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Thursday, January 31, 2013

25 Reasons You Know You Are A Special Needs Parent


I recently read a post on the Scary Mommy blog entitled 25 reasons why you know you're a parent.

 

I would to like to add a list of 25 reasons you know you're a special needs parent:

 

  1. You invite random strangers (therapists) into your house for the first time and before they get there, tell your children to quickly throw their crap around the room so it doesn't appear "too clean" because you don't want them to expect a clean house every time.
  2. Meeting a great therapist is like a 12 year old girl meeting a celebrity. There are tears, lots of hugs and phrases spoken like "you're so cool". You also make sure you to tell them multiple times throughout a session how amazing they are and you are thrilled to have finally met one.
  3. Racing through the grocery store, hollering please stop biting my face, pushing a big stroller and a little cart, shoving gluten free snacks in your child’s hands, while you watch them slowly go from quiet whining to total combustion, still managing to remember to grab deodorant (since you've been out for two days and have been using your husbands), and NOT cry when the checkout lady insists on talking to you about her grandson and how well behaved he is.
  4. Sitting in a doctor’s office for 3 hours at least a few times a month doesn't seem abnormal at all and now you just remember to pack every single portable electronic device in your house, a picnic basket full of snacks and also a full meal because you never know when 3 hours may turn into 5 or 6.
  5. When you have to wait anywhere else with your other kids they are always the best behaved.
  6. The sentence "Her eye is crooked again" is not spoken by the sci-fi character on the TV.
  7. The sentence "Her eye fell out" is not from a horror movie.
  8. A diaper bag is required for at least 5 years. It's probably the same bag purchased when your child was born.
  9. The medicine cabinet in your house full of syringes, liquids, and pills does not belong to a drug addict or your 90 year old grandmother.
  10. You have strange swinging contraptions hanging from the ceiling and huge jungle gym equipment in your living room.
  11. You go to the gym not to get fit, but simply to get out of the house. Then spend the entire time you are there checking your Facebook and bursting into fits of crazed laughter because you have "escaped".
  12. You believe that all baby items should come super-sized so you don't have to spend a gazillion dollars on special order items that are the same ones they sell at Walmart only bigger.
  13. Driving an hour and a half for a 25 minute appointment does not seem like a waste of time.
  14. An hour and a half drive is actually like a mini vacation.
  15. You start to actually love driving because when your kids are crying you can say "Sorry can't get to you. Mommy’s driving" and not feel bad.
  16. You celebrate pooping on the potty and reward it with high fives, good jobs, kisses, and candy. (Oh wait. That was also my 2 year old)
  17. You don't even bat an eye anymore when you check out at the pharmacy and the bill is $400. You just smile sweetly at the cashier and say "Of course. Do you accept credit?"
  18. The wrong look from a stranger in the direction of your child causes you to snort, snarl, and foam at the mouth. You have the world’s best stink eye.
  19. Sometimes punching people in the face just makes sense to you.
  20. If someone overheard your conversation with your husband while on a dinner date they would think you were from the CIA and speaking in code.   blah blah ...IEP. . . blah blah. . .ARD. . .blah  blah... MMHR. . .blah blah. . . DARS. . .
  21. LOL!  That last one was a joke. You don't go to restaurants!! And you definitely don't go there with your husband!
  22. Dates include wearing your best flannel pajamas, renting a movie on TV and falling asleep during the opening credits.
  23. Poop on the walls is not an emergency.
  24. You are somewhat proud of the title "that mom".
  25. You absolutely hate it when people ask you "what is your child’s diagnosis?" and are thinking of just handing out laminated business cards because it would be so much easier than explaining it.  And you forget how to spell the damn thing half the time so having it written down would be nice.  Plus they'd be handy in those times when someone has the nerve to look at your child wrong. While snarling, spitting and growling you could also hand them a business card.



 

Wednesday, January 30, 2013

My booger awards

“Sometimes crying or laughing are the only options left, and laughing feels better right now.”
Veronica Roth, Divergent    


So since I've recently been entered into the top 25 blog contestant on Circle of Moms I have been reading some of the top blogs.  Seriously, there is a reason why the number one blog on there has like 8 million votes.  It is hilarious!! I have absolutely no chance when it comes to these women and their humor. 

But, I still really appreciate everyone who has voted for me.  Keep voting!!! You never know, I could get 8 million votes too :) Plus, I just like the thought of winning something other than the booger off my 2 year olds finger.  Seriously...she presents it to me like an award.  "Here mommy!  Look what I have for you!"  She hands it to me like it's one of her prized possessions.

These mom blogs are about how funny it is raising kids.  How, ultimately, you do get a little crazy and find yourself doing things that you never thought you'd do.  Like responding "Thank you" when someone hands you a booger.

I find it interesting that there are not many funny blogs about raising a special needs child.  Oh, they're out there I'm sure and if you know of one please list it in the comments below or on facebook because I would love to read it.

I wonder if it is because no one wants to associate humor with special needs. 

There is nothing funny about a child or an adult that has a disability. 

And it's really not funny in the beginning when you can't even seem to drag yourself out of bed in the morning because the very thought of the weight now on your shoulders seems like it will crush you.

I don't think I really truly laughed until about a year ago.  I was so caught up in all that I couldn't do and all that she wouldn't do that I forgot to laugh and ultimately I forgot to live.
 
Now I see that those thoughts and sorrow were slowly killing me and if I kept on the path that I was on I was going to die a slow and agonizing death.

Now I see that I just took it all for granted and was so deeply entrenched in self pity that I couldn't appreciate the wonderful life that I had been given.

Now I see that it is possible to move past all of those things and learn to live again and subsequently learn to laugh again.

I've missed that. 

I've missed being able to laugh at myself.

It really can be funny. 

Having children in and of itself is a funny journey, but having a child with special needs has it's own unique humor.  One of my friends on facebook, Jill, posts about the funny things her 6 year old daughter says. 

Ella has anophthalmia and makes jokes about her blindness and prosthetic eyes.  Her mom posts stories about the humor in their life. Like her whole family panicking in a power outage at night, but little Ella remaining calm and leading her younger brother to the bathroom in the darkness grumbling under her breath that she "doesn't see what the big deal is?"  I love stories like that!! (Jill, I hope you don't mind me using you and Ella as an example.)

Yes, it can be sad sometimes, but it can also be hilarious and crazy in a good way.

Sometimes it's okay to laugh and it's okay to talk about the funny parts.  I'm glad I realize that now and I'm glad that I remembered what it's like to be funny.

Really all that I want to accomplish with this blog is to help the me's from 5 years ago out there in the world stumbling along in pain trying to figure this whole mess out.  If I can reach just one person who knows what I'm talking about and make them feel just a little bit less alone, then I have done the job that I set out to do.

Oh...and somehow writing about my craziness in all it's glory amuses me.

If you want to share my blog and you feel that it may reach someone and help them, please share it. Or if you just like it and want to share it, please do.

It's not about the amount of followers I get, or how many likes I get on facebook, or winning any awards (although all of those things are very nice and I do really appreciate them) (Vote for me!:)

It's just about telling my story, healing through telling it, and maybe helping somebody else.

Tuesday, January 29, 2013

Fasten your seat belt. This road may get bumpy.



It was sometime around this point in Oli's life that I decided I would learn braille.  I mean, why not, right?  My daughter was still in diapers, had about 4 teeth, could say one word and had just learned to sit up.  Why wouldn't I want to learn braille so I could start teaching her immediately something that blind kids don't really learn until they are about 5 years old(give or take-I'm not completely sure because Oli hasn't even started it yet.  So glad I ran that gauntlet 5 YEARS AGO!!). 

That picture of the crazy mom at the top of my blog, that is cartoon me. She has blond hair because what suburban house wife/stay at home mom doesn't picture herself as a smoking hot blond bombshell.  Or is that just me?  Maybe I watch too much reality TV.

I love how chic it is to say "housewife" now.  Much better I say that, than tell people I don't have a job or tell them I take care of my 3 children...all day...everyday...and I never get out of the house...or put real clothes on. . .or have any friends...

See how she's holding her head.  That's me totally flabbergasted by this whole crazy, loopy, bumpy path that is the road of a mom with a child with disabilities. 

Before I had kids my road looked like this:




It was smooth, newly paved, no potholes and was 100% safe.  I didn't even need a seat belt.

When I decided to have kids it looked like this:



Highs and lows, a few tiny pot holes, but I could still see where I was going. There were beautiful flowers by the side of the road and sunsets and rainbows in the distance.  (I'll bet you didn't know that I am also an artist. I will now add that to my resume of blog writer, magic Q-tip eye ball manipulator, Binky locating expert, and projectile vomit catcher.)

After Oli was born my road started looking like this:





Most of the time I can't even see where the hell I am going and have no clue where to turn next.  I just bump along, twisting, crashing through potholes the size of Connecticut, and try to avoid the boulders falling on my head.   A 5 point restraint race car driver seat belt is required for this road. It gives me a terrible headache. That's also why I'm holding my head.

And I'm holding it because I get crazy ideas like learning braille when my baby is 8 months old and I run with them full force, balls to the wall.  It makes my head spin so I'm trying to hold it on so it doesn't fly off while my mind is traveling at  500 million miles a minute. 



I might have a few issues, but I did learn un-contracted braille that year:)

I probably get my neurosis from my mother.  She learned un-contracted and contracted braille that same year.  Along with the numbers, math, and maybe music?  Basically the whole shebang of braille.  She was ready to open up her own little braille school and teach all the little blind babies of the greater Las Vegas valley.

Never underestimate the love that my mom has for her grandchildren.

Monday, January 28, 2013

What do I know? I'm only her mom.

Sweater, n.: garment worn by child when its mother is feeling chilly.”
Ambrose Bierce, The Devil's Dictionary    


After Oli settled down it was time to transfer her to a room on the pediatric floor for an overnight stay.  As they wheeled her upstairs I am staring down at my daughter's beautiful face.  My mom calls her a china doll because that's what her face looks like.  Especially when she was a baby and sleeping.  Her face was so peaceful. Chubby cheeks, little porcelain nose and a perfectly round head. 

The nurse notices me staring at Oli as she settles her into her new room and comments on how beautiful she is.

I know that she is beautiful but I'm a little taken aback by a stranger saying it.  I just wasn't that used to it.  She was very beautiful, but because of her eyes most people just didn't say anything.

"Thank you."  I tell the nurse.

"Let me know if she wakes up and seems like she is in pain.  She has some medication ordered for her, but I don't want to give it unless she absolutely needs it."  the nurse finishes up and leaves the room.

I was thinking "Oh good.  This nurse won't make her wait forever when she is hurting." I breathed a sigh of relief and settled onto the chair to watch TV.

A little while later Oli wakes up crying. I pushed the nurse call button and tried to comfort her as I waited.  The doctor had warned me that she might be a little more uncomfortable because he didn't put in a G-tube so there was no way for gas to escape.  Because the top part of her stomach was now wrapped around the bottom part of her esophagus (a fundoplication) she could no longer throw up, but she also could no longer burp.  The doctor told me that if the pain the reflux was causing her was worse than the gas pain then it wouldn't be too bad for her and she would adjust quickly. 

Looking down at her now, I started questioning my decision not to put in a G-tube.

The nurse finally comes back into the room and has to raise her voice above Oli's wailing.  "Yes?"

"Yeah, I think she needs some of that magic juice ordered for her.  I think she is in pain."

"Oh I think she's okay.  She's probably just hungry."

I stare at her incredulously.  Ummmm, no.  I think I know her. First of all I have taken care of this little person while she lived INSIDE my body for 9 months and second of all I have taken care of her OUTSIDE my body for 7 months. That is 16 months 17 days 10 hours and 15 minutes longer than you have taken care of her. Besides, I think by now I know the difference between a cry of pain and one of hunger.

"No.  She's not okay.  You need to give her some medicine."

The nurse gives me a disproving look and then leaves to get the medication.

I couldn't believe that she was actually going to argue with me!

She came back in the room and gave her the medication.  Throughout Oli's 2 day stay this was an ongoing fight with this nurse.  I'm not sure what the problem was? 

By the next morning Oli was much better and didn't seem to be in pain at all.  I got to feed her Pedialyte first which she inhaled (as much as I would let her.  I had to be careful that she didn't suck in too much air).  Then once she was tolerating her formula we took her home.

The surgery was a success and I was so happy that Oli was feeling better.  The doctor was right.  The gas pains didn't seem to bother her at all.  The only downside is when she gets the flu she isn't able to throw up unless the pressure is very great. So instead of feeling crappy and just barfing everywhere  and feeling better she dry heaves for hours.  It's no fun for her.

As for the nurses I'm not sure what the problem was.  They really should learn to trust parents and understand that they know their children.  I didn't want my baby doped up either but I knew that she was hurting and isn't that what the medication is for?

Somehow being just a parent is equivalent to being stupid in some doctor and nurses eyes despite your credentials.  What do I know? I am just her mother.

Even though I have not eaten, slept, or breathed, unless she has first, from the moment she was born.  I can't possibly know more than someone who has met her. . .once. . .for 15 minutes. . .and can't remember if she is a boy or a girl. . .



Sunday, January 27, 2013

Total meltdown commencing in 5...4...3...2...1

“There's no bitch on earth like a mother frightened for her kids.”
Stephen King




Finally after what seemed like hours of waiting in those little blue plastic chairs and watching cartoons on the Disney channel in the kids play room, the nurse called my name from the doorway. 

"You can go back and see your daughter now.  She's awake, but we just got her into the recovery room.  Normally I wait to bring families back until the kids have been there a little while, but since you work here I made an exception."

I thanked her profusely for letting me go back early, but then was wishing she had waited a little bit longer as I rounded the corner and could hear Oli screaming at the top of her lungs from the end of the room.  

I quickened my pace to get to her bedside and then looked at the recovery room nurse as she straightened out cords and tried to get her connected to the monitors.

"Aren't you going to give her some pain medication?"  I ask the obvious question when ones child has had surgery and then is screaming like they are still slicing off some major body part.

"Yes I'll get her something in a minute."

In a minute?  Can't you hear her pain?  This purple color is not the normal hue of my daughter's face. 

I know what it's like to be the nurse and have anxious parents breathing down my neck, but come on lady.  I understand that you are busy and it is obviously important that you straighten out these cords (for some reason unknown to me), but give her something.  I think she might be dying.

She finally untangles the last knot in the stream of medical cords and saunters off to get Oli pain medication.

By the time she came back I don't think I had ever seen Oli quite the color that her face was now.  I had no idea, until that moment, that human skin could turn that color.  Her face had a kind of red, purplish tint that only the truly pissed off baby can become.

Now I am quite familiar with it.  Now I know that when Oli turns that color I better get the hell out of her way in about 10 seconds because she may spontaneously combust.  Or try to bite, scratch or beat me to death.  Good thing my peanut is only 40lbs soaking wet and has yet to actually hurt me. ( She is usually very sweet. I promise... Except when she's not. )

The nurse gave her some medicine and Oli eventually quieted down and went to sleep.

"This is normal. Sometimes children have that kind of reaction to the anesthesia.  She should be better after a little while."  The obsessive compulsive nurse tells me.

"Okay."  I am thinking yes, I realize that, but it does not give me any comfort because I am watching my baby have a total and complete meltdown and therefore am well on my way to total meltdown phase myself.  Watching her scream louder than I have ever heard her scream does not in any way feel "normal" to me.

However, thank you for trying to reassure me.

I don't feel any better.

Saturday, January 26, 2013

Please don't let her arm fall off

“Sometimes beautiful things come into our lives out of nowhere. We can't always understand them, but we have to trust in them. I know you want to question everything, but sometimes it pays to just have a little faith.”
Lauren Kate, Torment

Fortunately because my two small children were in the car with us that cold day in January it ensured that my husband's enthusiasm for an adventure took a back seat. We made it to Oli's surgery appointment unscathed, unstuck and virtually un-traumatized.

It was scary riding with a driver who was unfamiliar driving in the snow on gravel roads in the middle of the desert, but Seth was cautious.  We got to the hospital 2 hours late to her appointment.  I had gotten a hold of the surgeon when we realized that we were going to be late and she told us to go ahead and come whenever we could.

They prepped Oli for surgery and the nurses whisked my baby girl off to the operating room shortly afterwards.  We were assured that Oli was in good hands and were sent to the waiting room. 

I had never been the parent of a patient before Oli was born.  One time I had to take Kekoa to the ER when he was 4 months old because of a high fever.  We were only there long enough to make sure he didn't have an infection and then left. 

This was nothing like that. 

I knew they were going to be cutting into my baby, however minor the operation was. 

THEY WERE GOING TO CUT INTO MY BABY!!!

I had been involved in lots of surgeries with babies before Oli, but none was my child.  My heart went out to all of the parents who had sat in those little plastic chairs before me.The parents that I myself, had sent to the waiting room when I was the nurse on duty the day of their child's surgery.  Many times I spoke the exact same words spoken to me that morning, "She's in good hands.  Everything will be fine." 

Of course there are no guarantees.  I knew that.  I was terrified. 

The few hours it took to perform the operation and get Oli into the recovery area were some of the longest hours of my life.  Oli has had a few other surgeries since then and it never gets any easier. 

Remember I am a worst-case-scenario girl.

I worry about everything from a complete power failure when my girl is still on the ventilator and unconscious down to worrying that the nurse didn't properly swab her IV port before injecting medication into it and subsequently she gets a terrible bacterial infection and her arm falls off. 




It's awful!

Luckily none of those things has ever happened. 

I want to trust people taking care of Oli.  I really do.  Most of me has to or else I would drive myself crazy, but this is my baby girl.  I can't trust them completely.  I don't think any mother ever does. 

Moms worry about our children the moment we realize we are having them.  It's not any more difficult, I don't think, when you have a child with special needs.  We are just given more opportunities to worry.  And we are given more opportunities to trust people and have a little faith in them.  Sometimes they let you down, but most of the time they don't. 

Most of the time my imagination is far worse than reality.

Good thing!! Otherwise my girl would defiantly be missing a few limbs by now.

Friday, January 25, 2013

Vision, Discrimination, and Different Identities

“We know what we are, but not what we may be.”
William Shakespeare



I've been thinking a lot about how hard it has always been with Oli because so often I feel helpless.

This week when I took her into the doctor and found out that she had a ruptured ear drum, I had another one of those moments.  A moment when I look into the eyes of my girl who cannot look back at me and then listen for her words and remember that my girl cannot speak to me.

I have a hard time if I dwell on these things too long because I look at her and I just don't understand.  I don't understand why she has a voice, but cannot tell me when something hurts.  I don't understand what it is like to live in a world of darkness and have to completely depend upon someone else to bring the world to me.

When I talked before about wanting to change her so I can know her better, I guess its not so much that I absolutely want to change her per say.  I want to understand her.  Really understand what it is like to live in her world.  She has an identity that I absolutely cannot identify with myself. Asking me to relate to my daughter amounts to essentially asking me to relate to a person who is of another race or someone growing up in another country. I absolutely have no frame of reference for experiencing her day to day life. As much as I would like to better understand and relate, I just will never be able to. 

It is even more difficult because my girl can't explain to me what it is like.  I dream of the day that I can kneel down next to Oli as she explores an object and say "Describe for mommy what you 'see' when you touch that" and she responds to my question with an articulation that paints a vivid picture in my mind.

I dream big. What can I say?

More realistically, I dream about the day that she tells me she has to poop or that the dinner I made tastes like crap.

When I talk about wanting vision for my daughter who has never seen anything, most of this is just a selfish attempt to have my daughters life become easier. Even if to her, that makes no sense. To her this is just the way life is, the same way my life has included having sight.

Mourning over the fact that I will never be a millionaire probably makes just as much sense as a blind person mourning over the fact that they will never see the sun.  Its fairly ludicrous if you think about it.  My open sadness displayed in front of her will do nothing but teach her how to feel sorry for herself and cause more feelings of helplessness.

However, despite knowing that some blind children and adults say that they do not see blindness as a disability nor would they wish for sight, as her mother I don't think I'll ever stop feeling sad about something that is outside of the norm.  Because in our society anything outside of the majority is usually met with resistance, discrimination, or looked down upon simply for the reason that I mentioned. People are just unable to identify with it and that in turn creates prejudice.  Or because it is different they feel sadness and pity. 

I have to remember to not feel sorry for her and it is really a true test of acceptance.

I have to be able to move past my own loss and learn to understand something I can't identify with. If I look at it in much the same way I look at someone from another race or country I am better able to put the whole thing in perspective.  I would never look at them and pity them. I would never think "oh too bad you're not white or American" solely based on the fact that I don't know what their life is like because whose to say my life is better?  So why do I do that to my daughter? 

At some point I have to move on and stop thinking about what might have been and simply accept what is. No better. No worse.  Just different than myself.  I will never understand what it is like to be Oli.  It still makes me sad because she is my daughter, but I don't want to feel sorry for her just because she is different.  That isn't fair to her.  She deserves everything I have to offer, but she doesn't deserve my pity.

Wednesday, January 23, 2013

An adventure with Seth




The morning of Oli’s fundoplication surgery (reflux surgery) I awoke in the darkness.  I turn over and glance at the clock. 

Uggghhh…4am.  We had to be at the hospital by 6:30 and it was an hour drive.  I shook Seth awake and then got into the shower.  A few minutes after I got in Seth knocked on the door.

“You’re not going to believe this Shannon.  There was a snow storm last night.”

“What?” Snow in Las Vegas.  Sounds like no big deal right?  The first time I saw flurries in the desert I laughed that they would even have the nerve to call the slightly thicker rain drops “snow”.  That wasn’t snow.  These people had never been to Iowa.  I had about the same amount of trust in my husband and his knowledge of snow as I had in the people of Las Vegas.  He was from Hawaii. 

I knew that it was probably just cold and raining.  At most it might look like snow falling from the sky, but would melt once it hit the ground.  We were in no danger of missing my daughter’s surgery appointment.  I forgot that in order to get to the appointment we had to drive over the “pass”. 

Pahrump sat higher than Las Vegas and in order to get there we had to drive over a mountain at 9,700 feet elevation called the pass.

As we left the house I wondered if we really were going to make it. Snow was actually sticking to the ground.  I had heard when we moved to Pahrump that the pass occasionally closed when it snowed up there, but that it only happened maybe once a year.  Surely it wouldn’t be closed the one day that we absolutely had to get to Vegas.  Surely our luck wasn’t that bad.

It was.

As soon as we reached the base of the mountain I could see police lights directing people to turn around and go back. 

I looked over at Seth who was driving. “What now? It’s going to take a month at least, to get another surgery appointment.”

“We’re going. I will get her to this appointment.” He says with determination and a look of excitement in his eyes. 

Oh no.  I’ve seen that look before.  That look that comes from a man who loves off-roading and driving through the back desert.

“Are you serious?  The gravel roads are going to be bad.  I think we should just call and cancel.”

“Nope. Don’t worry.  I’ll get us there. No problem.”

I am very worried. 

Seth likes a good adventure and his adventures usually end up with us being stuck somewhere.  I have been on many of these “adventures” with him.  I have been stuck in the desert overnight, in the mud, with nothing to drink but cheap beer and coyotes circling us looking at my little dog like a quick and easy meal.  I have been stuck 5 miles from the lake, with a flat tire and no jack, no one around for miles, for hours in 110 degree heat, with nothing to drink but cheap beer.  Don’t worry.  We always had beer.

These are just a few examples.  Others include motorcycle trips in freezing weather and extreme heat when I have been totally convinced I was going to die. 

I know Seth’s idea of an adventure.

This could end badly.

Monday, January 21, 2013

The Special Mother

It is not until you become a mother that your judgment slowly turns to compassion and understanding.
-Erma Bombeck

I read this when Oli was about 6 months old.  I thought that it reflected my life back then, but now as I reread it I have an even greater appreciation for what Ms. Bombeck is saying.

THE SPECIAL MOTHER -by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint.. give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint Matthew."

"Finally He passes a name to an angel and smiles. "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

The angel gasps - "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see... ignorance, cruelty, prejudice.. and allow her to rise above them. She will never be alone. I will be at her side every minute of the day of her life, because she is doing My work as surely as she is here by My side."

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Sunday, January 20, 2013

Getting rid of the reflux

“While we try to teach our children all about life, our children teach us what life is all about.”
Angela Schwindt

Finally when Oli was 7 months old we made the decision to surgically fix her GI reflux.

I could no longer watch her struggle to keep her food down.  Despite thickening her formula, a strict regimen of reflux medication and eating baby food, the reflux was not improving. 

We had to wait several months before making this decision because she didn't fit into her GI doctors normal category of surgical patients. She was still gaining weight, growing, was at that time still sleeping, and was not screaming most hours of the day. The exact opposite of most of his patients. 

He kept putting off the idea of surgical intervention until one day when I brought Oli in for her monthly check up.

"How is she doing?" He asks quietly. He was a tall, gentle, soft spoken man with an awkward personality.

"Well not to good. This cannot be normal." I tell him. Frustrated with her lack of response to his treatments, my goal today is to show him how miserable it was for her.  I laid Oli face down on the crisp, white exam paper. 

"Now just watch." I say as I encourage Oli to lift her head.  This was an ongoing struggle for her because of her lack of visual motivation,. But also because every time she exerted any abdominal force whatever was in her stomach seemed to become pressurized and shot out her nose.  As he is looking down at Oli she performs right on cue.  A thick stream of chunky old milk, tinted green from her lunch comes out her nose.

"This happens every single time I put her on her tummy. You have to do something." 

"Yes okay. I guess it's time to look into surgery." He relents.

"Great. I know a pediatric general surgeon who I'm comfortable with. I'd like him to perform the surgery because I know he won't put in a G-tube unless she absolutely needs it. I don't think she needs one and he agrees."

 A few weeks later Oli had the surgery. She did not need the G-tube.  I was happy that I had found a doctor willing to listen to me and not just put one in, as was the general practice. 

One week after the surgery she began sitting up and was finally comfortable lying on her tummy.

Saturday, January 19, 2013

I still remember how you made me feel.



Despite my negative experience with some of the doctors when Oli was born there was one more nurse who would make a profound impact on my memories of those 4 days in the hospital.
Her name was Sharon and she was my labor and delivery nurse.

She was a little bit older than me with exceptionally long, dark blond hair.  She seemed to be just a step out of time with today and wore her bangs in a feathered style around her face.  She was very sweet and one of those warm, compassionate people who make you feel like you've known them forever.

She encouraged me through out my labor and didn't even bat an eye when I threw up moments before Oli's birth.
"It's okay. Happens all the time." She reassures me, even though I am completely mortified having displayed my dinner to her and my OB/Gyn not to mention the NICU doctor I worked with.
 After Oli was born she let me spend a considerable amount of time with her before taking her to the
nursery. She even apologized when she finally laid her in the bassinet to wheel her down the hall.
"I probably should have taken her down 20 minutes ago since she's a little early, but it's so important to bond with your new baby.  Besides, she looks perfect."
 
Two nights later as I'm sitting on the hospital bed I hear a faint knock at the door.  Sharon peeks her head inside.

"Mind if I come in?"

"No. Please, come in." I'm nervous as she sits down on the end of the bed and am wondering if she heard about Oli.  It quickly becomes apparent that she has when I see her eyes fill with tears.

"Oh Shannon. I'm so sorry. One of the other nurses told me about your baby. I just couldn't believe it."
 
"I know. I'm still in shock. Thank you for visiting us."
 
I'm trying to control my own tears now.  Not just because I am again reminded of all that has transpired in less than 48 hours, but because I'm overwhelmed by the amount of empathy radiating from this woman who was a stranger to me two days ago.

"Do you need anything? Can I help you in some way?"

I just gave her a hug, told her thank you and assured her that it was okay and I would be fine.

I should have told her that the simple act of having the courage to walk into my room, cry with me and tell me she was sorry had done more for me than she will ever know.
 
I wish I would have known then, how that moment would  make me feel 5 years later.

Friday, January 18, 2013

A young nurse



As Oli began to eat baby food I  realized that her GI reflux, which I had been assured would dissipate when I introduced solids into her diet, did not diminish at all. The only difference now was that the things coming out of her mouth and nose were colorful instead of milky white.
 
When I think about her reflux I remember a young nurse assigned to us in the mother baby unit in the hospital.

It was a few hours after Oli was born and I was finally asleep. The nurse came in to check on us and woke me up indicating that something was wrong with her.  I sat up and saw her turning Oli onto her side as she gasped and snorted through a nose full of milk.

"She is spitting up pretty bad.  You have to keep an eye on her and keep her on her side. Here, use this to suck the milk from her nose and mouth."  She says as she hands me the little blue bulb I would become very familiar with.

Although this is fairly common and happens to newborns something about the way she looked at Oli that night sent alarm bells ringing through my heart.  She had that look in her eyes of a nurse who knew something was wrong, but couldn't quite put her finger on it.  The way she looked at me as she turned and switched off the light said more than her words could have expressed.

I'm concerned about your baby girl. I'm young and intimidated because I know you are also a nurse, but look at me and recognize that something is off.

Of course, I was still deeply submerged in denial and ignoring those alarm bells. I wouldn't find out until the next day that Oli was blind and I wouldn't know for another three years that her reflux was linked to another devastating diagnosis.

I just smiled confidently, tucking my covers under my arms as she walked out of the room and assured her that I would watch her closely.

I wonder if that nurse heard later that her instincts were correct?

Thursday, January 17, 2013

You want to put WHAT in my mouth?

"Children aren't coloring books. You don't get to fill them with your favorite colors.”
Khaled Hosseini


One of the most difficult things I ever had to teach Oli was how to eat solid food. 

Seems like a pretty simple thing doesn’t it? 

Just open up the little jar of green, orange, or tan puree.  Get the spoon ready.  The baby, at this point, is watching in anticipation because they probably know what is happening. They get that look of excitement on their face like, “Really? It’s my turn?”

Usually by the time the baby is old enough for solid food they have been watching big people eat for a few months and know what to do.

See food.

See spoon.

See mommy scoop up food.

See the spoon coming towards mouth.

Greedily open mouth as wide as possible.

Get food in mouth and then immediately insert fist in mouth too. 

Because really, what goes better with baby food than baby fist?

 
At least this was my experience with my son.

I’m sure you spotted a few obstacles that I encountered when I attempted this technique with Oli.

I got the baby food jar out and the little rubber spoon and set them on her tray. I opened the jar and had the camera ready to snap the classic baby expression that comes with the first bite of real food.  I scooped up the green mush, brought it toward her face and…nothing.

My face fell when I immediately recognized my mistake.

I put the food up to her lips and watched as she clamped her mouth shut when she realized that I was trying to put something in there.

“It’s food Oli. Food like mommy and daddy eat.” I gently try to coax her into opening her mouth.

 Nothing.

My baby had absolutely no frame of reference for the word “food”.  She’d never seen people eat, had no idea that this was something people do, and had no clue that she was supposed to open her mouth and chew when I spoke the words “food” or “eat”.

When Seth came home that night I greeted him at the door with a bewildered look on my face.

“She doesn’t understand what food is. She doesn’t know that she’s supposed to eat. All she knows is the bottle and milk. The spoon and baby food feel nothing like these.  How do we teach her to eat?”

Seth just shrugged his shoulders and gave me the reassured look that only a father who has no idea of what to do, but is confident he can work it out, can give.

“We just do. We have to show her.”

Over the next week I tried to do just that. I tried to show her that I ate food and did not drink from a bottle.  I would take her little hand and raise it to my face as I ate. I let her feel the fork or spoon layered with food as I raised it to my mouth, feel the motion of my jaw as I opened and closed my mouth and then chewed. 

Then I would sit her back in her highchair and attempt to feed her again.

“Come on Oli. Open your mouth just like mommy does.”

Nothing.

Eventually I was able to squeeze past her tightly closed lips and get a small amount on her tongue.  She immediately tried to spit it out and stuck out her tongue. I quickly jumped at this opportunity and put a spoonful on her tongue. Unable to spit out the entire glob she was forced to close her mouth and got a chance to taste it. She realized that it tasted pretty good, but then she thought that that was the way she was supposed to eat.  Every time I fed her she would stick out her tongue and expect me to put food on it. This technique soon became frustrating for her because she never got much into her mouth and most of it ended up falling off and onto her tray.

I was frustrated and again met Seth at the door after work.  This time with an exasperated expression.

“I don’t know what else to do.  This is not working and I’m out of ideas. Tomorrow, it’s your turn to try.”

“Ok.” He answers with that confident look on his face again.  But this time rather than finding it comforting or endearing I just fine it annoying.

I’m thinking, “You think it’s going to be so easy and I’m going to laugh when you figure out that it’s more difficult than you realize.”

The next night I get everything ready for Seth’s feeding attempt and get the “I told you so” look on my face.

He sits across from Oli and then does something completely unexpected.  He takes her face in his hand and gently pry’s her mouth open and puts the spoon inside.

“Open your mouth Oli.” He says as he gently taps the spoon against her lips and then opens her mouth for her.

At first the food comes right back out being thrust onto the tray by her tongue, but after a few more attempts she starts to open her mouth on her own.  Soon afterwards all we had to do was ask her to open her mouth and touch her lips.

Apparently his interpretation and my interpretation of “We have to show her” were completely different.

Thanks to Seth’s straight forward attempt to show her, my girl learned how to eat.

 

 

Tuesday, January 15, 2013

Why Is She Different?

(This is just an idea I was thinking about for a children's book.)


Why is she different?
Mommy can you please tell me why.

She can’t stop time,

turn invisible or fly.






Why is she different?

I don’t really know?

It’s not like she’s purple

or has hair that can glow.






Why is she different?

People ask questions and stare.

She doesn’t look magical

so why do they care?





Why is she different?

Maybe my teacher will tell,

why people feel sorry

 and think she’s unwell.




I sit nicely in class,

but then raise up my hand.

Why is she different?

I don’t understand?





The teacher smiles sweetly

and then tells me to sit down.

Maybe she thinks I am silly

And just clowning around.




I go home to my parents
 
who are talking in the hall.

I ask, Why is she different?

But they don’t hear me at all.




This scene is familiar.

Sometimes they don’t see,

that I want to know why,

but they don’t notice me.




I feel kind of confused

when I hear letters like I-E-P.

And what in the world

is an  A-R-D?

 



Why is she different?

I never did find
a good enough reason 
to a question of that kind.




Still to this day

l’m not exactly sure how.

I just know that she's my sister

and I don't question that now.

 

 

 

I thought I was the only one.


 


I began to think that all of the feelings in my heart about my daughter were terribly wrong.  I was a loathsome, despicable mother for not just accepting who she was and continuing to battle with thoughts of alternate realities.

I began to hate myself.

 I no longer believed that God had given her to me for a reason.  Why didn’t He give her to an extraordinary mother who could just deal with this unexpected twist and not ritually beat herself up about what was wrong. 

I felt small and worthless.  Tired and overwhelmed.  I felt like I was sinking on a slow leaking ship. I watched all of the other passengers confidently leap to safety while I remained steadfast, determined to somehow repair the damage or die trying.  Everyone else was moving on, but I just couldn't.

I loved her.  I knew that I loved this little girl with all of my heart, but hated the fact that she had a disability.  More importantly I hated that I hated that she was different. 

I felt like I was all alone and that I was the only mother in the world with a special needs child who had experienced this sense of loss. I felt like I was the only one who grieved what might have been.  Although I had all of these feelings in the beginning, as she got older they only intensified.

The weight of this emotional load began to get heavier and I grew weaker.

Monday, January 14, 2013

Roller coaster




 

Each day came with an anticipation of ways to fill the day with two young children and ended with a feeling that I wasn’t doing enough.  My mind was full of contradictions and confusion. I looked forward to going to work, but hated taking care of other people’s babies when mine seemed to need so much. I liked to stay at home with my kids, but I wanted to get out of the house and try to focus on something else.  However nothing seemed to be able to tear my mind away from focusing on what I should be, could be, or would be doing if things had turned out differently.

Oli was actually a very happy and easy baby.  When she learned to smile she smiled all of the time. She started to coo and babble, giggle, reach for toys, and bounce in her bouncy seat.  She seemed to be developing as a regular baby despite her blindness.  By the time she was 5 months old and meeting her developmental milestones I wondered if maybe the doctors were wrong.  Maybe despite all of her quirks she was actually pretty typical.  I still worried about her, but I had a little bit of hope again that her blindness would be her only hurdle in life.  I was slightly more comfortable with the idea of her disability and even began to enjoy hearing stories about inspiring blind adults and children.  I would think, Yes, Oli can do those things too!  

But then I would remember that the specialists had warned me that the developmental gap between her and other children would only widen as she got older.  My life had become a series of these highs and lows.  I would just reach the top of one peak only to come crashing down the other side.

 You see I was on a roller coaster ride and I couldn’t figure out how to get off. 

Sunday, January 13, 2013

A dark and lonely road


“The worst part of holding the memories is not the pain. It's the loneliness of it. Memories need to be shared.”
Lois Lowry, The Giver

 
As we left the doctor’s office I picked up my sweet baby Oli. I picked her up amongst all of the questions and uncertainty that surrounded her.  I held the top of her head to my face and inhaled the smell of fear that came with her.

Oh Oli, what am I going to do?  How am I going to get through this?

We drove back home and again the isolation of that house surrounded me.  Oli was three months old now and it was time for me to go back to work.  I desperately needed to get out of that house, but at the same time I was afraid to leave her.  She had become my whole world.  Every moment had been consumed with thoughts about her blindness and how I was supposed to help her.  Every night I was scouring the internet for information on how to raise a blind child.  I had even purchased a few books, seeming to be about a 100 years old

There should be more updated books on this subject. If the child on the cover is sporting extremely short cotton shorts and his mom has the feathered Farrah Fawcett hair, the book is probably a little bit dated.

However old, these books accompanied me to my first day back to work.  I sat at the table in the break room with a strong cup of coffee and my feet propped up on a chair reading this musty smelling book.  Topics included: how to encourage your blind child to crawl, encouraging your child to explore their environment, the importance of providing your blind child opportunities to touch different types of textures.  I sat there reading this book while my co-workers chatted and laughed around me.

I was no longer one of them. 
Could they see the pain in my eyes as I tried to laugh with them?  Could they hear my heart breaking when I stopped to look at recent photographs of their children tapped to their lockers?  Did they notice my annoyance when they tried to talk to me about mundane things? 

I wanted to shout, “Didn’t you hear? My child was born without eyes! Why are you afraid to ask me about her?  Why are you so scared to congratulate me?”

Not all, but a lot of people at work simply ignored the elephant in the room and said nothing.  This hurt more deeply than being asked what I had shoved into her eyes.  I wanted someone to acknowledge my pain.  I wanted someone to take me by the hand, lead me away from the isolettes and ventilators and just hug me.  Feel my pain with me. Cry with me.

As my break ended, I closed the book and silently walked back into the NICU.  I peeked under the blanket of a tiny preemie lying in her bed.  Born addicted to drugs, this tiny baby was screaming in discomfort.  Her mother was nowhere to be found. 

Didn’t this mother understand what a precious gift a healthy baby was?  Didn’t she appreciate that she had somehow drawn a lucky card in the genetics department and had given birth to a baby without a disability?  Why would she damage her child by doing drugs during her pregnancy? Did she have any idea how much I would have given for my girl to be born without complications?

I was beginning to get even angrier. 
This was a very dark and lonely road that I chose to travel down.