Star Light, Star Bright

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Stars shine brightest on the darkest nights.

Theo’s breathing is still struggled. When he’s awake, we spend his days repositioning him to help open his airways and massaging his jaw and facial muscles to optimize his tone and encourage his swallowing reflex. Over the last week, he has started vomiting frequently, which our doctors suspect is either a side effect of a respiratory infection or an intolerance to his feeds but every time it happens, we’re on high alert for a potential aspiration event.   We continue to live each day dichotomously: joyfully celebrating that Theo has surpassed expectations and fearfully accepting that it could also be his last.

There have been days over this last week where I am unjustifiably angry. Angry that my son has been deprived of a normal life. Angry that when he cries out in pain there’s little we can do to help him. Angry that the unknown woman I saw on the sidewalk laughing continues to go about her life as though nothing has changed.  Angry that the sun continues to rise for the rest of the world when our days are still dark.

But on the darkest of days, I look up and I see the stars – the many Teddies above Theo’s hospital bed. These bears are symbols of hope, encouragement and strength; messages of love and support, heartfelt prayers and best wishes from your homes and hearts to ours.

You have infused our life with hope and love. From every corner of our hearts, thank you. Thank you for sending these stars to fill our dark sky.

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8 comments

  1. The darkest night often brings the brightest tomorrow. Hoping the sun shines down on your hearts and on Theodore’s.

  2. Oh you dear, dear people. Indeed a gutting experience for you. Yet, what a beautiful lil soul he is. My soul cries for you all. I pray…

  3. Although I do not know you, I was drawn to read all of your entries. You are two very strong individuals, and my thoughts and prayers are with you and your family. xo

  4. Theo is beautiful and looks very healthy. I know some of what your going through. Our granddaughter was born with charge syndrome, she is deaf, blind in one eye, had a defective heart which she has had open heart surgery. She gets fed with a feeding tube for nourishment to help her gain weight but when all is said and done she is the most beautiful and happy little girl. She is time consuming but us along with her parents wouldn’t change anything for the world. You will have tough days but think positive and give him all the love you can give and he will surprise you. God bless you and I will pray for Theo. Sue.

  5. May God’s love continue to surround you and give you strength. This is a difficult time but we all believe Theo will make it through and we are praying each night to give you the strength through these days to stay positive and keep finding the hope to get you through. Words cannot express how much we feel for your family. God bless you.

  6. Anger is a normal feeling when anyone is hurting, but do your best to find find a way to release it somewhere. It can be so toxic. You may think that I don’t know what I’m talking about what your experiencing and on some aspect this is true but we have lost 2 young boys in our family this winter and are no strangers to hurt.
    You have come a long way in 2 months, and am happy you get to leave with little Theo, Change in surroundings might be just whats needed. This cold weather is bound to let up soon for some nice walks. I’ll pray for your strength and well being for all 4. XOX

  7. This photo of Mark and Theodore is so beautiful! The love between them is shining through and brings tears to my eyes (as most of your posts do!). I could imagine you’d want to cuddle him and never let go…. Much love to all of you xxoo

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