Fathers Day, everyday

I got my best card ever yesterday, a pink baby elephant sitting on a bigger purple elephant from Sasha. I never knew that a little card could make me so happy. Sasha loved the picture as well, I guess she forgot what she chose. Being a father has been a new life, the only thing I can compare it to is leaving South Africa and arriving in the whole new world of Canada. As someone famously said, The days are long but the years are short. I cant believe it has only been two years!

Last night Sarah and Betsy visited and Sasha was animated when Betsy turned on the talking Teddy (The wheels on the bus go round and round, Hullo, do you want to play today?) and Sarah discovered her little popup toy, figuring out immediately to push the popups back in. Then it was off to Granny and Gramps to see everyone except Sean and Mark (felled by too much South African Freedom Day sun and sausages). In the car I turned up the tributes to that famous 64 year old and Sash clapped away - but it was not to last, she was so cranky we had to leave after just an hour. Pretty much straight to bed for a quick nap and then the usual game of sit up, bug eyes, pointing NyaNya to the door, napping and getting us running up the stairs at her call. Ah Sash, you have my sleep habits on top of your Alagille itch. We kept monitoring her bag as nothing was coming out, the sign of a big clot getting stuck inside. The big ones can literally push off the ostomy bag.

I cannot lie with her for longer than a few minutes without getting teary, her beautiful golden legs and shoulders are skinny, just a trace of gold fuzz on her arms, as she keeps picking at the gauze covering her PICC and around her belly. She is in #5 diapers because of the size of her tummy but her thighs are smaller so she keeps leaking, Mom says I have had some horrible regression in my kid care skills but same happens to her diaper folds. So we go through all our fitted sheets everyday. Thank goodness for the plastic cover we put over the mattress, not sure why it took us two years to buy one!

Now she sleeps, Mom sleeps down stairs and all is quiet to the drip of the rain outside for the thirsty flowers. That means the red roses on the street will be full and one will be ready for Sasha's headband.

I just remembered, two days ago, I awoke in the morning as her calls seemed just a whee bit more insistent and I found her hanging off the bed, tummy on the edge, feet flailing, fingers gripping the sheet, about to fall down onto the floor. Sash has no interest in standing or walking. She can bear her pink stuffed mini throne chair but the only places she really likes is in our arms and on the bed. And on the bed what I have loved to see over the last few weeks is that she first relearned to roll from side to side and now is pulling her leg over so that she is almost on her belly, her favorite position before the surgery. I got such a kick out of waking up and seeing her sleeping on her tummy with her bum stuck in the air and her legs tightly curled beneath, her arms tight to her sides and her face plastered sideways into the mattress.

Thanks to everyone writing in, it means a great deal as each story is different and it is so important to remember that Alagille ranges very widely in severity and that so many moms and dads have lots to look forward to.

* The beautiful fingers of an Alagille baby....Sasha you are just like my Jordan in so many ways. We love reading about your days and your walks... all our love,
Leisa & Jordan (AGS) - Australia

* My Heart is with you today and I am not real sure ow you get through, but I give you all my strength anf prayers - you are such a great Father and role model for parents of Children with Alagille. Reading Sasha's blog made my heart jump out of my chest - she is so beautiful, she is a true angel.... I am praying that she is content and doing okay along with the rest of your family. I hope that you know how great of a Father you are, you make our family stronger - You are special to us...We hold a little place in our hearts for Sasha and she is included in all my prayers. Love Kristy And family (JIRI AGS)

Thanks, we get strength from our little fighters, our incredible spouses and our supportive family. Pam is amazing, she is now in the waddle stage but still hitting the stairs to deal with the meds I didnt pick up - it has been an evolving feature of our relationship that when one of us is dispirited the other is ready with some sick humour or stay the course support. I am more mobile and able to hold Sash. Pamela is fastidious in keeping Sasha in clean sheets and clothes. We are more of a team than ever before - thanks Sash!


  1. Anonymous10:04 AM

    It was very special to have Jon and Sasha for Father's Day. We know Pam that it was so hot and must be very uncomfortable now - but the best uncomfortable in the whole world- only about 2 weeks to go or less!!! For Henry it was special having all the children (you just missed Sean) and all his grandchildren at the house. It was so meaningful for me too. The icecream cake dessert said it all "super Dads, Grampy Henry, Jon, Mark and Kevin." We are grateful for each milestone and for everything that is usually considered mundane that we can all share.
    Pam and Jon you are the most amazing parents caring for an incredible little girl. Often those words are just a cliche I mean them in a deep and appreciative way.

  2. Anonymous11:40 PM

    My father's day this year was blessed with Sasha's presence together with her cousins Ethan, Theo, Mattie and Kate and parents. The "big" grandsons brought cards- they proudly told me that they had written their names themselves. Sasha's super card had messages from Pam/Sasha and also from Jon too. All these are in my box of treasures. The videos and photos of that day and so many other visits and special occasions will be beautiful momentoes.