I've been quite lately. It's not that I haven't had anything to say, but rather I haven't known how to say it. I'm struggling. Some days it's hard to even walk out of the house. The weight of Lucy's current reality is hard. I pray about it and I seek guidance but my fleshly desire to make things better only keeps me from ever finding peace.
Every day I try to figure out how to fix the situation. Every day I wait until I pick Lucy up from school to find out if the day was good or bad. Was she able to focus today? Did she read today? Did she cry 4 or 5 times? The impending end-of-school has me beside myself. Will she be ready for 1st grade? Will a summer of tutoring get her up to speed?
And because I can't find the answers and I can't fix the problem, I keep moving. Moving in 5 directions all at once. Moving to the point of it all falling apart. Staying still only allows my mind to fixate on the really crappy situation Lucy (and we) are in. Please don't preach or judge. I do realize how fortunate we are to have Lucy with us. I know what a blessing it is that she is even alive. It still doesn't change the fact that cancer stripped her of her independence, her freedom and her mind to a degree. I will live with this for the rest of my life. It is such a heavy elephant on my chest that I can hardly breathe sometimes.
Every night we read Ella and Lucy's devotional book, Jesus Calling for Children. This past week, there was one entry that really spoke to me. It said "Sometimes when you try to be still, fears and worries creep into your mind. The you start planning ways to avoid the things that scare you."
I couldn't have said it better. Those sentences were written about me. The problem is, I'm not sure how to stop. How do I fix it? So far, I'm failing miserably.
I want to say thank you for all the wonderfully positive comments that were left on this blog and my Facebook page about our TV spot. We were honored to be apart of it but I have to admit that it was hard watching it being replayed. I've cried a lot since they aired. It's all a process, I know. I'll eventually come to grips with our new reality, but right now its not easy.
Prayers to ease your heart and mind. There will be good days and bad days. I pray the good days far outweigh the bad days for Lucy.
ReplyDeleteKate, My thoughts and prayers continue to come your way. "May God give you strength and comforts as you face and fight these battles. May He give you the peace that only He can give. Let God "prop you up on your leaning side" as you lean on Him. Amen."
ReplyDeleteSweet Kate (who I feel like is my dear friend...that I have never met), I was so proud when watching the clips of your story. You are so brave! Lucy is so amazing. I have been following your story almost since the diagnosis. I have prayed so many times for that beautiful little girl. I am so thankful for your family. You have truly taught me to appreciate each moment with my little ones. When they are sick (just a virus or cold) I feel nearly overwhelmed with thoughts of how hard it must be for you and at the same time feel blessed, lucky, guilty, scared (that at any moment it could happen to my family) and thankful. You are a wonderful mother and a blessing to me! Thanks for always sharing your honest feelings. I feel that God has used you and Lucy more than you ever may know.
ReplyDeleteJoel 2:25 I will restore to you the years that the swarming locust has eaten ...
ReplyDeleteOh Kate, poor out your heart without fear of judgement. How can we judge you when we haven't walked in your path?
ReplyDeleteLifting Lucy, you and your family up to the Lord for His healing touch and for His restoration in Lucy's body, mind and soul.
Praying and praying
Kate, I think you are so normal and such an awesome mommy. I don't most of us can even remotely grasp what your heart must feel. On these extra hard days, when your mind cannot slow down, just know that your sisters and brothers in Christ are lifting you up in prayer. I will specifically pray for the Lord to help your mind find rest when you are feeling scared. Your honesty and transparency are such a blessing to others who suffer. As believers, we are so quick to just try and give a Sunday School answer and downplay someones emotions, aren't we? I hope you will continue to be transparent. The church needs more people like you who are honest about their struggles. God bless you, Kate.
ReplyDeleteThis is just a thought. I have 4 kids, 3 have learning disabilities. I homeschooled before I realized they had a learning disability. That was the best situation for them. It took the pressure off and they were able to go at their own pace. My daughter was barely reading in the 5th grade. Today she is 26 and has a paramedic degree and helps run a ministry. I worried and fretted so much about what she would do but God is faithful!! My kids will never be rich or famous but they love Jesus and had a wonderful childhood. There are plenty of opportunities for socialiization. Praying for y'all!!
ReplyDeleteI think what you are feeling is completely normal. When Lucy was so sick, it gave you something to focus on and something to fight. All of your thoughts and energy went toward that fight. Now that you are beyond that fierce fight, you have to allow yourself time to mourn what you lost. You've lost your life and family as it was. It's okay to be sad for what was lost. You'll reach a point where the sadness isn't so big anymore. You'll get past the "if only" thinking. You'll be able to embrace the revised version of your life and go on.
ReplyDeleteLife can change in a blink of an eye. We almost lost out adult son this past week. He died 4 times. After 5 days of no response they told us he was brain dead & the next day he regained consciousness. A miracle, but with that miracle comes a very sick man (our son). His heart can't beat without a pace maker & even then it's only beating at 50%. We are caring for his three young children. I can barely make it to tomorrow. I understand some of your feelings. We are ever so thankful for our miracle, but we are frightened about the future also. Sending prayers for your situation & God bless your family.
ReplyDeleteNo Judgements Here Kate....Just HUGS and LOVE for you all! You have been through A LOT!!! No wonder you feel how you do!!! I once read an article that stated it is really common for patients and families of loved ones with Cancer to go through Post Traumatic Stress - and NO WONDER...It's a TERRIBLE thing!!!! I'm here if you need a friend Kate...I hope you know that.
ReplyDeleteI'm not an expert. Just a mom, wife and caregiver to my mother.
ReplyDeleteI think all you are feeling is normal. I also think you are doing an awesome job.
I too have a hard time with the silence, where doubts, self criticism creep into my thoughts..but I receive a nudge, The Great I Am is with me every step of the way.
Praying for you. Praying for your family.
Becky
Hey Kate, my fear is nothing like you have, but I am going through the same issue right now. I have something I am facing that just will not leave my mind. It's on my mind 24/7. I know all the verses in the Bible about fear, but right now that is not helping me. At least in this small area, I do understand what you are talking about. I love you and your family so much. You are such a blessing and inspiration to me. Kate, your honesty about all you have gone through and what you continue to go through helps those of us who struggle also. Kate, you are a very precious, wonderful person. I love you with all my heart. Aunt Jill
ReplyDeleteI really feel your hearts cry! It's a process of mourning and you need to.... I won't say It will ever go away and at times it may feel as though its an ocean (waves coming and going, strong current, rough waters, calming waters)... My 2yr. old passed away suddenly 6 years ago and the emotions are never the same, the pain is always there..... Be encouraged that you are not alone!
ReplyDeleteHave you ever considered homeschool? I know every family is different, but we love it! :)
Much love to you...
I'm a mom with struggles too. The weight of my son's future weighs so heavily on me some days I'm sure I could just crumble! Keep pushing Lucy to reach her fullest potential. I know it's hard! It's ok to have bad days! Hang in there. We are praying for you.
ReplyDeleteSondra
Thinking of you..
ReplyDeleteThinking of all your children and your husband and your family.
Praying for your strength, love, wisdom and faith.
Keep on keeping on:)
xo Lauren
Kate, no judgement here. Prayers, thoughts, and hugs for your family.
ReplyDeleteKate, I pray that Jesus will help you through this time in your life, I pray that he will give you peace to accept these things that have happened to not only Lucy but to your whole family. I pray that He will give you the ability to face those things that cause you fear and that He will be able to help you through them. I can only imagine the things you have felt, seen, feared, or worried about. But God knows them all. If God leads you to it, He will lead you through it.
ReplyDeleteKate,
ReplyDeleteYou are a mom, plain and simple. We are fixers and want the best for our children. You are prayed over as is your sweet family.
Kate, it's hard when you are living the reality day in and day out. Lucy is here for a reason. God has a plan for her life and He will incorporate her struggles. In the meantime, one day at a time. Live it. Love it. That's all you can do. Let the rest go. I know...easier said than done.
ReplyDeleteLisa
Kate, you are a remarkable Mother. Our God is awesome and he gave you Lucy because he knew that you would be the perfect Mother to deal with the life she had ahead of her. You were chosen of all the Mothers in the world to be Lucy's mom. My prayers are with you and your family. Never second guess your decisions or feel judged for your decisions.
ReplyDeleteAll you can do is the best you can day by day. You said it was like an elephant.....remember you can only eat an elephant one bite at a time but sooner or later that elephant will be gone! Blessings to you.
ReplyDeleteMy family prays for Lucy and family every day. I don't pretend to know what you go through, nor do I judge you. You have been given a difficult path to follow, and you are doing a wonderful job. Just remember when you have these feelings to give them to the Lord. He has carried you all through so much, and will not fail you now.
ReplyDeletekate, it's been a wild few months for my family - nothing on the scale of lucy's challenges, but challenges nonetheless - and the hardest part for me has been what i think of as letting go. i take my concerns/worries/fears to god each time i speak with him ... but then i grab them back when i am done with that conversation, and continue to struggle to carry those burdens. matthew 11:28-30 has helped me a lot, as i try to let go and walk away knowing he will take better care of all of us than i ever could alone: 28 "come to me, all you who are weary and burdened, and i will give you rest. 29 Take my yoke upon you and learn from me, for i am gentle and humble in heart, and you will find rest for your souls. 30 for my yoke is easy and my burden is light."
ReplyDeletemy prayer is that this might help you, at least a little, as it's helped (and continues to help) me.
Thank you for sharing your heart, your life, and your family with us.
ReplyDeleteprayers and hugs
Trust me, Kate, no one is going to judge you! If anything, all any of us would do is put our arms around you and hold you!
ReplyDeleteHi Kate, I want you to know that we still pray for your family. With that being said I will not pretend to know the struggles that you have gone through because I get the blog version and have never had that be my reality. However, you are a mom first and with that we all have expectations and hopes and dreams for our children and sometimes that has to be revised. Not an easy thing to do for most moms much less for a mom whose child has been through as much as Lucy has. I hope that things will calm down a bit for you in the coming years and that Lucy will start to understand her limitations more as she gets older. I truly believe that she is going to surprise everyone with the amazing things she's going to do in the future. Keep smiling and loving your family and life.
ReplyDeleteno judgement here Kate....you just want the best for Lucy and we understand.
ReplyDeleteThinking of you and praying you find the answers.
annie in VA
Oh Kate, you sweet beautiful lady. Your honesty is so true of many of us with daily struggles. What you are feeling is normal because nothing about your life is normal. Everyday is new, but everyday has so many unknowns and unknowns are scary.
ReplyDeleteGod Bless You For Your honesty and know many prayers come your way.
Kristi
WA State
Praying for you! I can't imagine a day in your shoes . . .so no judgement - no advice . . .just lots of prayers for God's grace to wash over you today . . .and for TODAY to be a good day!!!
ReplyDeleteYou and your family are still in my prayers. Sometimes we just have to admit we can't fix it. Only He can.
ReplyDeletedon't you just love Jesus Calling...I have the big girl's copy(women's):)..but have gotten the teen version and the child's to give to some of my grands. Kate just keep on reading the Word,believing the promises God makes in it and trusting...it is all any of us can do in any situation.your mind,body,and heart are just worn out from the last couple years kate!!....give yourself permission to let down and not do well....it is okay to just say....i just can't!!!!!!!!!!!!!!!!!!hopefully you read the love and concern and feel the hugs through these words...and always the prayers!....
ReplyDeleteThe majority (if not all) of the mothers that go through what you have gone through would be having the same doubts and fears. I have a picture in our school room that says, "Be thankful when you are tired and weary because it means you're making a difference." At the end of the day when you feel so weary with the struggle remember that you ARE making a difference. Lucy couldn't ask for better parents then the ones God gave her.
ReplyDeleteKate...did something happen that we are not aware of? Has Lucys situation become worse? Your post the other day seemed so positive, that I was wondering if something new had happened. No judgements from me...hugs and prayers to you all...
ReplyDeleteGreive what has been lost. Make sure you get the counseling you need too. All of you are recovering, not just Lucy. You and your family have been in the thoughts and prayers of my family for over 2 years now. I have little ones similar to you and I can't imagine the day to day struggle this is for you momma. Know that you are wrapped in the love of God but also his children as well. Hugs from Oregon.
ReplyDeleteKate -- You, Lucy and your family are continuously in my prayers. I haven't walked in your shoes but you appear to be wearing them well. It is hard to mourn what has been lost. Yes, you have Lucy but not the Lucy you had before cancer. There is no judgement here, just arms wrapping you all in prayer as your live your new reality
ReplyDeleteKate, I truly understand what you are feeling. My family went through something very similar when my little sister regressed to autism when she was almost five. It was like her future was robbed from her before our very eyes, like Lucy, she had so many things stripped from her that we didn't know if she would ever recover. At the time, we didn't know what kind of quality of life she would have, and it was scary! I had lost hope that she would ever be able to live a "normal" life, with all of her disabilities and behavioral issues, but I have never been so happy to be wrong. There are so many opportunities out there for people with disabilities, whether severe or minor. We are blessed with so many people who are dedicated to helping my sister become as independent as possible as she nears adulthood. It may not be the plan that we expected for my sister, but it is the one we have been given. Even ten years later, and even though we have been blessed during our journey with autism, it is still extremely difficult to cope with reality at times. I know it is especially hard now, but I truly do think that it will get better! So hang in there. You are strong. Lucy is strong. Your family is strong. It will be okay.
ReplyDeleteLots of Love,
Lauren
I loved your stories that were aired, thanks for sharing the links. That quote was also made for me! :) I worry all the time about Owen and we haven't even hit school age yet. Kindergarten is creeping up in the fall and I'm a hot mess. Many prayers for Lucy moving forward. I hope you have the best summer!!!
ReplyDeleteKate, will send you a little book I found here in Florida as we have spent our 6 -7 months here. It came from a shop here in Seminole where we live a little over half a year. When I saw it several months ago, it made me think of you although things were going well at the time for you. I bought it back then. Because of times like this, I think you will appreciate its words as I did.Will get it in the mail before the week is over.
ReplyDeleteKate is have a lot to deal with and yes you are blessed to have her alive and well. BUT it doesn't make it easier to deal with the possible damage caused by cancer. Or the day to day struggles caused by it.I have 4 kids and live in an area with no family and no help. I recently went on an antidepressant and it helped me more than words can say!!! I felt like I was drowning inside my own body. I dreaded everyday but was able to do it because I had to!! I was never one who couldnt get out of bed b/c I had to. Sounds like maybe you need a little help even if its just for a little while to help your mind stop racing and help you relax a little. Doesn't make you less of a person Kate. You need some help for you!!! LIke I did. My husband travels non stop and I just couldn't do it all anymore. All my kids are in sports and I was all over the place trying to be 4 moms in 1.
ReplyDeleteI think I know exactly how you feel. My husband went through job loss and when it was over was when I seemed to fall apart. I've heard this same thing from a friend of mine who is a breast cancer survivor. Maybe it's because God and the Holy Spirit are not so close to you since things are getting back "to normal." And probably because you can't stay on cloud nine forever about Lucy still being alive-reality has to set in. I think it is anxiety and completely normal. You have been through an awfully lot. I think you still have a lot of things to process. Hang in there and keep relying on Him! And perhaps its the devil trying to cast doubt. A friend posted this on facebook and I wrote it down for myself. I bet you can identify with these (I know I did!) : God's voice stills you, Satan's voice rushes you; Gods voice leads you, Satan's voice pushes you; God's voice reassures you, Satan's voice frightens you; God's voice enlightens you, Satan's voice confuses you; God's voice encourages you, Satan's voice discourages you; God's voice comforts you, Satan's voice worries you; God's voice calms you, Satan's voice obsesses you; God's voice convicts you, Satan's voice condemns you. I guess I'm just trying to say I don't know the answer but maybe you would feel better to know you are not alone.
ReplyDeleteSo glad you hear you have Jesus Calling for your children. But do YOU have one for yourself? In the past 3 years (the most difficult 3 years of my life) I have been buoyed up by the encouragment I receive from reading Jesus Calling each day. I am learning to keep my eyes heaven-ward -- to be aware of His continued Presence and Peace. I highly recommend this book for adults (and children). It speaks directly to my heart on a regular basis. I have followed your blog for a long time and pray for your family often.
ReplyDeleteBlessings to you and yours.....
When I go to your blog, I'm excited to see Lucy do "normal" things. A year ago, I sat in front of my computer crying because I thought Lucy was going to die.
ReplyDeleteI admit, I don't have to go through the daily struggles that you have to go through. But when I look at Lucy, I see a bright little girl that has made an impact on so many people and an amazing family.
Much love and peace to you all!
Kate, you do not know me but I have been following your blog for over a year now. I can totally relate to your emotions of mourning and loss. When my son was diagnosed with a very severe disability when he was 2 I had to mourn the loss of our previous dreams for him. A friend of mine gave me a book called " You will dream new dreams". While we have dreamed new dreams for our son there are still days when the wind blows a certain way and I still long for that typical 9 year old boy I was supposed to have. I keep waiting for this feeling to completely go away. Although it hasn't I guess I am just more aware to let myself grieve when I need to. Thank you for sharing your struggles. I will keep you in my prayers.
ReplyDelete