OK, I just want to let some of you in on a little something. This past weekend played hell on me and Todd as well. With the new site (Thank you Alisha and Lori) going up to help us with our travels to Boston..and the reality that IF we have the funds to do it then what other reason can I come up with NOT to go....I am so torn. Tucker has done things on his terms since he was born, leaving signs for me and as long as I will listen we figure them out. Some of you don't know all of our history so I am going to fill you in on "Tucker time".
Tucker was diagnosed with Downs Syndrome when he was 21 weeks old...in the womb. At that same time we were told that he had a hole in his heart and that the left side is significantly smaller than the right...we had to wait and see what would happen at birth. We did numerous sonograms, stress tests..any little thing and I was in there checking on him. At about 2 weeks prior to birth, I was miserable and contracting and would run to the hospital at the drop of the hat. Dilated to one and growing, admitted to the hospital and they tell me that they don't feel comfortable with Tuckers diagnoses to deliver him there. Mind you this is the hospital that I had been to several times..now I am dilating and we have to switch OB's and hospitals. I met the OB on Thursday and Tucker was born on Sunday. (Tucker time, give mom the time to figure out what is best for him.....THEN and only then does he make it happen)
At 17 days old we had our first open heart surgery, the Norwood procedure. This was later than we had scheduled because a mysterious infection of sorts appeared in his Pic line. This infection appeared on the initial culture and never again, but postponed the surgery. There are two heart surgeons at Mercy and one was on vacation and had been for two weeks. Tucker's surgery was postponed long enough that we got the "fresh from vacation" surgeon. "Tucker time "
Mind you, I know "Tucker time" is also Gods time...leading us to the right time for Tucker to advance medically where he needs to. This comes to the story of how I found out about this hospital in Boston. I was attending the Down Syndrome Christmas party for the first time ever. I debated whether to go or not, Tucker had been sick, should we ,should we not and at the last minute I got everyone dressed and off we went. We got to see Santa for the first time this year and had sat down to eat our breakfast. There were no tables available so we sat on the floor. A lady came up to us and offered her table to share. We got up and headed that way. Come to find out she had her sons surgery in Boston last May. She gave me all the information to get ahold of the surgeon for an opinion on Tucker...a sign right? What are the odds? Her son has the same diagnoses as Tucker but on the right side....she has been a great source of support.
Now here we are, surgery scheduled and I am freaking out. Tucker followed me around all weekend,,,,,is he trying to tell me something? Am I missing the clues, the spirit? Is he telling me, Mom I need this surgery or is he telling me NO. I fought tears all weekend. I just want what will keep him here with us....surgery or no surgery. I am so scared....we are all so scared.
The Twelve Mile Bike Ride
6 days ago