The chronicle of a family thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.
Saturday, October 4, 2008
Love the Weekends
Jaime and Simon are snoozing on the chaise lounge right now and I happened to glance up at the monitor where Simon's heart rate has hit an all time low of 91. Yeah, 91. That's so much closer to a normal deep sleeping heart rate than we've ever seen. Something is working right now and the little man is getting the rest that he needs for his heart to have the chance to heal and grow strong. What's just as amazing is that these days when he's awake his heart rate is in the 120's and 130's as well. Unless of course we're changing his NG tube or giving him a shot (we're needing to start his 6 month vaccinations and make sure that he's got a flu shot for the upcoming season). But even then he's recovering quicker.
I believe that we are on the right road.
Shimmy and I spent a good amount of time on our walks these days talking about the Jewish High Holy Days and what a wonderful opportunity this time is for deep healing, fresh starts, and taking in the sacred as it's thick in the air right now. I've been singing to him songs in hebrew and talking about all the wonderful food that comes at the end of Yom Kippur during Liz's traditional Break Fast gathering. He's not so sure about creamed herring but I've told him that we rarely see it anymore since we've stopped going to the Raliegh Hotel where PopPop used to sing for the High Holidays.
We also talk about how even though we're not moving far geographically speaking from Bed #22 at Children's Hospital that there is so much to look and wonder at. From the cars and people that go by the window, to the new scrubs that different nurses have on, to the changing leaves and flowers that we can notice on our daily but same route walk everyday.
More than anything though I have to say that these weekend days are sweet with the three of us spending such wonderful time together. Even though we are not out and about, we are together and it feels just delightful.
So...Nu? We are raising a beautiful baby boy. We are raising him in the ICU yes...But we are raising him with love and support and spirit and joy and books and baths and exciting new outfits to fit his growing body, and so many opportunities for positive connections with his world and the amazing people in it.
I feel joyous today.
Riding the wave for as long as I can.
Laura
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3 comments:
Most of the times when a parent meets a role model...a parenting role model that is...usually its someone with older kids. Normally its a parent(s) who has a lot more experience that you have had and has wisdom and advice to pass on to you. That's how it normally is. Not so for me. Jamie, Laura, and Simon are my role models now. Seeing them go through this experience, its tremendous highs, its staggering lows...and their near constant optimism and hope...they're the ones i look to now to see how its done. I love you guys and I'm thankful to have you in my family. xo fred
First, the neighbors dog barked all night, then one of the AC units decided not to work and Z and Cecelia had to go out at 5:30(in the rain) but when I read Simon's blog ~ I smiled!
What wonderful news you have had the past few days. Seems like Simon and his medical team are in agreement on this new program.
Here's wishing you many more 'sunny days' on your road to recovery!
Love,
Carol, Pat and Katie
(Z and Cecelia, too!)
yay double digits!
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