Something more...

This was an article posted by an online friend that really hit home. I know there are some special needs parents that read our blog, so I wanted to share this. It's one of the best articles I've ever read.

Some Mothers Get Babies with Something More
Lori Borgman, Columnist and Speaker


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 (according to the baby development chart on page 57, column two). 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 echocardiogram, 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 clichés 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. 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.”

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.

Not so alone...

There are times in caring for my sweet Aaron that both Rob and I felt so alone, so alienated from "normal" parents. Sometimes going to a clinic appointment was looked forward to, we fit in there. Everyone has something going on, and its their normal. One appointment I was able to sit on the floor with another tubie/TPN mommie and talk about our children. It was a nice conversation, we were able to celebrate the milestones that both our boys had made, and share stories that only a tubie mom cound understand. But should we have been here at all? Why our family? Why my baby boy? My husband is loving, loyal and will do anything to keep things smoothly sailing in our house, I do my best to love him and the kids as much as I can, we have a great marriage. Should we have the "perfectly healthy" child? Guess not. In reading some paperwork I have to say I agree with the statement below.

Wellbutrin Lawsuit Update: XXXXXXXXX, LLP continues to be contacted by a large number of mothers, fathers and family members of babies born with birth defects directly related to the use of Wellbutrin during pregnancy. It is important to remember that you are not alone, and the birth defects that your child was born with are not your fault.
Drug manufacturers have a responsibility to warn patients and doctors of the known risks in taking medications while pregnant. When drug manufacturers fail to warn consumers, they must be held accountable. The filing of a Wellbutrin lawsuit will never heal the emotional devastation of knowing that your child’s birth defect could have been prevented, however it can assist you and your family in the paying of medical bills, covering future healthcare costs and give you the satisfaction of knowing that you/we will not stand by and let a giant pharmaceutical company put their profits over the safety of American consumers and their families.

Im mad, no not mad livid, angry, sick and full of animosity towards GSK. Suggesting my child is worth a dollar amount is simply disgusting. GSK, you make me want to vomit. You are selfless, hurtful and most of a greedy. I hope there is never a day you will have to stand in my shoes. I wouldnt wish this for my worst enemy.

Michael XXXXXX, Managing Partner of xxxxxx, LLP, has stated, “Our law firm has represented thousands of victims in pharmaceutical side effect and recall lawsuit. However, as a father of four, this particular litigation [Wellbutrin birth defects] really strikes home. We intend to passionately represent the children and families affected by the manufacturer’s inability to warn the mothers of the potential for Wellbutrin induced birth defects when taking this drug while pregnant.”

Years ago...

I met a lady who was simply a miraculous woman. Over the years we've stayed close, she's been there even when I haven't been the nicest person to be around. In fact, there were lots of time that I took for granted her selflessness and didn't stop to say a simple "thanks". Amazingly she still is there! Wow, what a person. One day when I was having a bad day year she sent me a card...she took the time out of her day for me...can you believe that? Just because she cares. I'm beginning to realize how hard it must have been for her to love me and for me to unknowingly hurt her. In raising my own children I know she didn't have an easy job...even when she came home from working to care for me. I hope that one day I can be as good a mom as she was... or even half as good. Thank God for my Mom.

Our First Celebration of the year, our babies birthdays!

I cant tell you how thrilled I am that we were able to spend time with our family and friends and enjoy the miracles that we've see in our lives this past year. Rob and I weren't sure this day would come. Would out little boys brain be so damaged from the high Co2 levels? Would he ever be able to eat like the rest of us? Would w wake up to check on an alarm to find our angel passed to heaven too soon? The questions we have had this past year are so deep, there is no end. Every parent we've met along the way has a special place in out hearts. Theres the little girl born with an abdominal wall defect so severe she hadn't been able to leave the hospital in all the month Aaron had been inpatient... and then there was the scared mommy that offered to bring us dinner while her 6 month old sat unconscious on a vent, I guess we all have coping mechanisms.And then the kindness of all the sweet nurses. The ones that would care for our Aaron in our absence. At nights, we come to see him only to find him cuddling with one of "his girls" and being spoiled beyond spoiled, lol. Just to compare, lets do a then and now...

He looked so unhappy in this pic, kinda like he was saying, "I just want to be normal, make it easier for me mommie"

And, amazingly he was able to have cake for his 1st birthday!! What a dream for us, it couldn't have been a better gift than to see our guy be able to eat his cake!

And little Sarah....she loved her cake too. She has a habit like mom, she wipes everything up, she cant stand a mess! Little me, lol.

Lovin my guy and sharing some food with him....he looooooooves to eat!

Grace overseeing that everything is going well (she did great by the way!)

Little miss Ali found a love of carrots, and that's fine by us! Those little eyes are gonna be strong!!!

Aunt Lin, Uncle Dave and Pappy Charlie out with Miss Sarah....shes having a blast!!

Peek-a-boo with Aunt Lin!!!

Pool time for the big kids...I think Sarah was a tad jealous!!

What??!! Do I look like my daddy or what? I know do...now for Pete's sake someone get me some goodies!!!!

Amazing bump love bonding. I'm so blessed to have a great loving family that loves each and every child....from the moment they've know about them, long before they toot their first breath, they have all been loved.

Too tired to eat my Cheetos's....but they sure look yummy!!!

Ok Ok, enough pool time for Morgan and Grace.....they look like raisins!!!

AND>>>>>>> The kids yummy cake!!

Those little Suprises!

It seems like out little bun in the oven now isnt wanting to wait until August to break out! This past week had taken us all as a family through a roller coaster of emotions. No knowing what exactly is going on and the outcome is very hard for Rob and I. In the end, we have to let go and have the faith that God knows whats best for all of us and trust him.

Grace came home this week and I am soooooo thrilled to see her! I think shes grown already and it only been a few weeks. Shes really blowing my mind b how well she is doing in Karate and Jiujitsu, she really seems to fall right into it, kinda like tater tots and katchup, lol.

Ali....well, shes very sercure and I applaud her for that. But I do wish that my dear pudding head would chill out on her newfound love of covergirl makeup, Right now Im trying to convince her that we shoul save such pretty stuff for special times only. Yeah....she buys that **rolling eyes**

Jake is so smart. Every day he amazes me at the things he learns from school, He spent 30 minutes just last week explaining to me how many days are in 416 hours. When I asked how he knew that, his response was something along the lines of , "Well, I was borded watching that dumb movie you made me watch in the car and I figured it out then." The movie I Made him watch by the way was Ice Age....how cute, well at least I thought it was!

Sarah graduated to a toddler bed, and so far is doing really well. She likes to migrate into her sissys bed in the middle of the night though.But, shes off to a great start. Oh, and the word "no"? Shes got that mastered!

Aaron is now in his brothers room and doing well. I noticed the other night Jake singing him a night night song. Im amazed at how tender he is towards his little brother. I hope their realationshipis strong, they need each other.

My poor hubby was my unloading bag the other day. I'd had it...you know the kind of day you just wish had a restart button? Yeah, I had one of those! As soon as my hubby made it in the door my marbles hit the floor. Although he didnt understand 90% of what I said he listened and did his uber best to provide comfort when I needed it. Thats truly love....