Brody is resting peacefully right now under heavy sedation. I've hardly seen his eyes today. It seems that when he is awake at all he is storming. And there is still some question as to whether these storms are as painful to him as they appear. But at least, for a moment, he appears to finally be comfortable.
I met briefly with a member of the hospital's palliative care team who call themselves the Rainbow Kids. Its a group of 5 people who are here to "offer comfort, advice, and support to families, wherever the path may lead". They said they are not affiliated with any unit of the hospital. They are, in part, here to help bridge the communications gap between families and caregivers. And to see that our wishes for our child's care are honored.
I miss my family being whole. I hate that I haven't seen Kaybri's precious face for nearly two weeks. Its so hard and unfair. I always try to put on a happy face and remain as strong and steady as possible but I am breaking down. I continue to pray often. And from there, what else can I do?
2 years ago
4 comments:
We're glad someone is there to help you although we wish it were us. This is a difficult time and it certainly isn't fair. Just remember, that as strong as you are, it's still OK to cry sometimes. And we are crying with you. Please hug Brody for us as we hug Kaybri for you.
I admire your strength. I can't imagine the pressure you may have felt when they came to you with the option of giving up! I would have wanted to die myself. You are his mother and you know whats best! And crying sometimes is the only thing that is going to comfert you sometimes. I agree it is ok to cry! we will pray for brody, kaybri, you and your husband.
Amie and Josh,
Greg was just in and told us about this sight. What an awesome thing!! Please know that you are in our families prayers. What a blessing it is to have that wonderful gift. We cant imagine having to go through a trial like this without it. You both are such examples to us. Thank you for reminding us of what is the most important in life. I know there are times you feel as though you cant do it anymore. Please remember those that you are an inspiration too. We cant wait to have you in the ward and help you love on those kids.
Love the Okerlunds
I am also glad that their is someone their to help you. I wish that I could come and see you and take you to lunch? Please just remember that tears are SO okay! They get us through the hard times!! LOL :)
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