Saturday, June 8, 2013

Close call

I don't have the emotional energy to write a long post but I thought a quick update was needed. A few days ago Ollie started having major seizures again, despite the fact that he's on 3 different anti seizure medications. One episode was so intense that he completely stopped breathing. He almost died, we starred down at his sweet pale face, absolutely helpless and waited for him, begged him, to take a breath, he just laid there lifeless for nearly a minute. Until out of nowhere, something in his brain finally decided "No, I'm not ready yet, I'm going to keep on fighting" and he started breathing again.

His hospice team suggested we start discussing final arrangements for him, because although we could very well have years and months to love and hold him, we could also lose him at any moment. You just never know with MLD. Late infantile MLD takes children as young as 2.5 years old and as old as 9, the average is 4.8years old. Ollie's MLD is among the faster progressing mutations so we truly need to enjoy every minute we have with him.

But how do we plan final arrangements for our 3 year old son? Our sweet baby boy? How do we sit down and discuss the unthinkable? He just joined us in this world a few short years ago, how unfair that his journey should end so soon. How do we talk about him being in a cemetery as we rock him to sleep in our arms? No parent should ever, ever, have to do this. We're hurting right now, hearts, souls and bodies. Our hearts break a little more with each passing day.


6 comments:

  1. Know that so many people.. family, friends, and strangers (like me) think about the 3 of you every day and are awed by your strength and love. You don't realize this but you are all inspire each of us to be better parents,relatives, friends, and spouses. You show us daily that there is no guarantee for any of us and at the end of the day all we should be concerned with is loving the people in our lives as hard as we can, and being the best people, to all those we encounter, in our every day lives. You both are amazing people and I hope you feel the love and prayers that so many are sending you every day. I have tears in my eyes with each post that you send and know that Ollie knows how much he is loved, again, you both are incredible people.... My prayers have been with you for months know, and today I will pray a little bit harder......

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  2. Your strength and courage is amazing. Our hearts break with you every day. I can not even begin to imagine what you are going through, but all 3 of you are in my prayers.

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  3. I too, am amazed by your strength and courage every day. You don't know me, and I only know you through your posts. But you have touched us all, and we pray every day for your little beautiful Ollie. I don't know why this has happened, or why God allows such suffering, but there must be a reason. Have faith. Stay the course. You are an inspiration, and you will get through this.- With many prayers, and much love!!

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    1. My heart is just breaking for you and your family. I wish that I could just make this all go away for you. Your little boy is such a warrior.

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    2. hang in there,you will find the strength to do what you need do! God Bless you all and know that so many of us are there with u every step of the way and praying for you!!!! Thank u for sharing

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  4. I feel so bad that Oliver went thru that but thank God he started to breathe again!! Your story has really touched my heart and I think about Oliver all the time. I am still interested in taking care of him for you in August and if you have found someone else,(go for whoever your heart tells you too),I would still love to meet him. I told my 13 yr old daughter Janine about Oliver and showed her his pictures and she wants to meet him too. Janine loves kids and is very creative,and if you ever wanted some company for Oliver,I could always come by and even with Janine and she can draw with him and play with him too. I pray for Oliver all the time since hearing about him and I will keep doing so. God bless you all.

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