"Promise dad! Adina did it."
Oliver during music therapy. He loves to have his hand on the guitar and feel the vibration. As soon as the guitar is gone he starts feeling around for it.
Oliver continues to rest comfortably today. He wakes up a little bit but is really tired from what I hope is recovery from pneumonia and bacterial infection. Hospice seems sure that it is all related to end of life but I am going to cheer for team Oli and not give up. I obviously see the signs that he is tired and his heart beat has been changing from minute to minute. I will listen and hear irregularity and ten minutes later another nurse will hear it back to regular and vice-versa. From shift to shift it will be weak then strong. He is a constantly changing little man and he always has been. John and I are not ready to fully accept what the hospice team feels is coming. We can read reactions from others and know when they are feeling like we are just in complete denial. Maybe we are, but we are mommy and daddy. Think about your kids and then think about how you might feel when someone says you need to have a plan because it looks like he is getting too tired to go on. John and I just can't quit yet. We are supposed to talk about what we are going to look for as Oliver's sign that he is just too tired. The thing about Oliver is that from day to day he has never ever been consistent or followed the guide book for seizures, sleep, special needs, whatever guide that may be. He is consistently inconsistent. He is not going to follow a guide for death either and we don't want him to. He has always been a mystery man, most of his doctors would tell you the same. So we are going to give Oli every chance especially when he continues to remain comfortable. We were able to lower the rate on the vent today and hope to wean him off and get him breathing on his own.
So even if you agree with hospice and feel that we need to accept what seems to be coming, we would love for you to all share our hope that team Oli will fight through this. At least pretend around us. Oli is one tough kiddo and I know I will never possess even a fraction of his strength.
2 comments:
We think of all of you constantly . . . and pray. That seems to be the only thing we can do. We love you. We respect your strength and your decisions made in love. We also rejoice in the delight of another Baby Klawiter! Bless you, Taryn and John. You obviously know the best way to deal with stress!
Hugs and kisses from Tom and Marsha.
Dear Klaws, I am beyond amazed that you have never lost faith nor hope :) Even though life is tough abd takes a lot out of you, you still get to enjoy all the precious moments and joys every child of yours brings into your day- I love it!! Cora's face when dumping out the bag is hilarious! And how precious is little Oli- putting his hand on the guitar to feel and listen to the music... I am sure these moments make up for all the downs along the road <3
Congratulations on the baby news too!! I am very happy for you, though I know pregnancies are very hard on Taryn. So here's to hoping this one will be easier and Mom and baby will be just fine! I certainly adore that you guys are still able to keep up a family life- we all can only learn from you <3
Please know that we think of you every day and sending love, strength and support your way! Oli is such a little trooper, I am amazed with what he is capable of. We all know that you'll never give up hope on him (neither do we) and that everything you do is done with love. Oli knows that too, that's why he is giving you all these smiles. You are his parents, you know best. You are able to feel things that others don't because you are his parents <3 Keep trusting yourself and Oli, and you'll know what to do.
Love, the May's.
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