Tuesday, September 25, 2012

90 days

90 days. That's really all it took for MLD to take nearly every ability from our son. 3 months. That's it.

At the end of June Oliver could walk, talk, swallow, sit up, control his legs, control his arms and fingers, roll over, pull himself up, control his head, blow kisses, giggle, play with toys, tell us he loved us...

Now he cannot do a single one of those things. His retained skills include his ability to smile (thank God), he can still hear, and he can still see, but we're currently witnessing him lose his sight. To say it's been painful to watch him go through all of this would be an understatement of incredible proportions. It has been torture, that is really the only way to describe it.

His sight is starting to become affected, and we're seeing his eyes do very strange things. Darting back and forth, rolling back, pupils being either very dilated or not at all, regardless of light. He doesn't track you if you walk across the room or even move back and forth right in front of him. He doesn't track toys, he doesn't always blink when things are near his face and he probably should. He can't focus on things very far away and is starting to struggle with close up. I'll be holding him and he'll be looking away and I'll say "Hi baby, I love you, look at your Mama." And his eyes won't budge. I cry just thinking about it.

We don't know to what extent he can actually see, because he can't tell us and there is really no way to gauge. I just know that I don't want his whole world to go dark, since day one of his diagnosis it's been my biggest fear. I would give up my ability to see for the rest of my life if he could just retain his ability to see for his unfairly shortened life. How evil is this disease? Isn't it bad enough that it's taken away his ability to move, talk and eat? But his sight? It seems the cruelest of all. To not be able to see the faces of his Mommy and Daddy as we hold and comfort him? To not be able to see all the people and other things that he loves like Elmo, lions, dogs and his Daddy's silly dancing? It makes me sick to think about him becoming blind and being scared. Nothing is worse than him being scared. I feel physical pain at the thought. I feel helpless.

Scared, needing his Mommy and Daddy, trapped in a world of darkness, struggling to breathe, no idea what is happening to him. Sick. This disease is sick. And it all happened so fast.

Here are some pictures of Oliver from June...

And here are some pictures from Oliver in September


  1. I'm hesitant to comment because there are no words that could ease your pain or fear. But what if in my silence, you feel even more alone? There are hundreds of others like me; mothers, fathers who silently follow but pray loudly to their God for you and your family. Thank you for your post today. When I close my eyes it is dark, but I can still see your son's beautiful smile. You are not alone. Oliver is not alone.

  2. I can only imagine how hard this must be for all of you. You and Oliver were dealt a less than ideal hand, and for that I am truly sorry.

    Despite this, I've seen many of the things that you've done for your son. You have kept a smile on his face, and that is the single most important thing you could have done with your time.

    I know his sight is deteriorating , but hopefully your warm and loving embrace will help soothe him during this rough time. Despite the unfortunate set of circumstances, Oliver was very lucky to have such a loving set of parents. I know you will continue to do everything you can for your son, and as long as you are there for him, Oliver will be as comfortable and relaxed as he can be.

  3. Katie and Chris,

    Reading this post this morning brought such tears to my eyes and heart. I can not even begin to imagine your daily struggles or the pain you are going thru as this happens. Know only that there are so many who are praying for you and Oliver thru such a difficult scary time.
    Thinking of you guys always,
    Melissa and Tyson W.

  4. My heart breaks for you and I can not even think of words that can express how sorry I am for you and your family.

  5. Kate and Chris,
    The tears are pouring down my face as I read your post. As the above posts have stated, there truly are no words to comfort you and your husband. If there were, I would pour them out here. You might not feel it, but through your blog it shows you as an extraordinary woman, wife, and mother. Just love your baby as hard as you can, for as long as you can. Oliver knows he is loved fiercely and hopefully that can bring you some comfort these days. Know that this whole town is supporting your family and praying for you all.

  6. You don't know me and I don't know you. But I know what it is like to be a mother & to love yor children with every fiber of your being. I cannot imagine the pain and heartache you are all enduring. This disease and the sorrow it is causing is cruel and unfair. I will contieu to pray for Oliver and for the two of you, as his parents. I know it won't give much solace now, but please know that I will cherish each and every day with my children a little more from reading about the painful journey you are taking with your son. The blessings we are given must never be taken for granted. Through Oliver, many people will learn this. God bless you all.

  7. How quickly we take for granted the little things we do each day. Sight being one of them. I do think children, especially small ones are very very smart. I think even though you think Ollie doesn't understand, I think he does. Children take things in such stride and in the long run, care more about what you are feeling then what they are. Acceptance is something they just naturally are able to do. We as parents fight everyday to change the course of events for our children. I think children just naturally follow the path that they were intended to follow. Its not fair since Ollie is a beautiful beacon of light and sometimes the brightest ones burn out the fastest. I don't think Ollie knows fear anymore. I think he has proved that lately with his hospital visits. He accepts them and tries to give whatever comfort he can to you. First with his small words, then as that left, his blowing kisses, then his giggles and now his smiles. Whenever he closes his eyes he sees him Mommy and Daddy and that will never go away. Even now as his sight goes, I think that is all he ever sees and hears in his mind. Perhaps this is why this disease only usully happens to children. As an adult I don't think we would be able to carry on as far as Ollie has in these past months. Just keep telling Ollie that you and Chris will make it through this. I think that is all he cares about. And you will make it through this Kaite. I suppose that is the hardest part of all, knowing that you will when all you want to do is swap places with Ollie. Don't let this disease take you both. Ollie wouldn't want that. There are so many people that love to see you smile and even though you are sad remember that laughter doesn't make you forget the sorrow you are feeling, it just dulls the sharp edge of it and allows you to slowly heal. Many smiles coming your way my friend!! Love always! Nicole

  8. My heart goes out to you all during this time. I am so sorry about how this disease is visibly taking Oliver from you and from life. It is such a sad and helpless thing to witness and for him to live through. I can't imagine your anguish having three older children of my own. I have read your blogs, seen your photos and hear your pain, empathize and think of and pray for you all often. I pray that the Lord will give you all the strength, the love, the perseverance, the hope and the joy during this time with Oliver even amidst the sorrow and struggles and that you will cleave together. I also have been praying for God's gift of healing as it is needed. There are so many accounts of divine healing in God's word and we know that "...with God nothing shall be impossible." Luke 1:37 (KJV) Please know that you are not alone...even though we in the school and community are not always physically with you, we are all with you in spirit praying for you, caring about you and loving you. Most importantly, I want you to know that the Lord loves you and cares about you all very much as well. He is close to the brokenhearted, has suffered Himself and is with you and carrying you and Oliver through this time. XXXXXOOO

  9. As with many others, I cannot fathom what you and Chris are going through it is truly a parent's worst nightmare. Watching your child battling this terrible disease and unable to do anything to stop it. While you cannot stop the disease you and Chris are doing everything you can to make Oliver as comfortable as possible. Oliver may not be able to see you but he can feel you, he feels your love in all you and Chris do for him. He can feel your arms wrapped around him and know that he is loved. We pray for you, Chris and Oliver.