These past few days i have been going over these past three months a lot. These past three months have been some of the loneliest in my entire life. It was exhausting, draining, so lonely, intense, and some of the hardest days of my life AND i have had some VERY. HARD. DAYS. in my life.
We came home on May 12th....worn out, exhausted, jet lagged, tired, drained, and as i told someone today who just came back from a long missions trip....there was really NO TIME for recovery from any of the week that we had just experienced. We were both shocked over Ethan's weight, malnutrition, but especially his attitude toward us. We were shocked as to how much he ate AND how much he drank as it seemed almost non stop BUT what was also a wonder to us was that he didn't gorge himself....he ate a LOT BUT he DID stop too. The hardest thing was the biting, hitting, pulling hair and pinching that started well, on the ride away from the orphanage. I had a black and blue mark for the entire week that we were there as it was a bad bite.
The first night we were even more surprised by the way that Ethan slept or should i say...DID NOT SLEEP. We just assumed it was because everything was new and different and he had never slept with a mommy and daddy. (the play pen that was in the room had no way to zip up the side of it as it had an opening to zip but no zipper. we had put Ethan in there to see if it would work and he was TERRIFIED and crawled out so quickly that we couldn't figure it out----it was dark and very late so we didn't see what had happened until we figured it out in the morning!!!) Ethan would get to sleep BUT he would hardly STAY asleep....he would sleep up against the wall SITTING UP then he would lay across us and then i would awaken to his NOT BREATHING!!! THEN he would snort and start breathing again. Needless to say, Scott and i didn't sleep well then either! We assumed that when he got home and into his crib that he would NOT be doing this anymore as we assumed it was because of his sleeping conditions.
WE WERE WRONG! The day before we got home we FB messaged our kids and let them know that plans had changed and so we decided to have Ethan in OUR ROOM and Sophina got kicked out into her sister's room. We thought that we should at least check more on Ethan than we were needing to for Sophina. WE WERE RIGHT!!! Ethan continued to stop breathing AND i HAD to get a video camera as we would hear all kinds of things while he was napping. The video camera showed that he was not only doing EXACTLY what he had been doing with his parents in Bulga*ia BUT it was even worse as i watched him running around his crib in order to find a better spot to sleep. He was doing the backward somersaults still and he was stopping his breathing and he was sleeping sitting up in the corners and he just was NOT getting sleep.
Ethan was also hitting, biting, pinching, slapping, and acting out against his sisters DAILY and OFTEN! It was SO HARD!!! Sophina got a black and blue mark across her forehead from him hitting her over the head with his hard plastic cup. THAT was one of his first meetings with her. It was often that he would hurt her BUT it was DAILY that he would hurt the girls. They would have bite marks that would look like welts on their shoulders, legs and arms. It was SO DRAINING to watch as we would all be excited as he would cuddle and then our shock would turn to HUGE disappointment as his cuddles would turn to pinching or biting or any form of pain that he could inflict. He didn't do it in front of strangers SO he wouldn't do it in front of Liz or Nate as they were here a few times or people who would stop by. He ONLY did it to people who were there in his life daily.
Scott had only been able to be home after coming back from BG a few days so it was me without our PCA helping with Sophina as she was in Africa on a missions trip. THEN Ally left for her missions trip and that same week was VBS. Let's just say that it was a really hard time in that time period. Having Scott gone SO LONG was and is inexplainable to anyone. It is one of those things that i kept trying to explain but it is inexplainable because one has to experience it in order to understand it and what those almost three months were like.....is not able to be explained. ALONE.....OVERWHELMED and wondering if it was always going to be like this or not.....how was i going to do it!?!?!
THEN....Ethan had a surgery that was supposed to be a 'typical' surgery. It was being done at the hospital instead of the surgery center only as a precaution AND it was only a precaution that we were going to be there overnight. Ethan had other plans. It was almost a week. Ethan's oxygen levels were not good AND he only stopped breathing one time while there.....as soon as i left the surgery room after seeing that he 'went to sleep'. I had warned the Dr that he did that so they were not surprised. He didn't ever do that while in his room however and even still his oxygen levels would be at the 70/80's range when he would stick his tongue back in his mouth OR when he wouldn't swallow his med and so it affected his breathing as he slept!!! He also would NOT drink....PERIOD! He still isn't-btw! He was called "FIESTY" and "STRONG" by every nurse who would come in. We had amazing nurses and several who went above and beyond. They were so busy though and i was so overwhelmed that it would happen that Ethan's meds would be past due and then....it was NOT pretty. One of the first days as i was all alone then...i held him for almost ten hours with him screaming for a big part of it. He would NOT sleep....even with the pain meds. That poor nurse was trying to find ANY way to help us as i am SURE that Ethan was NOT making a pleasant experience for ANYONE in our area. We finally just figured out that Ethan's NOT going to have great oxygen levels as he has lived like this his whole life and my putting the oxygen 'tube' blowing over his face didn't even help as he HAS to get his tongue down. We also knew that there was NOTHING that we could do to MAKE him swallow his med as he would hold it in his upper neck!!! I still don't think that the Dr's believed me BUT there were witnesses who heard it with me and WATCHED him and THEY believed me. I went home knowing that there was nothing more that could be done in the hospital that i couldn't do at home.
Toward the end of our stay our pastor found out that we were STILL there and he called and got the church secretary to let out a shout for our need. One mother of MANY children came to the hospital with FOOD, TREATS but the best.....a foot massage......(brought tears to my eyes writing this) A FOOT MASSAGE!!!!!! OH MY!!! Then other BUSY moms brought food and hugs and love and listening ears....one, cried with me as she understood our son more than most! OH! To be understood!!!! Even got a visit from some old college friends that popped in for a visit....hadn't seen them in 23 years!!!
I will let you know that the two weeks of this past three were even harder than i could have imagined as a LOT of hard things were also happening in our lives OUTSIDE of Ethan's surgery. REALLY tough stuff. I explained many times over these past three months that it felt like i couldn't come up for air....i couldn't breathe as i felt pushed down every time i tried to come up for air. Those two weeks were some of the HARDEST of the past three months.
WHAT IS AMAZING???? ETHAN IS TOTALLY WORTH IT!!!!! I said that on my hardest days and i will continue to say it!!! I am going to write the incredible miracle of the past THREE days. SO, make sure that you read that too.
I am ALWAYS BLESSED, Connie for the crew!!!
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