for a long while and so many things are happening and changing in our life!
The kids are growing and thriving, and everything is so "normal" around here that it can be amazing.
Yesterday I got two different emails in my inbox about "normal" that I thought I would share.
EMAIL #1NORMAL SYNDROMEHow to give parents a pre-natal diagnosis: I'm very sorry, I have the results of the genetic tests and they have confirmed our suspicions that your fetus is what we call ... Normal. Some people prefer the terms "Ordinarily Challenged" or "Normal Syndrome". The syndrome can be easily identified by a complete lack of any interesting genetic characteristics. I know this will come as a shock to you, but you should be aware of what this is likely to mean. If your fetus manages to survive the rest of the pregnancy and the birth, which is becoming more common these days, he or she will face some daunting challenges. Children who suffer from normalcy are prone to health and psychological problems. It is almost certain that the growing child will suffer a seemingly endless stream of viruses. They will frequently damage themselves, and sometimes others, from their excessive energy. Their relentless demands will put a strain on your existing family and, of course, your relationship with your partner will suffer, and possibly end in a painful and acrimonious separation. Any children you already have, even if they also suffer from normalcy, will be jealous of the newcomer and all their extra attention. Many siblings are liable to be psychologically scarred by the new arrival. I need hardly mention the financial consequences, although disastrous, they will be nothing compared to the emotional turmoil your life will suffer. After a while, you may be lucky and find they can be kind and loving young children. They may find some temporary happiness in things such as music, dancing, food or playing with toys. But if they survive early childhood, a Normal child is almost certain to grow into a Normal adolescent. Your years of sacrifice will be thrown back in your face as they become disobedient, wild and reckless. Unable to find happiness and contentment, they will treat you with contempt until they manage to leave home. Even then the suffering will continue as they will often return to try and extract money. They will blame you for their own faults and leave you bitter and twisted. They may well become criminals, over a quarter of Normals will have trouble with the law, many will spend time in jail. Many will have problems with alcohol or drug abuse. Normal marriages are often unhappy and short and over half end in divorce. Even if they become successful this is likely to be because of the often observed tendency of Normals towards excessive greed. The chances of them sharing their success with you are remote and they will tend to see you as an embarrassment. Finally, Normal people are likely to die before their time. 23% will die of cancer, 33% of heart disease. Hundreds every year in this country alone are so distressed by their condition that they take their own life. I'm sorry to say that many will have had a lonely, painful and pointless existence. I am afraid that Normal Syndrome is a genetic condition that affects every cell of the body, and so is impossible to cure. Termination is an option. Shall I book an appointment? Email #2Some Mothers Get Babies With Something More... My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said.
Mothers lie.
Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more. Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime?
I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.
As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you're ordinary. (OH DO I SO AGREE with this point HERE!)You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." (OK , I did have a choice so far but I am so tired of IEP's I could puke!) You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more.
You're a wonder.
Lori
Borgman is a newspaper columnist and author. You can find her at: _www.loriborgman.com_ (
http://www.loriborgman.com)
_______________________________________________
It was ironic and sort of necessary for me to have received both of these emails in my "spam" filter yesterday! I needed a swift kick in the pants and reminder that our family is as "normal" as the next one!
Eric, Colin and I spent all weekend visiting and falling in love (
OK only Eric and I and Colin tolerated him) a wonderful young man who I thought needed us (all of us). Come to find out I think we might need him a lot more!
We spent a lot of time discussing how this would affect our "normal" life, how it would impact our "normal" children, how " normal" this would look to the rest of the world. You would think by now I would not worry about things like this..... but I sometimes do.
I do live in my little world at the end of the lane, where I wake up everyday with more hugs, smiles than most people get in a whole week! There are tears, and screams too..... but we get to be excited about lots of things, little thing most people miss in life.
In the last week .... here are some of the things I have been so excited about....
- Colin can finally put more toothpaste on the toothbrushes than on the counter
- Melea wants to do her "helper" jobs and keeps asking me what she needs to do!
- Miranda wore her glasses for 10 minutes straight
- no one had diareahha or puking for 3 days straight in one week
- that Eliza started playing in the toiulet
- that Miranda reached her hands up at the same time all the other kids did this morning to want a hug from daddy
- colin didn't kick the ENT resident
- Jordan poured water all over the floor
- Colin put on a pair of earphones and listed to a DVD for 5 minutes
- Adrian made a hot dog by herself
- Colin signed a three word sentance
- My son can spit at me! (course now after working so hard to do this... we will work on where to spit)
- that Eliza can't spit at me yet!
- that I said something not directed toward Miranda and she signed that word anyways!
- that when I went of the field trip with Melea's room, she didn't cry or cling when I had to leave early!
- that daddy survived staying with two of the kids at the hair dressers!
- that Melea told me she had a tick! (GOSH I HATE THESE!!!!!!!!!!!! but she told me)
- Adrian did a 24 piece puzzle by herself!
- Colin hasn't made "pooey" on the floor in two weeks
- Melea only wants me to take her to the bathroom
- Adrian told me she peed on the couch!
- Melea told me Adrian peed pon the couch (thank heaven for carpet cleaner! & my little bissel)
- Adrian woke up happy and Melea woke up grumpy for a chage of pace!
All of these things most people might not consider "normal" due to my children's ages.... but they are normal for us........... and after I get the kids on the bus, and get my coffee... I think they are a lot more normal than most!
So sunday evening after our flight home from Philly. After spending 2 1/2 hours with my son in one of his unique sleeping postions that would make a contortionsist squeal! I spent a lot of time thinking about "normal" . We landed, I needed coffee (surprise).... and we went on our way to
Ironically later that evening we were all sitting at our favorite Mexican restaurant All of us, our family and everything we do know is as normal as the next guy.
It works for us, the fact that others think it is noble and send me emails like #2 means they don't see us that way. Others send me ones like #1 to remind me that children with special needs are just as important as "normal ones" or that "normal ones" have no guarentee anyways!
I guess I just look at this as one day at a time with an eye on where I want to be in 10 or 20 years with my children. We just all keep going and making slow but steady progress! I will likely rejoice in tons of things my children do! (that most parents never give a second thought about) but I do know what works for us and will work on teaching all my kids to be accepting of what works for others is just as "normal" as our way!
___________________________________________________
All I know as that as my whole family sat on the patio at our favorite Mexican restaurant.
We watched a group of "goth"
teenagers walk into the restaurant after they
politely stared and then waved nicely at our "motley crew of little ones"
Ironically Adrian leans over to me and says "mommy, why does that girl (though it was a guy) have so many things sticking out of her nose and the funny hair?" Then
Melea starts telling me "hair cut" and pointing to the young man.
It made me laugh to myself, and I tell them both.... "They like it that way, and it works for them and it is ok!
And I realize in my head that this is "normal" for them too!
(course there was an unsaid prayer to God at that moment for the continued fear of needles & pain,....and of course
Adrian's insane need to wear as many colors as possible at one time! )
