It is safe to say in the chapter of my book of life, this last week will surely be labeled as one of the most challenging. And trust me when I tell, you, I have had some doozie weeks.
My oldest son, Ryan, 25, was born with so many anomolies I cannot even begin to list all of them. Diagnosed in utero at 30 weeks with complex congenital heart and bowel disease (his heart is in backwards and his organs are mostly flipped to accommodate), we have spent the last 25 years trying to fix all of the mish mash inside of him so he can have some kind of a stable life. Bowels that were twisted had to be pulled out at 3 days and put back in. He was later diagnosed with a disease that causes nerve endings in the rectum to not work thus backing everything up like an overworked sewer waiting to burst. For that reason, he had two colostomies and years of bags, changings, and pain on top of limitations.
He has had over 9 heart procedures - 2 open heart surgeries to "re plumb" if you will, all of the veins, arteries and assorted in and out lines needed to get oxygen to his body. He has a huge hole between his ventricles that cannot be closed and oh, yes, one of those ventricles does not completely work right.
That is a small sampling.
I would say our greatest issue for Ryan has been this wicked, nasty, arrogant SOB of a pathway or two that likes to misfire at random - also know as supra ventricular tachycardia SVT. Without warning - ga gung, ga gung ... his heart rumbles and beats over 150 beats per minute. Unstoppable without medication. In utero, his little heart was beating over 230 times a minute when it should have been less than half. Mother's intuition told me something was not right with my first baby. A trip to the OB GYN proved me right and landed this mom in Pennsylvania Hopspital from the first day of summer, 1989 until his birthday, July 14. High risk. Docs not sure what to do with us. Lots of IV drugs to cross the placenta to get his heart rate down so all of the fluid building up could be pumped out. A scary time for me.
He arrived into this world screaming and was taken to the Children's Hospital of Philadelphia where we have spent many months in 25 years.
Fast foward to this past week and one last try to ABLATE the erratic pathway. 12 hours later and the doc was not successful. One of the hardest things I ever had to do - tell my son it did not work. That his heart would still beat off kilter on a whim. That getting on an airplane to finally see Germany would not be an option. That he would be in living in an ambulance and an ER for a long time. The good news? He was alive and was not cracked open for a pacemaker.
He took it like a champ. There were tears, but he was brave. And he is here.
And I have so many people asking me HOW ... How do I do this? How do I handle this stress? I tell them it is truly what any mother would do for her children. It is a love that runs deep.
My life is for my children ~ for Ryan's heart. For Stephanie's autism. To guide Nick as he breaks into adulthood.
Been quite a ride so far.