Change of Plan

Change of Plan

YOU are amazing, absolutely amazing.  Giving, supporting, loving.  I’m not sure I’ll ever be able to ever thank you enough.  Posting the Go Fund Me page was terrifying  and I need to thank you for suggesting that we simply ask for help.  By doing so, by peeling back another layer of mySELF, something amazing has happened.

Our week started with a date for surgery (SO HAPPY!!!), October 14th.  We applied for, and were approved, for lodging in one of the Family Housing units.  I felt great about that, having coverage for 3 weeks.  We were able to finally start talking with our families about how to make sure Malcolm was cared for and loved in that time too.

Next, I posted the fundraising page – and as you know, I am blown away by the response.  Family, friends, friends’ families, people we have never even met, have been donating – generously.  It has been wild, and it continues.

Thursday, Joey had his monthly cardiology appt with our local cardiologist.

Fascinated by his own heart.
Amazed by what he sees.

…and based on what they saw on his echo and lower O2 sats, the doctor felt that we are going to be doing surgery much sooner than October.

Holy jeez.  I had just settled in.

Ugh.  But good for Joey, for letting us know that October is too late, that he needs some extra attention before then.  I can not explain to you how much I appreciate this about him.  I had no luck in hearing back from anyone on Friday about when all of this will happen – so come tomorrow I will be starting fires everywhere, and will keep them going until WE know what happens next.

The next week may be a whirlwind, with us possibly ending up in Boston.  Are we ready?  Yes and no.  I pulled out my suitcase this morning and am starting to get myself together.  The whole Malcolm piece is up in the air, the next few weeks are crazy for our families – surgery (Chris’ parents), closing on a house and moving (my parents), etc.  If we need to, if we can’t get family housing when we need it, is to have Chris travel back and forth while I sleep in the hospital room.

TODAY, today we celebrate our THREE YEARS with Malcolm.  He is one of the most beautiful and compassionate souls I have ever felt.  If you know him, or are friends with me on Facebook, you know how much he makes me laugh.  His hugs are unreal, and his patience is unmatched.

I’m feeling awfully blessed.

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2 thoughts on “Change of Plan

  1. Where is the hospital? I can ask local Boston friends if they have room for you in their home. I also can ask my uncle if he has a hotel in Boston. he manages hotels around the US. I forgot to reach out to my teacher about watching Malcolm, but I am sure you’d prefer to be together, so maybe she is available to watch him. When you know the dates, let me know! You are so brave, and still sound so positive and I truly believe that is so important. The mind is a very powerful thing. Love you and thinking about you and praying for you often!!

  2. Check the Ronald McDonald house in Boston. They provide housing for families in your situation. They provide a clean, safe place to keep your family together and meals too! I do not think they charge either (not sure, though). Plus, other families are there going through a similar scenario so you have a built-in support group. Much love to all.

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