Catching up is hard to do

I love you Pam, you are a GREAT mother and a wife. Thanks for carrying the blog as I disappeared back to work and for carrying the house and the hours of nursing work daily when you are almost due, not sleeping and have a long day with a very sick and very determined little girl.

I get Sasha's smiles because I show up after a very long day. So yesterday I worked from home and it was wonderful to be together, Sasha and I had walks and shopping for groceries with lots of visits, we all had lunch and dinner together, wow. But Sasha's bag kept leaking, we had to go in Tuesday because the belly skin around her fistula was burned, and then I put Sash to sleep and she just whined and rolled from side to side and looked at me. After 40 minutes I called to Pam and took a break. I honestly cannot imagine hours of that. It was as if after spending the day I got the same treatment later at night.

Unfortunately her sleeping only a few hours and then calling us to lie with her to sleep for hours puts a crimp on our evening time together, work on the blog and other stuff. We dont think now is the time to change anything. Are we wrong. When Sasha cries she can hyperventilate and go blue. Once she had a fever and shook and turned blue in the space of minutes - firemen brought us oxygen and we screamed down by ambulance to Sick Kids.

For me the last week has been the end of the cycle of firsts, where I hoped When we do this for the first time, or go there again, or Sasha does this or that then she will from be more animated. We took Sasha to a mall for the first time on a rainy Saturday last, and I hoped she would jump out of her stroller with all the excitement, but she didnt. Sasha is tired, we are tired. I keep wondering if we could stimulate her more, show her more things, play with her differently that she would be interested in people or standing or playing more (she does play and she does smiits wonderful to see but its much less common). Lets take her to the zoo for the first time! I keep hoping she will wake up less uncomfortable, her tummy get smaller, her organs shrinking, the high pressure in her portal vein lowering, you know, the impossible stuff.

And in case we draw too one sided a portrait, Sasha loves to gurgle and yap when she wakes up and just as she goes to sleep, or if she really needs to throw up, she might want to play after that. And this happens during the day. When I call out to her on our walks she calls back. She is not a mummy. She crinkles her nose with smiles. She smacks her forehead like Oh Goodness. She points fingers to be touched.

Alagille Syndrome occurs once in 50,000 to 100,000 births, numbers vary, but there is a tremendous range of heart and liver misconfiguration. Based on her developing portal hypertension by 12 months and having no pulmonary artery at all, she is on the far range of those numbers. How lucky for us to meet such a precious thing. We had a time when we asked councellors Why does this happen, i.e why us? And the Buddist nun said Suffering is normal and she will be reborn and all her struggle and your love will no doubt put her in a better life. And one Jewish story is of the Gilgul, the soul who departs quickly because they came back just to right a wrong and get peace. And we had our NaNoten Koach (Givers of Strength, biblically this is done by G-d of course) in the form of family and many doctors and nurses so many of who know that silent presence and affirmation of parent's anger and pain and tiredness is ok and those who do know what to say like Dr Russell or Dr Chitayat.

Having Sasha is a remarkable coincidence. Having her come home was against the odds. We are not religious but we did have a menorah unlit in CCU as she haemoraged and her liver numbers showed failure ; and we had a seder in the cockpit of the Terrace Cafe at Sick Kids with Karen and Anna from Gen Surg after she had survived sepsis shock in 6A. Its a family thing, with lots of wood, and wine. And then after weeks of bleeding she stops, the day after our arrival home.

4 comments:

  1. Anonymous1:37 AM

    oh, my god, how much you love your wife! you are trying to soothe her about this beautiful angel and the meaning of it all.

    i have a child who is sick too, with ms.

    i love this blog, looking at this little golden haired adorable angel.

    do not lose hope.

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  2. Anonymous2:47 PM

    I have been reading your blog and I am amazed - absolutley amazed - at your honesty, your strength, your determination and your ability to find beauty, gratitude and insight in life's painful mysteries. I am so pleased that Sasha has parents like you, and that you have eachother.

    I pray for you every night. I pray for Sasha's comfort, a sunny day filled with flowers and birds, the kindness of strangers. I am so grateful that you have been surrounded by kindness.

    Enjoy the zoo, enjoy the sunshine.

    LE
    xoxoxoxoxoxox

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  3. Marcia11:22 PM

    Jonathan
    your entry tonight is beautiful and poignant. After a long walk with Sasha this afternoon I thanked her for helping to keep me fit. Most of all though I thank her for being the incredible little girl she is. I know that you and Pam are both amazing parents - she has been surrounded by love starting with you two and then radiating out from grandparents, siblings, cousins, family, friends, medical and nursing staff, neighbours and even Sammy Sam, with whom Sasha enjoys sharing her food. You three are an inspiration.

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  4. johnny, pami, and sasha--

    your blog is priceless. i feel so far away, yet, when i read this it makes me feel closer to my family. i'm sorry that i cannot be with you during this trying time. i think about sasha many times throughout the days. i check your blog for any possible update. i find myself calling my dad to see if he knows anything..calling sammi, just anyone..it worries me. yet at the same time, your family has been able to see a bigger picture here. you are amazing parents, i hope to one day follow with such strength, dignity, love, and compassion. sasha is a bright light that has come into all of our lives, and her light will continue to shine forever. the amount of people that she has touched comes as no surprise, i carry her photo in my wallet and show my friends...such a proud cousin!!!! i have to say, she is such a looker!! i do wish things were different, but i also know that sometimes there is no rhyme or reason to life...this situation i will never understand. what i do know is that your family is a unit that cannot be broken. sasha is blessed to have such giving and loving parents. i am blessed to know sasha, and have her as part of my family. you two aren't too shabby either!!! ;)

    i love you all very much, and miss you to pieces.

    love your cousin MONGO!!!! ;)

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