So, I am feeling an overwhelming sense that we have worn out our welcome in the PICU. I know that sounds strange, and please know it’s not from the nurses. Nurses truly have a nurturing gift. It comes from the docs, in not so many words, but since they all have their opinion which is that Noah has a progressive disease, they’ve done all they can. I also don’t get the sense that they respect our decision to have Noah undergo a tracheostomy. They can’t say that, but anyone who knows me, knows that I often know deeply about others’ hearts and intentions…
The statement the PICU attending made about anyone coming in was somewhat retracted…he came in and clarified with a cya statement about paper work and legal stuff. Understood. Regarding Noah having some acupuncture, the doc said he’d be okay with that even though he still has his opinion and as long as it didn’t hurt Noah…IRONY here, folks!!! They want a brain biopsy along with a muscle biopsy (even though they said those two things wouldn’t tell them anything they think they already know), but he’s concerned about acupuncture! Hello!? If they don’t think anything can help Noah, as long as we are desiring this therapy for Noah, what do they care? Anyway…
Today my gramma died in California. She was 92. She had had dementia for several years. But instead of telling you how she died, let me tell you how she lived…She lived tenderly. She ADORED her husband, my gramps that used to sing “BabyFace” and play “Flight of the Bumblebee” on his violin. She called him “Nicky”. When he died, I know part of her went with him…She loved her 2 children that lived and the many that died…she loved her 5 grandchildren and her great-grandson (she really only knew one because she had never met Em or Noah). She made the best chocolate chip cookies and cherries jubilee. She collected seashells and appreciated the small beauties in life, like love and family. She had fun jewelry that I would dress up in whenever I went to her house. All these are fond memories, but what I admired most about my gramma was her love for God. She treasured His word and knew SO deep in her heart that Jesus Christ had died for her. She did not take that for granted, she knew it was a gracious gift…
Anyway, think about why you love the people you love. Think about their qualities, even the ones that make you crazy sometimes. God has woven all of our lives together for a purpose…don’t get stuck in a rut (a grave without ends) because you don’t see eye to eye on everything. Honor them, tell them you love them. Jason and I can never say we love each other enough because if those are the last words, they are powerful ones. I loved my gramma. I pray that in the years that she did know me, she always knew that. I knew she loved me…
Sorry about your grandma, what a women. I remember her from your wedding, very precious. The saga goes on with the docs. can you even believe it. I think of you guys more than you ever know. I continue to pray for healing, strength and direction for you and Jason.
I love you alot
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I am so sorry about Grandma Biebel. She was such a wonderful person. God has called her to a wonderful home where there will be no more pain or suffering. I can even picture her as an angel smiling down on everyone. She had such a great smile and warm eyes. She will be greatly missed.
I know that God will continue to guide you and Jason and watch over you, Em and Jason. Noah is such a precious litle guy. As long as he is in God’s hands he can’t be in a safer place.
Love you all so very much,
Aunt Diane XOXOXOXO
I am so sorry to hear about your grandma. There is something so special about grandmas. They are irreplaceable. I loved hearing about your memories with her, they are priceless. You are in my thoughts and prayers.
I love you guys!!!
We have never met although we have a mutual friend who introduced me to Noah and your family by a story. I follow up on Noah daily. I have no words when I pray for him but I beleive that God’s Holy Spirit can interpret whatever it is that comes from within that I just cannot find words for.(Romans 8:26) I can relate to you on some small scale as we too had to make some serious decisions for our baby when she was just two months old. We found ourselves at TCH as well. Reading what you have written here has actually been quite healing for me, even though our ordeal was over some time ago. I remember it as if it were yesterday. I will continue to carry your beautiful family in my heart.
” The Lord bless you and keep you;the Lord make his face shine upon you and be gracious to you;the Lord turn his face toward you and give you peace.” Numbers 6:24-27
Grandma (Dolores)Biebel was my mother-in-law…..she was a Proverbs 31 wife and mother…..she was a wonderful wife, mother, mother-in-law, grandmother and woman. She was also a very brave woman, who, after losing 5 babies, kept on trying, and finally had a daughter and son, whom she raised in the admonition of the Lord…and whom she prayed for every day of her life…..may all of her prayers be answered…no matter whether she witnesses it from this world or heaven. She didn’t go from life to death…she went from life to life. Love, Mom (Betty)
“We can stick your kid with needles 12 times a day for blood draws, but if you want to use needles for something that could be therapeutic, well, I don’t know – we’ll have to think about that.”
Sounds like you’re doing a good job already, but remember that he’s YOUR child, not theirs, and for all the recommendations in the world, you can still say ‘no’ or force an issue.