Feeling a little run down

7 Jun

It’s 1 o’clock in the morning and after aimlessly searching through Netflix for some form of entertainment that just isn’t there,  I have decided to write an update while an old/new episode of Beverly Hills 90210 drones on in the background. It’s so hard to find anything of interest on TV lately (or anything else for that matter)

I guess I’m going through a bit of a mental rough patch. Everything just seems more difficult lately, I feel like we are in a constant battle to keep our daughter comfortable and cared for in the way that we feel is appropriate.

Lauren’s diagnosis threw our lives upside down, the first few months afterwards felt dark. It was winter, we stayed in a lot and we were mourning the eventual loss of our daughter. Come January, we were tired of feeling sorry for ourselves – we were going to live, and enjoy every last moment (no matter how painful) that was afforded to us. We started taking Lauren to physio, massage, osteopath and any other form of therapy that we thought might help ease her pain.

We weren’t looking for a miracle cure, we knew there wasn’t one. We acknowledged that Lauren was only here for a short visit but that she still deserved to live the life of a child (or an abstract version). Lauren deserved to experience the world, to feel the sensation of floating in water, to feel a warm breeze caress her toes, to have the sun warm her face, to see beautiful things and hear beautiful music as long as her body would allow it.

I still believe in this today, but am having a hard time in keeping my sadness at bay. Lauren still experiences moments of joy but its tough not to let the gravity of her disease overshadow these moments. Each loss is heart wrenching  – Lauren’s vision is almost gone, she can see lit up objects and shiny items but with every passing day I can see her remaining vision slipping away. She still smiles and laughs occasionally, but they a fewer a father in between than they used to be. I want to appreciate every single one she has left, but my heart is so heavy and I spend a lot of time fearing that each laugh or smile may be her last.

Krabbe disease is harsh and cruel, my daughter is dying and this disease will not let her go peacefully. It strips her senses and abilities, but she is so strong. She fights to laugh and smile even though this disease has shackled her.

What I find most difficult about our situation though is not the disease itself. Yes it’s horrible and hard, but what bothers me the most is how hard we have to work to care for her. Our local medical team will never see her through our eyes and understand that she still can experience joy, they don’t understand why we are opposed to sedating her. I am so tired and drained from trying to explain that we know that she is dying but that she can still enjoy life, she is still responsive. As her mommy and daddy we know when she is happy and we can see when she is sad. We know what medications she responds to the best and we challenge when something doesn’t make sense for her. Lately though, I just feel like these challenges are piling up.

I wish that I could just stop the outside noise sometimes and just love Lauren as much as I can without distraction.

Ahh enough of that! Here are some cute recent photos.

Thank you to everyone who continues to support us through our Journey with Lauren it is your help and encouragement that makes our days a little easier.

Lauren Lounging in her pretty Dress, she actually moved her arm into that position on her own.

Quality time with Daddy

Daddy got a turn in the pool with Lauren

A picture of mommy with baby – She was feeling left out 🙂


17 Responses to “Feeling a little run down”

  1. Kari June 7, 2012 at 1:09 AM #

    Follow your parental instincts. You know your child better than any doctor. Sometimes science and logic doesn’t always administer the best medicine. What you are doing and giving to Lauren can’t be replicated and isn’t more effective that a sedative. She is so beautiful and she has blessed the lives of so many — including those who have never met her. She has a mighty powerful effect and I can honestly say that she has left her mark with us. God Bless, Kari, Peter and Zoe Schneider.

  2. Kari June 7, 2012 at 1:13 AM #

    So Sorry. Meant to say . . . .and is more effective than a sedative.
    She knows your touch, your breath, your voice — she needs to feel that — she needs to feel the nurturing from you. That is life.

  3. Amy June 7, 2012 at 5:47 AM #

    Beautiful Baby…Strong mommy and daddy. Continuing to pray for your family.

  4. David M. Cape June 7, 2012 at 7:26 AM #

    Thanks for keeping us up to speed with Lauren’s life,..and with your challenges with it. We pray for you all. One other sensation she may wish to experience, if possible, is warm sand between her toes (if there is a beach near you), and the subsequent rinsing those toes off in a lake. Just a thought for summer.

    David & Christine Cape

  5. Katie June 7, 2012 at 8:07 AM #

    Amanda, I think you are the bravest and strongest woman that I have ever met. How lucky for Lauren to have a Mommy and Daddy who are so driven and committed to making sure her time here is as beautiful as possible.

  6. Carol Hume June 7, 2012 at 10:22 AM #

    Lauren is so lucky to have parents so in-tune with her needs and abilities. You can clearly see from the photos her responsiveness and awareness. Sometimes professionals seem to lack the ability to look outside their own ‘expertise’. I really admire your strength and courage and I am grateful to you for sharing your story and beautiful photos. Take care and keep in touch if there is anything I can do.

  7. Becky June 7, 2012 at 12:49 PM #

    You are doing exactly the right thing for her in every step you have taken along the way! Never doubt that!!!!! She is loved and well taken care of..like I said no stones unturned for her..you made sure of that!! I would be surprised if you didnt have those thoughts in the dark of night..your not superhuman!!!! Shes a happy girl..she totally moved her arms up the other nite when Linda was changing her diaper, was so exciting to see..shes having the very best of care and love! Chin up mommy…!!! ps…the dresses are adorbs..on her!! xo

  8. Francis June 7, 2012 at 1:45 PM #

    Amanda, you are doing great. You are dealing with a gap between your expectations and your reality. The reality is that Lauren can experience a wonderful quality of life. The challenge is that, that experience is changing every day. What she enjoyed today, she may not be able to experience next week. The frustration you feel is wanting to give her the best, and not knowing where the best is in the moment, and seeing the best diminish over time. You need to take time every day to be not just a good mother to Lauren, but to be good to yourself, and take time to be good to Stephen too. You are an amazing mother and what you are feeling is normal, natural and is a testament to your love of Lauren.

  9. Rachel June 7, 2012 at 5:57 PM #

    I’m so very, very proud of you both, Amanda and Steve. You are doing a great job with a terrible situation and I just know little Lauren is having the best possible life thanks to your love and care. I pray for you often and please know that I love Lauren even though I have never met her.

  10. ann morfitt June 8, 2012 at 5:55 PM #

    Happy 17th, Lauren! You certainly know what happiness is and that is so obvious in your humble, matter-of-fact smile and in your gorgeous penetratingly blue eyes. Never in my life, have I seen eyes with such warmth and love, nor have I ever seen eyes so physically beautiful!

    People who have a role in life, such as a medical one, get through their day following procedures, dealing with black and white, so they think, as there is so little that is black and white in life. There are some compassionate ones, e.g., Dr. Vincent Lam, who won the Giller Prize for his short story collection “Bloodletting……..”. This may be a read that will hold your attention. I met him 5 yrs ago when I broke my wrist. He gave his opinion, I asked questions. He answered them. I asked ‘what if’ questions about different options. Together, based on my lifestyle and personality, we came to an acceptable treatment that satisfied both of us. His listening to me was crucial to my healing as I felt so empowered because there was a revelation that there truly are no ‘definitive’ answers in the medical world with respect to certain conditions. This honesty and sense of respect for my intuition and my experience with my own body carried me to a place of peace as I truly was in a state of angst as I had never had a broken bone before or any kind of an injury, really. I saw him on the George Stroumboulopoulos show (11:30 p.m. CBC) 2 nights ago and he has written a new book about his grandfather. His grandfather had gambled away all his money and his children vowed never to be like him. Vincent laughs and says that’s why all the grandfather’s children were driven to succeed and that was the catalyst that drove the grandchildren as well. Looking at things from different angles and chuckling about the permanancy of the positive, Dr. Lam surmises, his grandfather was indeed successful in getting this message across to his children and grandchildren, not to gamble away the money. Vincent says that in medicine, as in all facets of life, thinking out of the box is crucial. What is known about healing krabbe is 0% and what is ‘not’ known about healing krabbe is l00%. So Amanda and Stephen, feel very comfortable and sure of yourself in dialoguing with Lauren’s medical doctors as you know your child and that is what puts your knowledge in the out-of-the-box department and so so relevant as it is the only knowledge to be had other than its diagnosis (and there are so many errors in that dept in the medical world too). Their angle is managing her physical pain so what can you take from that? You respect her as a person, as your daughter, as a loving warm individual and her spirit is stronger than her pain that is why you do not want her morphined into oblivion. Your goal is to care for her body with the goal of nurturing her heart. Lately, I came across a saying that there is only one person that you always need consult in life and you know you’re on the right track and that is God. Always ask him about Lauren because he is the God of love and this is the umbrella that all 3 of you live under. Love, Ann

  11. ann morfitt June 8, 2012 at 8:46 PM #

    p.s. palliative care, which is what Lauren is receiving should have equal compassion for the parent as for the child as there is no ambition concerned here to heal the body as may be the case for the marrow (umbilical cord) transplant patient. If palliative care is true to its name, then making the sick child comfortable is of the essence and what could be more comforting than to have a loving, relaxed parent with them. Never underestimate the power of love for making one feel good. A dr. listening to a wise parent in the situation where he really can provide no cure or improvement would be following the hypocratic oath by including a parent’s opinion in his prognosis.

  12. janet June 8, 2012 at 8:48 PM #

    We are in the weird period between Mother’s day and Father’s day. To have to face medical “dialogs” over the type and amount of sedation and other care for Lauren must be draining. You always have lots of love and prayers and support, we are here and we are listening. Some days what you really need is a hug hug and someone to listen.


  13. Nikki June 11, 2012 at 9:42 PM #

    I have followed your journey after a friend posted your blog on Facebook. I’m a family doctor and a mom. My baby was quite sick after birth and I spent a lot of time grappling with how hard to push in my advocacy for him. I don’t have any magic solutions – but just wanted to chime in and say that you know Lauren best, and you shouldn’t be afraid to say that as many times as necessary. Sending love and prayers to you and your family.

  14. Sabrina June 14, 2012 at 11:33 PM #

    Lauren was blessed with you and Steve as parents for a reason, one that all of us can clearly see and feel with every word that you write, picture you post, and emotion you convey. There actually are no words to describe the love and care that you provide for her, the comfort and protection you give her.

    My heart breaks into a million pieces over and over again, each day, thinking about what is happening to Lauren, and the agony that my dear Amanda and Steve are suffering, and will face. But the one thing that brings a smile to my heart is knowing that you are doing each and every single thing, big or small, so that she and you can enjoy and cherish each moment you have together. You know your daughter, you know better than anyone what it is that she needs to have those precious moments. Lauren’s heart will always be smiling because of you.

  15. dearsilas723 June 23, 2012 at 3:17 PM #

    I wanted to mention since I didn’t have the chance to. You should record her laugh and her heartbeat. You can get these put into a teddy bear at Build a Bear and hear them whenever you’d like.

    • lifewithlol June 23, 2012 at 3:26 PM #

      Those are great ideas, I just got a silver pendant with her fingerprint on it. I’ll always have her with me.

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