5.08.2012

It's Hard

3 weeks before diagnosis

I talked to my friend Kristie today.  Every time I do, I think I walk away with a big dose of "get it together."  Who am I to complain?  I haven't lost my child.  She is sitting in the living room right now.  I can walk in there and hold her, touch her, kiss her.  At night I go into her room no less than 3 times before morning and watch her breath.  I kiss her checks and whisper "I love you with all my heart."  I do this with Ella and Jack, too.  Kristie would never call me on it, but I bet she would love to say more than a mouth full to me about being a little more happy and less whiny.  But she wouldn't, because she is an awesome friend and a really, really good person.

And yes.  I do have my baby.  But its not the same child.  Most of her is the same.  But there are some things that are missing that serve as a daily reminder that her life may forever be different.  Erik tells me its ok to grieve.  I have a right to do it.  I did lose a child.  I lost the "old" Lucy.  On Feb 23rd, 2011 I lost the daughter that I had known for almost 5 years.  The little girl who just the week before could run, jump and play.  The daughter that worked so diligently in school and constantly proved to be at the top of her class.  I don't have that child now.  And I am spending a lot of time mourning that loss.  One year and almost 3 months later I can say that I am ready to grieve.  I did what I knew to do at first.  I prayed and am very thankful God took over my life.  I think he led my life for me.

The reality of it all has finally sunk in and at times its hard to paint a rosy picture of what our lives are like.  We ride an emotional roller coaster that no one can begin to understand.  I still feel like I am an outcast with my friends.  I find myself jealous of their children and what they have to look forward to.  But every day, I wake up and keep on going.  I have 2 wonderful, healthy children that need my full attention and love and Lucy needs me now more than ever.  Some days I just honestly worry I have nothing else to give.

But, life goes on and I know I will learn to adapt.  I already am I guess.  Everyone in our house is slowly getting used to this new life.  Time doesn't stand still and life doesn't stop.  My children are growing up and I refuse to let my doubt and fear get the most of me. We all have to move on and keep looking towards the future.  I refuse to live in the past for fear that I might miss the blessings of the future.

And, most importantly, these kiddos don't really seem too worse for wear!

Jack, for one, loves that Lucy is home a lot during the day.

Sweet Ella enjoys her time in the yard with our neighbors.

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27 comments:

  1. Bless your sweet heart. Eric is right. And I have nothing "right" to say.... nothing to make it better. I'm sure that allowing yourself to grieve will be helpful. Tears, fits, anger, frustration, and more... give it to Him. He will help you, even when you may be frustrated with Him, or when you may be questioning Him. I hope that you will be able to endure the "It's Hard" days, and that you will be able to see the rainbows as they come.

    I will let you know that we pray for Lucy here at our house every day. My Lawson doesn't go one single night without praying for "Lucy who's in the Memphis". The first pic of her that he saw was one where she was at STJ. I told him when he asked, that "this is Lucy and she is in Memphis at the hospital". That's what he knows her by. And God knows exactly who we're talking about. As a matter of fact, He knows everything. He even knows and understands your grief.

    And just so you know... YOU are my dose of "get it together". It's so easy to forget to count our blessings, isn't it? Thank you for reminding me to hug my boys and to be more thankful for their health.

    Hang in there. So many are praying for you... God has carried you through the valleys and mountains of the last 14 months and He's not giving up on you now. Get comfy and cozy in His palm and let Him carry you. Keep your faith, (even if it's currently weakened), and know that so many care, and so many love your family. We will be praying at our house. :)

    Blessings and hugs,
    Selena Bragg

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  2. My heart breaks for you. Your feelings are normal for a Mama with a child fighting for her life. I am praying for your heart to recover yet again and your day to get better. You do have a right to have good days and tough days. But, we know our strength comes from the Lord. He is always beside you, through good times and bad. You are so fortunate to still have sweet Lucy to love on daily. I know you know that, but I just wanted to remind you that you are covered in prayer daily from so many people. Chin up, and get busy. That pile of laundry will surely remind you that you do have three children and a husband that love and need you each day. God Bless You! Love , Pat Williams, a grandmother in Tuscaloosa

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  3. I think you are normal because I don't think there is anything normal about your situation. You are doing the best you know how. No one could argue that. I think you just keep on praying that God will help you find a moment of joy in each day...even if it is something small to just cling to. I think you are doing amazing!

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  4. Thank you for sharing this. It helps us know how to better pray for you right now. You are amazing and a blessing to so many as you share your true heart with us.

    ((hugs))

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  5. Kate, I totally understand where you are coming from. My name is Lauren, I'm 17. When I was 8 years old my little sister Erica was diagnosed with autism a few months before her 5th birthday. Part of my little sister "died" with her diagnoses, and I know that she will never be the same care free little girl that she was before she became autistic. It has been almost ten years since her diagnosis, and I am now just finally starting to come to understand what it means to have a sister with speical needs, and I have finally been able to start to grieve over my loss. I also find it so hard to be grateful for what I have, sometimes it's really hard to see past what's right in front of you. It's hard to see other kids my sister's age and be reminded constantly of the future that she should have had but will never be able to get. I just wanted to let you know that I understand the pain that you are going through, it's hard, but like you said it's something that you have to adapt too. I wish your family the best. You all are in my prayers!
    Love,
    Lauren

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  6. I get it, my husband was diagnosed and lived with a brain tumor for 8 years. Yes, I felt like an outcast and yes, I mourned the loss of the cancer free Jeff, I mourned our old life.You will get there, I promise!! You are doing so well with your new life. It takes time and leaning on God and you are already doing that. We pray for sweet Lucy and your family daily!!

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  7. Oh Kate don't be too hard on yourself. You are doing fine and your strength inspires so many. I tell my kids that there will always be people in better situations and people in worse so don't compare yourself to others. Run your own race.
    We don't know you, I just stumbled on your blog. We live in Sydney, Australia and I follow you daily. The blog gives me a good 'kick up the backside' on days that I think I have too much on my plate. I am kidding myself!
    Good luck Kate.

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  8. Vanessa FuentesMay 8, 2012 at 4:15 PM

    I truly understand what you are going thru. I have a 9 year old son who has had epiliptic seizures since the age of 1. He has had over 100 in the last 8 years. It is very difficult to watch your kids go thru sicknesses and not be able to do anything at all. I have tried to find a reason as to why he has had so many seizures and to why he is developmentally delay. He takes special classes at school and has to have speech, physical and occuptional therapy at school. He is over weight and gets made fun of because of his weight and his speech problem. But, I truly thank GOD for him being in my life. One year before he was born I lost my son he was 20 months old. He died so unexpectedly and when my son was born and he has so many health issues. I wanted to just giveup. I had been thru the lost of my son and now my other son sick!! But, it just made me stronger! I love all my kids and I am a stron mama that will never give up. Keep your head up, you have a beautiful family and always fight for Lucy!!! You are truly luck to have her in your life everyday. You get to kiss her and hold her everyday. I can't do that with my baby boy I lost. But, I am so thankful I get to kiss and hold my 9 year!! Have a great day!

    Vanessa

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  9. Eric is 110% right you have every right to feel what you are feeling.
    Even though my life is a different situation I get you on this and I hear you and some days you might have an up day and then the next is a down.
    Sometimes when I see my little one throwing a tantrum, I think dang I need to get one of those out too! :)
    Sending you and extra prayer today!

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  10. I can imagine it is hard how your life has changed. But you look in that little Lucy smile and your heart melts.

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  11. I have been following your blog for a few months now...stumbled upon it after reading an "online friend's" blog. I check in a lot and pray for your family! Your recent post reminds me of an article I read today. When you said you find yourself jealous of your friend's kids, this was mentioned in the article. (I will post the link below.)

    My son has Duchenne Muscular Dystrophy. I can relate to a lot of your feelings, although my situation is totally different at the same time. My son's disease will take his life if a cure isn't found. Right now, he is just like any other 8 year old. He is slowly declining though. I, too, often feel like an outcast. I wish we could go hiking with our friends, or bike riding...but we can't. I often feel jealous because they can go about their day without the worry and pain.

    Anyway, I am not trying to turn this onto my family and our needs. I just wanted to let you know that there are others out there that go through the same feelings you do each and every day! Prayers to you all!

    http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html?ref=fb&src=sp&comm_ref=false#sb=3205161,b=facebook

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  12. Kate,
    You are a wonderful mom and you are doing an amazing job dealing with all of this. It is okay to grieve the past and look at this change with a sad heart. You have 3 wonderful unique children and yes, time does not stand still. It moves on and children grow and change. You are doing this and it seems you are doing this very well.

    You are blessed, even through all of this.

    Praying for you all often.
    <><

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  13. Kate, I have to agree with Eric, you deserve any emotion that you have at any time day or night. There is noone that can say I know what you are going through because everyone deals with things differently and at different times. I have to say I think of you daily and I wonder WHY? Why would any little girl have to go through such a horrific thing? She has done nothing to deserve what she is going through. I can not even start to imagine how you carry out your days and every minute have to be wondering what is in store for you the next minute. I know that if it helps to write on your blog and express how you feel today then I will always be here to read it and let you know I am thinking of you even though we don't know each other I will comment to let you know you are not alone, if that helps.

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  14. Lauren - what a wise and lovely 17-year-old you are. Beautifully said. Your sister is lucky to have you in her life.

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  15. Kate - my prayers last night were only for you. You will get through this. Take care and God bless you.

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  16. Kate-
    I can relate to your post. My daughter was involved a a motorcycle accident at 16 and sustained a brain injury that she 'recovered' from but has left her changed nonetheless. I remain ever so grateful that her life was spared however I continue to grieve over what seems lost for her and we are many years down the road. It seems so unfair at times. I choose to look at the positives and you will too but you are human and you will faulter occasionally on this. It's okay...you are allowed. Blessings to you and your precious family...especially your sweet innocent little Lucy. I'll keep you in my prayers.

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  17. You are doing a wonderful job. Whatever emotions you are feeling are okay. Don't let anyone tell you they aren't. It's how you handle the emotions that matters - and everyone deserves a pity party - "Just Get Back Up Again" - and you are. Your husband is right - allow yourself to grieve. You did lose the old Lucy - but you have gained a new Lucy. And such insight on what matters most in life. Thank you for sharing with all of us, so we can know what matters most also.

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  18. Dear Kate, like Selena, I have nothing "right" to say, but just to let you know that I pray for strength and faith for you every day, and for sweet Lucy to be well. I lift you up even now, that you will have a day of encouragement.

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  19. Thank you for your honesty Kate. Not everyone can lay their heart open for all to see. My prayers are with Lucy, you and the whole family. There's nothing wrong with grieving for the life you and your family once had. God understands. He knows us better than we know ourselves. You have a beautiful family. I pray that God will continue to work in your life.

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  20. The cute picture of Jack and Lucy brought back memories. Our son soon caught up to "Big Sister" in height and size. They looked like twins for years...until he got taller than her when he was 5! Now he is a FOOT taller than her ; ) BOTH of his sisters call him their Best Friend.

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  21. I have been following your blog for a year now. I just wanted to let you know that I pray for you and your sweet family! God is the great Comforter and Healer. I pray that you feel His loving arms wrapped around you and your family as you go about each day. I lost my younger sister in a car accident almost 11 years ago. I know dark days and I understand grief. I know that in my darkest hour, it has God who was carrying me through.
    My life verse is Romans 8:28," And we know that in ALL things God works for the good of those who love Him and who are called according to His purpose." It is not always our place to know the WHY in the trials and hardships of life. But we have a great promise that God will work it for GOOD. I have cling to this verse many times when I felt that my whole world was falling apart. Step by step and day by day God has renewed my strength and healed my broken heart. I know that He can and will do the same for you, Kate. May that verse give you comfort and strength today.
    In His Love,
    Debbie (a mom of three from Ontario, Canada)

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  22. Kate,
    I was thinking about your blog this morning as I was driving. I haven't walked in your shoes so I can't imagine how you feel. I do have 2 children that I love more than anything, so we share that in common.
    I was wondering why God bestows certain challenges/situations on certain people and my conclusion is that He has chosen you, Kate, specifically for this job. He knows that you, above anyone else, is best equipped to guide, love, support, and be there for your family. You have done it so far like a warrior, and I know that it must be so painful and difficult at times. But just know that somehow, this is all part of a great plan, and you're exactly where He needs you to be, carrying out His will.
    May God continue to bless you in big and small ways. I will continue to keep you and your family in my prayers.

    Antoinette (your cyber friend that you've never met :)

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  23. Thank you Kate for allowing your blog to lay yourself bare before all who read your words. You have no idea how much you help others to have more faith and courage to meet their (our) days. I know you didn't set out to be the great encourager, but that has been something wonderful. We try to understand your place in life at this time because we care. We hope and pray for better times for you and your family. Try to avoid guilt feelings as you sink sometimes. Grieve, and like the phoenix, rise again to face whatever you must. How wonderful that you have such a loving and involved husband to help you. How marvelous that you have little Jack and Miss Ella to raise your spirits and assist with Lucy's good and bad times. And how wonderful and how marvelous is your Savior's love for you (to paraphrase an old hymn).

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  24. First off big ((hugs)). You are an amazing person and mom, and don't forget it for a second! My son is the only one in the world with his form of a VERY rare genetic metabolic disorder. When he was dxed it took me a year to go through the entire 'grieving process.' I was so mad at everything, people with ''normal" kids. I used to sit up at night and try to figure out how I would leave my house if someone broke in...it was really, really hard. Allow yourself the cries, pity, etc it helps. You are stronger than you know. I had an amazing friend tell me one day, "People don't cry because they are weak, but because they have been strong for too long." I still take that to heart when my son is hospitalized and having trouble.

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  25. Kate, I am in the UK and have been reading your blog and praying for lucy and your family for a long time now.
    Today I came across the following just before I read your blog and i thought it was good so I've copied it here for you. xxx
    Welcome to Holland

    I am often asked to describe the experience of raising a child with a disability (cancer) to try to help people who have not shared that unique experience to
    understand it, to imagine how it would feel. It's like this...
    When you are going to have a baby, it's like planning a fabulous trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, Michelangelo's David, the gondolas in Venice. You may learn some handy
    phrases in Italian. It's all very exciting.
    After months of eager anticipation, the day finally arrives. You pack your
    bags and off you go. Several hours later, the plane lands. The flight
    attendant comes in and says, "Welcome to Holland."
    "Holland?!?" you say, "What do you mean Holland? I signed up for Italy! I'm
    supposed to be in Italy. All my life I've dreamed of going to Italy."
    But there's been a change in the flight plan. They've landed in Holland and
    there you must stay. The important thing is that they haven't taken you to a
    horrible, disgusting, filthy place, full of pestilence, famine and disease.
    It's just a different place.
    So you must go out and buy new guidebooks. And you must learn a whole new
    language. And you will meet a whole new group of people you would have never
    met.
    It's just a different place. It's slower paced than Italy, less flashy than
    Italy. But after you've been there for a while and catch your breath, you
    look around and notice that Holland has windmills, Holland has tulips, Holland
    even has Rembrandts.
    But everyone you know is busy coming and going from Italy, and they're all
    bragging about what a wonderful time they had there. And for the rest of your
    life, you will say, "Yes, that's where I was supposed to go. That's what I had
    planned."
    The pain of that will never, ever, ever go away, because the loss of that
    dream is a very significant loss. But if you spend your life mourning the fact
    that you didn't get to Italy, you may never be free to enjoy the very special,
    the very lovely things about Holland.

    ****Author Unknown****

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  26. Thank You, Thank You, Thank You Kate.....your blog has changed my life and is a constant reminder of the important things in life. I just wanted you to hear that :) I absolutely LOVE your family.....

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  27. I thought of Lucy and what a fighter she is when I saw this!

    http://www.youtube.com/watch?v=ihGCj5mfCk8&feature=player_embedded

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