As I sit here at the bottom of Jonas' bed and listen to him try and sleep, I cry. He is not doing so good. Twice today he has reached a low of 14 on his oxygen sats while with fear in his eyes because he can't breathe. I hate that. I hate SMA.
It's potentially just a stupid common cold, but it wipes him out. His nose can't just run down his face like any other little 3 year old. The bi-pap pushes it down his throat and either out of his mouth or into his lungs. Which makes breathing really uncomfortable and really miserable. I cry some more.
Jonas is tired. His sweet perfect little body is getting tired. Jonas' spirit is a little less bright. I've been completely spoiled having him this long and I've forgotten that. I'm afraid. But I can't be selfish and keep him when he might be ready to go. I don't trust myself to know when though. This sickness doesn't have to be Jonas' time, but is it? My reality is all to close and all to real.
I realize that I had somewhat let go of the fear of Jonas dying and it's hard accepting that again. I've been bracing myself for the worst and digging my heels in all along the way. I don't know if I can stop.
This whole Make A Wish trip was quickly put together and that is because we know time is limited. Remember the picture from yesterdays post..the wishing coin. I had many wishes in my heart at that time. I wished Jonas didn't have SMA. I also wished that Jonas would always be happy and he's not right now.
Tuesday, November 16, 2010
Honesty, please don't judge
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16 comments:
Thank you for your perseverance, and thank goodness for Jonas, and each of you. We've been touched by each post, picture, and word we've heard about your family. Thank you for being willing to share such difficult moments as well as the good moments! I hope you and Jonas can have some comfort and Peace today.
We love you, our prayers are with you, darling Jonas, beautiful Maggie and Whit.
You, Jonas and your beautiful family are in my prayers tonight.
You are brave and valiant just like Jonas. You are just the mother he needs. I'm so sorry for your heartache and I join my prayers with those of many others that you can feel peace and find wisdom in this agonizing journey.
I sit here crying right along with you Lindsey. And I am so deeply sorry that your wonderful family and your sweet Jonas have to be on this journey. I am so sorry he is getting tired. It isn't fair and it isn't okay. And it breaks my heart. You and Whit are amazing parents. Your love and devotion to your beautiful little boy radiates. I hope you can feel enveloped in all that love right now. Thinking of you and aching right along with you and hoping you have a magical day at Disneyland tomorrow to help ease your aching for a moment.
Crying with you and praying for you.
All our love.
Hugs and prayers for you...I wish I knew what to say to help. :(
Praying for your family as tears stream down my face. I never want any mother to experience loss as I have.
I wish there was something I could say or do to make it all better. There are no words when your vibrant child has a body that is failing them. Praying..
Ashley
Coleman Family,
My daughter goes to Bennion Elementary. She did not have the pleasure to have you has her teacher but she talked so much about you. Then I found your blog and have been following it for a while now. My heart aches for what you are going through. Your family is so strong and so happy. Please know you are in our hearts and prayers.
Lacey Warren
Prayers for my sweet Jonas, and his wonderful parents!
Nobody is judging you-if anything, we are all amazed and inspired by you. You have been dealt an unfair hand and you are holding it with grace and courage beyond your years. I am praying for you and your sweet family-I have been deeply touched by your posts. I don't think it's possible for a parent to be ready to say goodbye to their child-thank goodness you don't have to do this alone-I pray that you will be blessed with strength, comfort, and hope. You are in our prayers.
Andrea (Enderton) Griggs
Ashley shared your blog and asked us to pray. Tears are falling from my eyes and I'm praying.
Lindsey you and Whit are truly inspirational and I am grateful that you shared your feelings. I hope that no matter what happens in the future you guys will feel peace and love and know that you have been blessings in many peoples lives, especially your children's. We love you!!
I cried while reading your post and I wrote something very similar on our blog yesterday about Nicholas being sick. I am so sorry. SMA is a terrible, awful disease. Sending lots of love to you and your family from afar.
i too am crying and praying right along with you. i am so sorry that you guys are going through this, and honestly that you have to go through it at all. i am always here for you and love you very very much!!!!
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