Sunday, January 20, 2013

Failing

I woke up this morning worrying about what types of appetizers to make for the guys coming over to watch playoff football.

That quickly changed when Oliver started having another episode of extreme pain.The 3rd episode in 7 days. It start off with unprovoked fussiness, just a little whining, so we changed his position, we tried to distract him with toys, we hugged him, cuddled him, kissed him, rocked him, patted his back, rubbed his hands and feet, sang silly songs to him, massaged his tight muscles, we gave his initial doses of diazepam and morphine. Nothing helped. He had another seizure and it only got worse. His arms started spasming and tightening towards his body. The screaming became so loud, his pain must have been unbearable. To hear our child in such pain, words can't describe. They can't. It's like a type of torture.

I held him tightly in my arms, I rocked and kissed him, my own tears fell onto soft baby hair. I wanted so badly to take away him pain, I wanted so badly for him to be at peace. I am so sorry Oliver. I'm failing you. It's become my only job as your mother to protect you from pain and fear and to keep you comfortable and happy. That's all I've ever asked for. I haven't asked for a cure, that's years or decades away. I haven't asked for a miracle, your DNA isn't going to suddenly create the enzyme you are missing. I haven't asked for anything but your comfort and I'm failing at that and I am so so sorry.

Dose 2, dose 3, dose 4. Why is nothing working? Why is he still suffering? Now he's sitting with Daddy and has an oxygen tube up is little nose. After hours now, and tons of medicine, he's starting to calm down, but his arms are still spasming. This has been a terrible week.





8 comments:

  1. My tears run down my cheeks for yours and Olivers' pain both different yet the same because someones heart is breaking for your pain too.

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  2. Katie - please don't feel that you are failing... You are doing everything in your power to help Oliver - You and Chris continue to show such strength of character and courage - you are an inspiration to all of us in this community who pray for Ollie every day...

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  3. tears for the three of you, there aren't any words, just tears......

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  4. I've been following your story since the beginning. The word failing shouldn't even be in your vocabulary. You are showing Oliver love, strength and courage. You and your husband are absolutely amazing parents. I pray each and every day for your family.

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  5. Katie, please don't feel you are failing him You and Chris are the best parents he could possibly have - the most devoted, the most loving, caring, thoughtful - all those adjectives that describe you. No matter how much love you have, no matter what you do, there are still many things that are out of your control. It in no way indicates that you are a failure. The best and really only thing is to keep doing whatever you can to ease little Ollie's pain and make him as comfortable as you can. We are continuing to pray for you all.

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  6. You are not a failure. Your child is very lucky to have you. The both of you are shining examples of what parents should be.

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  7. Praying for you all. Praying for strength and comfort. Xoxo

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  8. Failing is not even trying! You and Chris have done and will continue to do everything within your power to make Ollie as happy and as comfortable as possible. I pray for all of you.

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