The new reality

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Granted, I am still exhausted from three weeks worth of Marsh’s health events but…

It took me 15 minutes short of TWO hours to prepare Marsh’s meds this morning.

And I have had 2,119 days of experience (minus hospitalizations when someone else does the job.)

396 days ago Marsh was on a mere SIX doses of medication.

Today he is on TWENTY SIX plus a topical cream three times per day.

I am not so great at math but that adds up to 29 doses…

Thank you so

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The terror of the past three weeks with all Marsh has been through busied me so much I could not properly express my gratitude.

The support, kindness, good thoughts, huge prayers, skill, and actions of many brought Marsh and me to right now: cuddling at H-O-M-E with Daisy at our feet.

Thank you to the nurses and staff at Upstate.

Thank you Super Smith, Dr. Egan, and the team at Pedatric Cardiology.

Thank you Dr. Friedman, Dr. Kane, Dr. Baird, and the armies of nurses and staff at Boston Children’s.

Thank you to the best big brothers Marsh could ask for.

Thank you to Dan for shouldering a corner of this wild life with us.

Thank you to my family, my grandparents, my grandma, and Marsh’s grandparents for traveling for visits, hand holding, help, and hugs.

Thank you to my sweet step sisters, their partners, and their families for so much I can’t even express at this time.

Thank you to friends like family and the world’s best neighbors who helped to make all of this easier.

Thank you to Marsh’s dad and his tribe for covering the times I could not be there with Marsh.

Thank you to the armies of people who reached out to send good thoughts, prayers, cards, messages, texts, blog shares, and financial help.

Thank you to the S-E team for such kindness.

Thank you to the Sherburne Fire Department and Auxillary for leaning in with heroic force.

Thank you to Dr. Jim for his wisdom, guidance, ears, and reassurance.

Thank you to the armies of people we have met along the roller coaster of the past six and one quarter years since that prenatal diagnosis.

And, most of all, thank you Marshall for being the strongest and most loving person most of us have ever met❤❤❤❤❤❤

Sunday

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Greetings from a mama who managed to sleep for 5.5 consecutive hours for the first time in a week.

Marsh and his dad had a boy’s night. Marsh was up late so he was still asleep when I returned to him this a.m. His nurse wasn’t able to chat long but his o2 and heart rate numbers looked ok to me.

I am not sure what the plan for today is ( as Marsh’s dad was half asleep when I was there) but know that it probably involves more labs, xray, And ekg.

More updates later.

Please send good thoughts and/or huge prayers .

Hugs and love❤