I told you I might write in here again; so here I am!
I just got the kids to do their homework: they are now in their rooms or in the family den, holed up with their books, notebooks, and computers. It is for the most part, quiet, which is rather nice (and quite rare for our place). You try to keep tabs on fifty-plus kids and just see how far YOU'LL go! Tain't easy! :)
I had a nice day off from work; other than Arjun, it was quiet until the kids came home from school. My wife got home at 3:30; she said there was a bad accident on the road home, so she was held up in traffic. She usually gets home about two-thirty or so, so I was getting worried when I saw that it was approaching three thirty and she still wasn't home. I then heard her van drive up, and my nerves immediately settled.
As I was saying in my previous entry, my kids are my life. Most of them are disabled; despite that, we try to treat them as normally as possible. It isn't easy at times because some of the kids have far from normal lives, like our daughter Jodie, and our sons Todd and Roberto, for instance. Todd and Jodie both have severe spastic quadriplegic cerebral palsy and are both profoundly retarded, with I.Q. readings of below 40 points; so learning for them is next to impossible at times or painfully slow.
As for Roberto, he has Down's syndrome, cerebral palsy, and autistic tendencies (although he hasn't officially been diagnosed as being autistic). All three of them can be quite a challenge, but underneath all their serious problems, they are still charming kids who can bring a smile to even the most hardhearted person.
We also have kids who are dying: our son, Johnny, has lived with Duchenne's muscular dystrophy for most of his life, and it has only recently started getting worse. Johnny is needing more in the way of help with every day living, and his breathing is starting to become affected, as is his heart. It is a scary thing to see Johnny struggling so, and we are worried for what the future might bring--and when.
Johnny has had to put up with a lot besides his MD: he has epilepsy (his seizures are finally under control after years of fear), and he also has had to live with learning problems. He is finally doing well in school (thanks to tutoring and after-school help), and his grades have improved (as has his attitude). It is as though Johnny has turned into a completely different person, and we are amazed at the Miracles that have been occuring in this young man's life on a regular basis. We are so proud of him we could just cry with joy! :)
We have a daughter (Rhiannon) who has cystic fibrosis, and her health has gotten precarious too. Just last month she had an episode of bleeding in the lungs; when she started coughing up what seemed like copious amounts of bright red blood, of course, we got scared out of our wits. She was in the hospital for a few days until the bleeding could be stopped (by medication), and she had to have extra thumps, to make sure that her lungs were cleared. Rhiannon's disease is terminal too, and like Johnny, her future is uncertain, too.
On the other hand, we have kids who are improving as they get older. Ronee' is a very good example of this. For years she struggled with her breathing (and severe allergies), and she was a regular visitor to the hospital's emergency department. Ambulance calls on her part were quite common, but now she has finally gotten her asthma under control, and she has recently come off all of her oxygen therapies.
Ronee' now only takes two inhalers (one in the morning, and again at night), and she is down to just one asthma pill. She does still carry her epi-pen, in case she should happen to have contact with insect stings or peanuts, two things she is still highly allergic to. She knows to stay away from the things that give her the most trouble; she does this just as a precaution.
Ronee' is also walking much better than she has been since she was first diagnosed (at the age of five) with having JRA. She walked on crutches for years; now, thanks to a necessary hip replacement, she is just using two canes, and she gets around so much easier. It is hard to try to keep up with her, and flares are not as much of an issue with her (she did have one just last week, but she didn't have to go to the hospital). It is incredible to see how far she has come on her journey to renewed health, and it is enough to make this father's heart burst with fatherly pride.
Our kids come from all over the world: Mexico (Roberto and Jeraldo), Italy (Mario), Guatemala (Monica and Enriquesa), Russia (Sergei), The Netherlands (Trude), Canada (Stephanie and Michael), Japan (Gemini), Sri Lanka (Arjun and Rani), India (Jameela), Africa (Kwame', Lightning, and Melizza), Malaysia (Sylvia), Romania (Janica), Germany (Johannes, or Johnny), Iran (Debby), France (Gisele), Vietnam (Anh Kim, Starlight, Sunshine Lee, Andre', Tri, and Tran), Korea (Sun-Hee, Summer Song, Camey, Tammi, and Jodie), the United States of America (Ronee' Le-Anne, Tanya, Dwerlina, Todd, Jo-El, Porter, Richard, Dianna, Rhiannon, Heather, Louise, Elise, Loueva, LaVella, Christiana, and Benjamin), and China (Megan and Michelle). Of course, I am probably missing a couple of the names here, but I think I did pretty good trying to remember all their names, which can be a Hurculean task at times! LOL
I don't know why we ended up adopting children with special needs, but once we started, it was as though God opened up a whole new world, and we were shocked to learn just how many children there are out there wh are in need of a home or a permanent family to call their own, or how many children are languishing in foster homes, hospitals, or institutions. I guess we did this because God knew that we were grieving the losses of our own three children Aron, L'Acadia, and Pierre, so He gave us children nobody wanted as a way to get over the hard times we were facing. He knew that we wanted a family, so He started giving us children that had no hope or future; the rest, as they say, is history, and now we are parenting an incredible fifty-three children!
My wife, Louisiana, has written three books about our family, and who knows? I may end up doing one myself, a book about our family from a dad's point of view. I have always wanted to do a book about my family, but my wife beat me to it. *grins*
I will go now; time to get the kids rounded up for supper. Tonight it is spaghetti and meatballs: I can smell the sauce from the kitchen, and the Italian spices are making my mouth water like Niagara Falls. My wife is a phenomenal cook, and she can cook just about anything you throw in front of her. I guess it is because she is Cajun; Cajuns are world-famous for their cooking, and my wife could teach these famous chefs a thing or two about good, old-fashioned, home-style cookin'! :) Take care, and God bless!
I like Bill's philosophy on life and think we all can learn a lesson for him. Bill doesn't see himself as disabled and he doesn't let disability keep him from doing whatever he wants. write on!
Karen
Bill is a phenomenal writer, and he has such heart and compassion, it just spills over in his caring words, and he really does explain the plight of severely handicapped children in a new light, that shows the inner beauty and charms of these poor children...
Louisana is fortunate to have such a good and loving husband..
Superb top drawer writing, word perfect with precise punctuation !
Love
Peter
The familiar lament of dual-career parents raising children is, "I just can't do it all." The Libra Solution provides an alternative - a more satisfying and sustainable work and life approach - to the overwrought modern day norm.
Let this coming of age story of a boy named Bean take you back to a simple time. Set in a small southern town in the 1960's, encircled by a river and gleaming white cotton fields.
