My real life by Yvonne

This is from Sam's caringbridge page...for Mother's Day....





Happy Mother's Day!
I love being a mom & I love being a mom to my Sam! Being a mom to Stephen was always so easy, never any real problems, from his birth on he's been "Even Stephen". We always felt God gave us Steve to ease us into parenthood. He was such an easy baby/toddler/preschooler/ elementary now middle school kid- soon to be HIGH school. But being a mom to Sam has taught me so much! I feel like I grew up and put on "big girl panties" with Sam. The responsibilities from the pregnancy on have been mind blowing. I feel like I've had the responsibility of his very life in my hands and that is a heavy load. I am thankful that God has been beside me all the way, cause I don't know how I would have handled things without Him!

You get use to all the meds, doctor trips, machines...you're the mom. I've seen it with other families who deal with mucy harder issues than we do, you do whatever you have to do in order to take care of your child! It just become a part of the "new" normal" for your life!

I'm so thankful that God entrusted us with Sam, every day is a gift, every laugh, every snuggle...sometimes I just hold him close to me and kiss him on the top of his head and my heart overflows with gratitude to God who gave me such a wonderful blessing! It's not been the easiest path, but I wouldn't trade it for a million dollars! There are parts, I'm glad I don't have to relive-you couldn't pay me to go through his first year again! That was rough but I wouldn't trade it!!!

May 19th Sam has an EUA (exam under anesthesia) scheduled in Miami. It's not really a surgery, Sam is just put under for an hour or two at the most for various eye exams. It's the only way to take a picture of the optic nerve and we have to constantly compare the picture, from the previous picture to make sure there are no glaucoma issues causing damage to the nerve. With an EUA it is possible to examine every little part of his eye and make sure all is well. It is necessary but I HATE it!!!!!!!!


It's scary for anyone to go under anesthesia but with Sam there are so many issues. It's always a stressful time for me and I make it stressful for everyone involved! He has to get in early so he doesn't go too long without eating/drink cause of his hypoglycemia. And sometimes being under anesthesia messes him up no matter how perfect the timing is. The last time he was under in August, he ended up back in the hospital when we got back home for 3 days. Miami Bascom Palmer is great but they are a teaching hospital and sometimes, try to use NON board certified anesthesiologists on him. Once I stopped them as they were taking him into surgery and insisted on a board certified doctor. (non board certified don't mean they are not doctors, just that they haven't taken their boards yet) As you can imagine, I'm not the most popular mommy that comes in!!!!! The head of anesthesiology once wrote in an email (that I accidentally read) that I was neurotic!!!!! Let me tell you, we had a "come to Jesus" meeting !!!!! Sometimes when a doctor deals with non life threatening health issues, they don't always look at the BIG picture so God has placed me there to help them at least in Sam's case!!!! I'm not saying that they are bad doctors, JUST that 99% of their patients have no other issues....so it's easy to think of things as routine when they are not! I had shared that email with our favorite doctor down there and he was laughing and saying how he felt sorry for the guy when I got ahold of him! It was pretty bad. Jon still laughs about it and says I FINALLY have a diagnosis for myself, I'm neurotic!!!!!! I've had to do CPR on my son, hook him to a machine evey night and watch him have seizures...I have EVERY right to be neurotic!!!!!!!!!!

So there is a lump in my tummy thinking about the EUA in a week and a half! Good news is that there is finally a decent hotel near the hospital. In the past 6 years, for the most part we have stayed at we lovingly call "the Roach Inn'. Because of traffic and where the hospital is at, it is so much easier to stay by it! Bascom Palmer (BP) in on the University of Miami's medical campus. There are about 20 large hospitals on the large campus. Everything from Jackson Memorial, to a mental hospital, a Parkinson's hospital Cancer, Ceder's Sinai....etc......The whole campus is in the HOOD!! It borders Little Havana to the East and Liberty City to the south. It's in the corner of I-95 and the Dolphin "Expressway" and the bridges to take you across to the beach. A few times we've stayed over at the beach but it's just too far in the mornings and a couple times we've stayed by the airport which is only a few exits to the west but if there is bad traffic, it would be impossible to be there on time plus on the day of surgery, it's a pain to have to pack up your room and get to BP by 6 or 7 am...But now there is a Harriot Suite within walking distance (not that you'd want to walk cuz there are some rough folks out there!) I remember the first time we went down knowing how often we'd be going (they told us to count on coming at least once a month) and I cried cause I just didn't think I could do it!!!!! It is not the Miami of Miami Beach!!!!!!!!!!!!! Anyhow I'm so thankful to have a safe nice new hotel to stay in. It even has shuttle service for the 3/10 of a mile so I could leave the hotel room with Sam and they can pack up the room and then come and join me at the hospital (y'all know you have to gt there so much earlier than when the surgery actually begins) And it's only $109 a night- the Roach Inn was $80 a night and I can't tell you how rough it was! Even tho most of the customers were people associated with one of the hospitals, not everyone was....we'd just check in and go stay in our room after we thoroughly sprayed it with Lysol!!! Anyhow this takes alot of stress off me!!!!! I could even go by myself if I had to. I did go one time for some appointments by myself (and Steve) a few years ago but it was unnerving. And y'all know I'm NO wimp!!!!!!!! It is a rough place for a hospital!!!!!!

So that's what up with us! I'll let you know how his EUA went. Please keep him in your prayers that all is well. We only have one eye that is functional now and it wuld break my heart if soemthing went wrong with it! That's why we faithfully do 30 eye drops a day. When I get frustrated by trying to get them all done, I remind myself, how blessed we are to have the option to take care of his sight! What if nothing couldhave been doen and he was completely blind???? I'm thankful for the sight he has!!!!!!