Here he is at home after a sponge bath. He has had lots of visitors and well wishers. Thanks to everyone!
This experience has shown me (again!) the amazing love that God has for us and how he places angels on earth to help. We have been overwhelmed by phone calls, text messages, e mails, and visits from people who have taken our Ben into their hearts. We have had people bring over food, stuffed animals, cards, balloons, and an endless array of gifts to keep him happy. The most special thing for me however, were the teams of prayers coming from all over the world from people who knew somebody who knew somebody who knew us and heard about Ben and called to know how he came out of it. This touches my heart so much. It is so heartwarming to know that at a time that when we were dealing with so much, there were strangers praying for our guy.
The surgery went well but it was more complicated than what we had thought it was going to be. Because Ben is an otherwise healthy, fit little boy, doctors had thought they could get in with just 1 or 2 incisions. His appendix was hiding up very high under his liver and curled up, that was unexpected and made the surgery go longer than what we were expecting. Doctor told me that he didn't think the appendix was going to stretch all the way to where they needed it to, to the belly button and had thought they might need to create an opening at the side of his stomach. I had already said before surgery that I didn't want that to happen. I just think he has enough to deal with and an extra hole on the side of the belly doesn't help. Well, miraculously, ( I KNOW because of the power of prayer and faith) Ben just happened to have a really, really long appendix and doctors were able to create the stoma at the belly button, very inconspicuously. It was a total of 4 incisions.
The actual surgery was the easiest part of the entire ordeal. The worst was the NG tube. That was so traumatic. I'm still upset that they didn't use a local anesthetic or something to help with that. To have a little 4 year old with a tube up his nose and through his throat into his belly screaming "Mommy, I'm trying, I;m trying to be brave but I don't think I can!" is so difficult. Of course I couldn't cry in front of him but holding back those tears while he went on for 3 hours was so hard. He truly is the bravest though, I am so convinced of that.
Speaking of brave though, I must include some women that I met while I was in the waiting room during the surgery. They were 2 women whose sons were also in surgery, both of their boys have CP. One is a mother of a 15 year old who is in a wheelchair and despite having very poor motor skills has taught himself how to play video games and is so good at it that he is trying to convince her to take him to Japan to compete in gaming tournaments. I was so amazed by her description of his dedication to his craft. The lesson there was, there is always something you CAN do and that's where the focus should be. The second mother was a younger mother. Her son is three years old and she and her mother told me that when he was born the doctors told them that the best thing for him would be to unplug all the machines that were keeping him alive. He is quadriplegic, visually impaired, mentally delayed and cannot speak, and so they explained that he would have no quality of life. I was and am amazed by the strength and courage of these women to raise their baby and tell the doctors that they had no right to judge a human life. If God had given him life, they were going to see to it that this boy was taken care of. I met him after he came out of surgery and I was so touched by how proud of him they were. He had adorable p.j.'s on and looked like he was very loved. The lesson there was that I felt 100% humbled.
I am so grateful for my son, I am grateful for our trials, I am grateful for his accomplishments but most of all I am grateful that I don't wonder why anymore. I am human and when we received the diagnosis before Ben was born I couldn't understand why. I am healthy, so is Dan. I have never smoked, drank or used drugs (not that having done any of the above would be a reason but you know what I mean) I live off of green leafy vegetables, I am active and healthy, had had two healthy boys before him. And then all of a sudden. I couldn't get why, I wanted to know why. What had I done in my life to warrant this trial? What hadn't I done? Had I have been better, smarter, more faithful, something, would this not have happened? That was how I felt for weeks. Dan and I took part in genetic research, submitted DNA samples, read everything on the subject and wanted to know why. When he was born, those feeling subsided of course because he was so perfect. Just like every mother, I saw his perfections rather than imperfections but I still wondered why. Through the years I still have ups and downs but I don't wonder why anymore. It really doesn't matter and is of no consequence so it doesn;t take up any of my time. I have learned to just enjoy him. The hard thing for me these days are his AFO's or ankle foot orthosis, that will help him walk better. I am so apprehensive about them but only because up to this point this whole spina bifida thing has been something that we deal with in our family. People don't see his kidneys and don't watch us cath him or watch our bowel routine, so it's easy for other people to not even know he's dealing with something else. With the AFO's it will be a visible sign and being his mother, I just don't want him to be hurt or feel different. I know that the best thing we can do is to keep him as happy as he is knowing that his validation comes from inside. It's just new, so it's scary. I just have to say welcome to Holland more often.
* So I just read this and realized that it doesn't make sense unless you know the Welcome to Holland story. Here it is:
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Getting fitted for AFO's.
He's had two pairs before but never wore them because he hated them. Now, though with his body growing and getting heavier everyday, it is too much of a strain on his knees and ankles.
Ben was having a good time but I look sooo done and ready to go home. Kids are so much more resilient than we are.
Ben's kindergarten class performed The Little Engine That Could yesterday. Of course Ben had his fan club & entourage present for the big production! Daddy had to work. :(
Sleepy little stars.
Ben and Grampy have the same smile!
I found a foxy man with gorgeous hair in the audience. I think I'll keep him. (His chin is like this because I left my razor in the shower and he thought he would shave- ouch! I learned my lesson.)
