will teach her at home or in the hospital. That may be something you could check into.
ReplyDeleteI found it interesting that today is "Good Riddance Day." It meant a lot of different things to different people, but I believe it has a special meaning for you today. Sounds like it's a great day to say "Good Riddance" to doubt and fear. Our God is a GREAT and MIGHTY GOD and he wants to remind you that HE is in control. He loves you, and though we've never met, I've come to love you and your family too. You have touched so many with your blog and I know that you are making a difference in so many lives. God Bless you and your family.
ReplyDeleteYour post breaks my heart and I cannot imagine all the emotions you must be feeling. I found your blog through a friend and I have to say I think of Lucy so often. I am an elementary teacher and 6 years ago an eight year old boy in my class was diagnosed with cancer and given less than a 5% chance of making it. I am happy to say he is now in highschool and cancer free. I went to his home afterschool and homeschooled him. The District paid me and it was a free service to the family. Please check into this because there is no reason you should be having to pay and I think it would be good for any child to have someone else teach them. My little guy would have rough days and he didn't always want to work, but even though he gave me fits here and there...it was nothing like what he gave his own mother. :) God is Good and God is totally in control!!! You are human and you worry, but He is the one who has this under control! God Bless!
ReplyDeleteI am a homebound teacher in Texas. I don't know exactly how it works where you are, but here, all you need is a form filled out by a doctor requesting homebound services and a teacher will provide 2 hours of instruction (which is considered part time homebound) to 4 hours of instruction (full time homebound) per week. This service is free and should be available to you no matter where Lucy was in school before. I have been praying for you and Lucy and made a donation in Lucy's name to St. Judes. Hope you get all worked out easily.
ReplyDeleteYour faith is more powerful than you even realize. When I would have been knocked down and unable to find faith, you always do, even if it isn't right away, your an inspiration to every person you meet, cause again, when many would turn away or give up, you pull through and find your strength. You are always in my prayers.
ReplyDeleteKate,
ReplyDeleteI wanted to let you know that I was working at my cleaning job today (between 4 and 5 pm) and heard what I call "Lucy's Song" --the song played on your blog, which I have never heard anywhere else) playing faintly from the salon next door. I don't know what was going on for you at that time, but I stopped immediately and prayed for you and Lucy. I believe God uses things like that to prompt us when our brothers and sisters are deeply in need of His presence. You are all continually in our prayers and I am hoping that each day Lucy gets stronger and kicks cancer in the rear. :) May God strengthen you and hold you up each day.
---Sandra
I am a public school teacher. From the sounds of it, Lucy would qualify for what is called "homebound services". This a service that school districts have to provide for students who are unable to attend school for various reasons. I have a student in my class with leukemia and provided services for him when he was unable to come to school recently due to his treatments. In some cases it might be the child's actual teacher or simply another teacher. Like was previously said, this does not cost you anything and whoever works with Lucy would be able to keep her up as much as possible with her class or even go back and cover things she has missed. I would highly recommend you look into it. All that was required was a note from my student's doctor saying he could not come to school. If Lucy's doctor says she is unable to attend school, the district HAS to provide those services to her.
ReplyDeleteMy prayers are with you, Kate. I feel the distress you are surely feeling in every word you have written. Just this morning I awoke early to pray for a friend who is also suffering and picked up a book that I am reading by Max Lucado, "Cast of Characters". I found myself on the chapter entitled, "I Can Turn Your Tragedy Into Triumph". He quoted Romans 8:28 and then said to put your personal tragedy in the blank..."In _____ God works for the good." God is working in you life and I KNOW he has a wonderful plan for you, Lucy and your entire family. I pray right now that he will shower you with His peace. Peace that only He can give. God bless you, Kate. You have a host of people lifting you up to the Most Holy One.
ReplyDeleteI follow your blog and work in a school district in New Jersey. If we had a child who was not able to be educated in the school for whatever reason, we would offer tutoring of some sort. Maybe the school district would provide tutoring due to Lucy's health status? Your taxes are already paying for education.... just a thought.
ReplyDeleteWe are human! That is what makes us question and worry. You are just like every one of us! You are never alone.
ReplyDeleteHappy moments, Praise God ~ Difficult moments, Seek God ~ Quiet moments, Worship God ~ Painful Moments, Trust God ~~~ Every Moment, Thank God
Lori
Kate, I have been reading your blog since sometime last spring, and have been praying for sweet Lucy and your family. I've never commented until now, but I just wanted to remind you that God made you the way He did. Your A-type personality and struggles with fear don't take Him by surprise. He's not disappointed with you-ever. He loves you and understands your Mama-heart. He just wants to help you and will always have open arms to hold you! Praying for peace in your spirit today and that you are able to rest moment-by-moment in Him.
ReplyDeleteI send loven and peace to you and your family at this difficult time. Please post a wish list for your needs to care for Lucy.
ReplyDeleteKate,
ReplyDeleteCry all the tears you can. Cry until you can't cry anymore. Then, your spirit will renew thru Jesus Christ, our Lord and Savior. You will see that you will be able to take any challenge ahead of you. Remember...you are not alone.
You are amazing. God will help you through this
ReplyDeleteKate, as several others have said, homebound is certainly something to look in to. I am a middle school teacher in Missouri and we provide lessons, activities, etc.... for homebound teachers to use for their students. Simply contact your local public school district.
ReplyDeleteKnow that I continue to pray for Lucy and your family. I look forward to hearing news of more weight gain VERY soon! Hang in there and know that you have many people, across this country, hugging you through their computers! :)
Kate, been keeping up with your blog but never commented. I homeschooled for some of high school. If you do decide to keep her at home, theres a great online company called Abeka that has homeschool workbooks. They are great! Just a tip. :-)
ReplyDeleteKate,
ReplyDeleteI pray for you often.
I also fight my own "I shoudn't feel this - think this" battles.
Only one Person totally understands. And will never, ever reject us for it.
On your "should I tutor Lucy?" question...we've done "selected homeschooling" along the way...and God will show you what is right for this season. (Sounds like you may have your answer??) Some kids do better with Mommy as teacher/tutor, other kids work better with a different "school teacher" so Mom can just be Mommy. We had one of each ; )
I would also add that what is covered in an "early elementary" year can be quickly caught up...so don't stress regardless of WHOEVER is teacher her!!!
I found your blog months ago through another blog(can't remember which one). I've followed the journey since, praying daily for sweet Lucy and your whole family to find peace, comfort and healing. And today I came to catch up and find this post. This post was exactly what I needed. I had just thought almost the same thing about myself that you wrote. In the good times, I pray. But I have a hard time handing control over to the Lord when things are good. But in the bad times I PRAY and PRAY, with a different since of urgency but with no less love. And I gladly give Him control. I just want you to know that I read this with tears in my eyes because I know the Lord sent me to this blog for a reason. Thank you. For your honesty, for your inspiration and for sharing this journey that has so touched my heart. Others should be encouraging you and inspiring you and yet you're doing that for others :)
ReplyDelete