There are just no words

25 Mar

Sometimes there are just no words to describe how I am feeling. All of my emotions are jumbled – I feel immense exhaustion, fear, and sadness. I continue my focus on the good that we have, because no matter how this ugly disease is and how it affects us I don’t know how I could live any other way…without my little girl.

A lot has happened since my last post, two more beautiful girls have been lost to Krabbe, Pheobe and Naéva. We were close to one of these little angels and often referred to her as Lauren’s best friend and soul sister. Naéva left this earth on February 23rd 2013 and is now watching us from above. She is free from the agonizing pain of the illness that plagues our baby girl, still she is missed so much.

I can’t even try to find words to describe how this precious girl’s passing has affected me. Although she suffered from the same disease as Lauren her passing was so sudden, too sudden! She became sick and left us within less than a week. Another reminder that time is too short and so precious.

Since Lauren’s diagnosis I can’t remember having felt any form of real excitement – everything always seemed fake. I would smile and laugh at jokes but it was never fully sincere. Meeting Naéva was like allowing rays of sunshine in, our daughter had a best friend. We made wonderful plans for the girls and found peace and love in every moment that the girls spent together. In a way losing Naéva felt like I had lost a piece of myself, my little Lauren had lost a sister.

Soon after Naéva’s passing Lauren came down with her first cold, well actually it was the Parainfluenza virus. We had to use a suction machine to help her through it as she couldn’t handle all the yuck that comes along with a virus on her own. For days Lauren would awake with fevers, she was very weak and wasn’t responding in the same manner that she normally did. One day I watched her lying on her bath chair, her eyes barely open and her body limp, she reminded me of a rag doll. Her perfect little body looked so weak…my heart sunk. Until this moment I don’t think I realized just how strong my baby girl actually was, because seeing her this way posed such a stark difference.

As her virus continued I could feel fear creeping in – I kept trying to brush it away as a small voice in the back of my mind kept asking “Could we be near the end too, are we ready for this?”. This little voice was my enemy, it was cruel and it made me face the tragedy that is waiting for us at the end of this disease. I wouldn’t listen, Lauren was still strong and I continued to help her fight this cold, no more negative thoughts. Steve and I lived on adrenaline for two weeks, and finally the storm passed and it passed as easily as it could. The virus ran its course without ever becoming critical, Lauren is now free from infection, we were blessed.

For the first few days following her illness, we were able to breathe easy. We were even awarded with some cute Lauren smiles, a miracle that she can still express happiness!

For the past four days, Lauren has begun crying a lot more. She is uncomfortable and stiff, her usual medication doesn’t seem to be working.

Tonight I posted this as my status on Facebook

Feeling worn and tired, and so sorry for my little one. Lauren has been crying almost all day and I hate not knowing how to console her. This disease wears on you in the cruelest of ways, once one hurdle is passed another arrives before you. We’re not sure if she teething or just irritable, and worst of all she can’t tell us. I am thankful for having her in my life, I pray that they find a way to kill this ugly disease.

I’m not sure why but re-reading the post made me feel worse. I feel terrible that I’m too tired stay upbeat, horrible that I don’t feel strong. I want a break but at the same time I don’t want to waste a moment apart from Lauren. I just want to hold her in peace, to hug her tight, to be able to comfort her. I want to be the warmth that makes her feel better. When everything I try fails, when holding her makes her cry, I feel like a failure.

I know that I shouldn’t feel this way and I am able to rationalize why – still I can’t help it.

I’m so sorry to end this post on such a low note, but to make up for it I will share some recent and cute pictures of our little girl.

Did you know that we offer daily updates and pictures of Lauren on Facebook? You can see her page by clicking here: https://www.facebook.com/Lifewithlol

Lauren was the Irish Queen in our house on St Patricks Day

Lauren was the Irish Queen in our house on St Patrick’s Day

St. Patricks Day Family picture

St. Patrick’s Day Family picture

Surprise! Naéva's parents joined in too :)

Surprise! Naéva’s parents joined in too 🙂

One of my most favourite pictures - Lauren smiling in the morning, this photo was taken only 4 days ago!

One of my most favourite pictures – Lauren smiling at mommy and daddy in the morning, this photo was taken only 4 days ago!

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18 Responses to “There are just no words”

  1. Kirsten March 25, 2013 at 10:46 AM #

    Oh sweetie. I hear you. I really do! We too are exhausted and devastated.
    XOXOXO Kirsten

  2. Josee March 25, 2013 at 10:51 AM #

    Amanda!!! Thank for this post.
    You know, you are strong, but the disease is so hard to deal with, something we are just to tired. Even in a good day we had so much stress. Nothing in our day are normal with a krabbe baby.
    No matter what, we are with you and we understand, that is the best part. We know…
    Naéva is there with us and she’s there with Lauren. For ever and always
    Xxxx

    • Emilie March 25, 2013 at 12:13 PM #

      Amanda, tu t’en fais pas. Tu as le droit d’être fatiguée et de l’exprimer. Ça ne peut que te faire du bien. Une chose est certaine: You have a BEAUTIFUL baby girl. Et, elle est chaceuse de t’avoir dans sa vie, comme toi dans la sienne.

  3. Emily March 25, 2013 at 12:05 PM #

    I’m sorry to hear that Lauren was sick with the flu, but I’m glad it eventually went away. Also, I love your St. Patrick’s Day pictures–it’s beginning to look a lot like Bishop’s. 😉

  4. Michelle March 25, 2013 at 12:16 PM #

    Excellent blog! I am in tears. I can’t imagine how hard all of this is on you and your husband. You are so brave and strong, Lauren is so lucky to have the both of you as parents. We think of you guys all the time and constantly wish for a cure for your beautiful baby girl. Xxxxooooo
    Michelle & Evelyn

  5. Duanelle Hook March 25, 2013 at 12:42 PM #

    Lauren is a beautiful and sweet little girl. She is lucky to have you and Steve as parents. Cherish every moment. And celebrate every day. Please give her a kiss for me. Love to all and God bless.

  6. Albina Godin Valcourt March 25, 2013 at 12:56 PM #

    I read your post and my heart ache for you.I know you are going through a very tough time.Nothing is as tough as seeing your little one suffer.We will continue to pray that God continue to give you strength and Faith.Dont feel guilty that you have lows and feel so tired,you are only human and you are allowed to have these feelings.Gods understand that.We will pray that the angels will be around your little one at all times.God will take care of you all.I love your little one and I have not met her.I too have lost a grand daughter.It was sudden.Her heart give out on her,we didn’t know she had this problem It was a Valve.She passed away in her sleep.She was 23and had a 8 month old son.i will never get over her being gone but through our Faith we learn to live with it.God Bless you all.

  7. Tina Chasse Plate March 25, 2013 at 1:05 PM #

    Amanda & Steve, please know that I think of you often and read your updates about Lauren on FB. Know that every Sunday when I sing at Mass, I pray for you. God bless you!

  8. Mir March 25, 2013 at 1:20 PM #

    never ever feel like a failure! Emotions are valid and they change time to time, we cannot be upbeat 100% of the time. Sometimes writing them all out will make you feel better so i hope you are 🙂

  9. Kathy Scott March 25, 2013 at 1:27 PM #

    Amanda and Steven,
    You have been blessed with beautiful little Lauren for a reason. I can’t begin to understand what your both going through but hold on and keep strong.
    I pray every time I see Lauren on facebook and hope that they will find something to end this cruel disease..
    Think of you all every day when I see your posts. Thanks for sharing with us and making us appreciate each day we have..
    Lots of Love and God Bless
    Kathy

  10. Julie March 25, 2013 at 5:12 PM #

    You’re doing a terrific job. You’re a great mother. But what you’re just going through is emotionally and physically exhausting. And you’ve been going through it for a long time now. You’re allowed to be tired. And sad. This is hard! You’re a wonderful mother and you want every moment to be perfect, to mean something. You think that Lauren deserves to have a perfect mommy that can take all her booboos away. If only it were so easy… But you’re just going to burn yourself out if you pile on this pressure on yourself on top of everything else. And Lauren needs you too much for this to happen.

    Lauren loves you. Just the way you are.

  11. dulce March 25, 2013 at 7:46 PM #

    Amanda never,never feel like a failure..you are the most wonderful mother that exists..It is ok to feel low and tired some days it is not easy… sending you all my love.

  12. Shannon March 25, 2013 at 7:52 PM #

    You are both an inspiration! I am so sorry that your little peach has had such a dreadful couple of weeks. i wish you comfort , sleep and a few extra Lauren smiles! Much love, Shannon

  13. nappyheadchronicles March 26, 2013 at 12:22 PM #

    i can’t pretend to know what you and steven and little lauren have been through, but i can try to imagine the energy it takes to keep going every day and to make lauren’s time with you the best possible time you can. you are the strongest people i have ever known, even in your weakest moments.

    though we haven’t been in touch lately, know that you are all in my thoughts and prayers.

    –Noni

  14. ann March 26, 2013 at 4:09 PM #

    Amanda, once again, your ability to print the word fueled with such expression of truth has rendered me with bleary teary eyes as I dialogue with you. The light you felt with Naeva as you witnessed Lauren’s joy in her friend is still there. The light is always there; it only requires the choice of the will, such as, when we stop to smell the roses. You had been so busy, caring, worrying, learning about krabbe and you hadn’t stepped down from the treadmill till you saw and felt the peace with Lauren and her friend, Naeva and her dear parents to whom I offer my deepest condolences and promise to always keep Naeva and both of them in my prayers.. You and Stephen could simply be yourselves with this family as you all completely understood each other. Amanda, if you can have 2 beautiful little girls in one room with krabbe disease and have the power to see the light, then you know the light is always there , depending on how relaxed you are you can see it.. Your faith and Stephen’s runs deep. As a great saint once said: Pray to God, then do the work. Visualize clearly exactly what you’re asking for and keep working towards that and God will .be there with you because you asked for help. He will be there helping you every step of the way. I think it was St. Jude said: when you find yourself stuck, first, do what’s necessary, then, do what’s possible and before you know it, you’ve accomplished the impossible. Amanda, you and Stephen are alway accomplishing the impossible, that’s why you’re so drained. Lauren is so happy and gorgeous in her green Irish dress and what a loving, caring family she has in her kingdom. Love, Ann .

    • ann March 26, 2013 at 5:09 PM #

      oops, Steven, if I ‘ll remember V for victory, then I’ll spell your name right.. All those victories you both create and experience every day, that’s an easy way for me to get it right. Both of you get so much right.

  15. TBibby March 26, 2013 at 7:39 PM #

    One word that will never be equated with you, dear, sweet, kind, loving, gentle, determined Amanda, is “failure”. While I have not met you, Steve, or Lauren, I have learned more from the three of you about the strength of love than I have from anyone in my entire life. It is only natural that you will have days where you can’t pull yourself up. That is not cause to feel that you are weak, you darling girl, it means simply that you are human. And that you love your daughter and are so fiercely protective of her, and so devoted to making every moment of her precious life joyful. I am inspired by you, Amanda. You, Stephen and Lauren make me want to be the best person I can be, and not just now, but for always. When Lauren is crying, it hasn’t anything to do with what you are or are not doing. She knows that you are there, comforting and loving her. You are a natural mother, Amanda, and it is a natural mother who feels with her entire being the way that you do. I wish so much you could see in you what we all see – only goodness.

    I wish you peace and love. Please give Stephen a hug for me and ask him to hug you back for me, and a kiss on Lauren’s forehead. Franklin and I hold you all in our prayers and in our hopes every single day. You are never ever alone.

  16. ann morfitt March 26, 2013 at 9:17 PM #

    Yes, Lauren is queen of the kingdom surrounded by all those who love her and serve her well. God bless your family and friends above who share in your sorrow and joy. Such is the definition of a true friend.

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