Tag Archives: kids

Oli’s Genetic Library

12 Mar

In the summer of 2009 I got another phone call that I won’t forget. I remember exactly where I was sitting, what I was thinking and what I did after I hung up the phone. It’s just like when people remember where they were when a certain big event happened. JFK’s death…I’m not that old. How about…Kurt Cobain’s death and when I heard that they declared OJ Simpson innocent of murder. I remember exactly where I was when I got the call telling me of Oli’s genetic diagnosis.

We had some genetic testing done for Oli a few months earlier to see if she had a particular gene deletion. There are a couple of different genes responsible for eye development in a fetus. So it would make sense that one of these genes might be missing and caused her lack of eye development. She also had other things going on so it was more likely that it was a gene problem and not just a random occurance. Which, sometimes, it is.

These tests can be extremely expensive and if you don’t know what you’re looking for, you end up wasting thousands and thousands of dollars testing a multitude of different genes. You can’t just go into a lab and say “My baby was born without eyes, draw her blood and figure out the problem.” Number one, they will look at you like you have lost your mind. Number two, regular labs don’t run these kinds of tests. It has to be a specific lab and usually they are doing these tests to further their research.

We got lucky that the Albert Einstein Medical Center had some money and was willing to test Oli for 3 different gene deletions. (I think it was 3, but I only remember the names of 2.) SOX2 is the most common deletion in microphthalmic and anophthalmic children. This is the one they tested first. OTX2 is another one that is less common, but also causes micro and ano. Oli is missing OTX2.

(Kekoa is watching me type this and wants me to add “Oli is wonderful”. OLI IS WONDERFUL!! Kekoa you are just too sweet.)

Before I tell you about that phone conversation I want to explain one quick little thing so it makes sense. Oli has all 46 of her chromosomes. They are all present and accounted for. Imagine that the chromosomes are bookshelves. The GENES are the BOOKS on those chromosomal bookshelves. Oli has all of her bookshelves. Oli is missing some of the books off of her bookshelves. Notice I put “some books”? Yes. Multiple books. Not just the one titled OTX2. She is actually missing around 20 books off of her shelves. Bookshelf number 14 to be exact. Some book thief came during the peak of her fetal development and stole 20 books off of her bookshelf number 14. Bastard!!

Actually…that’s not how it happened. Those genes were already missing off of the ONE egg or that ONE sperm when she was conceived. What are the odds? About 5% according to her geneticist. We don’t know who it came from. The sperm or the egg? I’ll blame the sperm. The female egg is the epitome of perfection. Those sperm have been the cause of a whole host of problems throughout the history of evolution. War, famine, and STD’s. How about the invention of golf, ESPN or the Harlem Shake. Can I blame those on the male species?

Most of these books that she is missing have unknown functions. Like book number 63 might be responsible for something, but we just don’t know what? Maybe it did something thousands of years ago during the evolution of humans and we just don’t need it anymore. But… there is sits on the shelf, acquiring dust with a random title like “Fins” or “Hairy backs”. (Some people are still reading this particular book.) Or maybe book number 13 does something like provide the normal pace for hair growth. Which would explain Oli’s VERY slow growing hair. I have only barely trimmed it. Once. 4 months ago. I’m not sure if this is why her hair grows slowly, but I’m guessing it has something to do with it.

Sooooooo…that’s the deal with Oli’s library. Pretty interesting, huh?

Next I’ll tell you the story about the phone call.

Tags: , , , , , , , , , ,

I Suck At Being Pregnant

10 Mar

My baby, Ginger turned 3 years old yesterday. 3!! I can’t believe she’s not like 20 by now! It’s almost hard to believe there was a time in my life that I didn’t want one more baby.

The day after we found out that Oli was blind, I turned to my husband and said “Well that’s all folks! We have hit our limit! Time to turn in our baby making equipment.”

It’s hard to remember a time when Ginger wasn’t just hanging around the house, laughing, singing, and trying to be the center of attention.

When your baby turns 3 I hear that a lot of people get asked “Are you having any more?” I only hear these things because I have NEVER been asked that question. Rather, my family pleads, “Please. For the love of God. Pleeeeaaaase don’t have any more!”

You think it’s because I have Oli right?

Nope.

It’s because I suck at being pregnant.

I mean I TOTALLY suck at it!!

I’m uncomfortable and sick and my back hurts and I’m grouchy and then I’m happy and I cry a lot and I’m tired and I’m paranoid and then it starts to feel like things are going to just fall right out of my girl parts and then I just start bitching at everyone.

Every once in a while (like maybe once every pregnancy) I love it. When the baby kicks I think “Wow! This is the coolest thing ever!” But, then I get kicked in the ribs or down in the no-no region and it feels like a foot is going to poke through down there and then I’m back to “Nope. This is horrible.”

I know that there are going to be some moms that read this and think “Well, I just don’t understand what she is talking about. I love being pregnant.When I’m pregnant I feel like I’m floating on air and riding on a unicorn surrounded by butterflies. I don’t even mind being sick and when I throw up I think that it’s amazing because it’s like I’m throwing up a little bit of heaven wrapped in nature’s love.”

Blahhhh….

Those moms might want to stop reading this post at this time because I’m about to bitch about it a whole lot more.

And then…then… you’re expected to give birth to them. Like being pregnant wasn’t torture enough, then you have to get them out of your body.

Oh. My. God.

It’s like something from a gruesome horror, alien, science fiction movie.

I had my 3 babies naturally. And by “natural” I do not in any way, shape, or form, mean that I had them drug-free. Oh HELL NO!! That’s just crazy talk. However, there did not seem to be enough drugs in the world for me not to feel completely mortified each and every time.

I mean that my doctor forced me to have them come out of my…you know where. (I hear that a C-section sucks even more so I’m glad that I didn’t have to do that.)

Before I had my first baby I was hoping that there was a way that I could get my doctor to just knock me out completely, do whatever he had to do to get the baby out without my knowing how he did it, and then just wake me up with a beautiful little baby in my arms.

Apparently they no longer birth babies this way and my doctor was in no mood for accepting my sobbing pleas or my attempts at bribery.

Soooo….I found myself at 38 weeks pregnant with my first child, lying on a hard table with wings attached to it, my legs propped up in the wings, exposing my nether regions to the entire audience, with a big Ziploc baggie thing under my bum, staring terrified at my doctor who was wearing a pair of safety goggles, SAFETY GOGGLES!, and a big hazmat looking plastic mask.

OH MY GOD!

Just WHAT is about to happen?

I vowed right then that I was NEVER going to do this again.

But, I became a mom moments later so my forgettery kicked in. 17 months later I found myself in the exact same position thinking the exact same thing.

I’m never doing this again. How did I forget this part? This is awful!

It’s a good thing that childbirth comes with a quick forgetter when it comes to that part.

Otherwise my son would be an only child and I would be missing the other 2 absolute best, most wonderful parts of my life.

Tags: , , , , , , , ,

Oli’s Prosthetic Eyes

6 Mar

Today Oli’s daddy drove her to Dallas to get a new pair of eyes. Every 3-6 months Oli sees her Ocularist, Randy Trawnik, and he makes her a bigger pair. Because she has anophthalmia (missing eye) on the right and microphthalmia (little eye) on the left, her entire eye structures on both sides are underdeveloped. The goal of the prosthetics are to increase them in size each time she gets new ones. It therefore stretches out the sockets and it makes the eyes bigger. Her left eye is almost at normal size due to intensive conformer therapy (I use conformers, painted conformers, and prosthetics interchangeably)

Here are some pictures of Oli’s prosthetic eyes. If anyone has any questions about them, please ask. I’d love to answer any questions you may have.

These were some of her first peg conformers. Remember “OMG! What did you stick in her eyes!”? Well, these were the awful ones prompting that response from people.

picture050picture051

This is one of the first painted conformers that she got. Only the iris was painted because we needed to leave the rest clear just in case she had any light perception. Until we were absolutely sure that she didn’t it stayed clear. Now we know that she doesn’t see anything at all so the whole thing can be painted.

picture053

These are some of the last ones that her Ocularist in California made her before we moved to Texas. They were getting really thick because the socket was stretching so much and it became deep. The conformers had to fill most of that space so they wouldn’t fall out. Also because they still needed to push against that tissue at the back of her socket so it would continue to stretch. She eventually had a surgery last year and she got an implant in that right eye. Now the conformers don’t have to be so thick.

picture052

picture055
picture054

These last pictures are of her custom fit prosthetics made here in Dallas. Her Ocularist puts her to sleep once a year and takes molds of her eyes so he can make them fit exactly in the shape of her eye.
picture049
picture047

picture048

Tags: , , , , , , , ,

Don’t Put Me In The Room With The Big Comfy Couch!

5 Mar

When I approached the information desk and made eye contact with the woman behind it I must have looked a little “frazzled”. When I asked her if Oli was out of surgery yet she must have sensed my panic, noticed my tightly clenched fists, or saw me on the verge of crying because she immediately went to check for me. She even bypassed pretending to know how to work the phone or computer.

She came back a very long 5 minutes later and said “No. She is still back there, but they will be done soon. She’s doing just fine.”

“Oh okay. Thank you. I knew everything was fine, but you know…..well, I had to check because you see, she’s blind and autistic and has this rare gene deletion, so we don’t really know a whole lot about it and this gene caused her eyes not to develop so she wears prosthetic ones and she started having seizures in 2011 and…..”

Crap. I lost her.

She’s “working on the computer” now and trying to politely get me to go sit down.

What?

You don’t want to hear Oli’s life story?

Are you sure?

I can tell it 2.5 minutes if I talk really fast and run all my sentences together.

No?

Whatever. You’re missing out on a really good moment of mommy-gone-mad. Especially since I didn’t sleep last night. It’s an even better show when I don’t sleep. I’m much more likely to cry and then burst into fits of uncontrolled laughter.

Oh well. Your loss. That’s some quality entertainment your missing out on.

images (17)

You better believe that I sat my butt down in the nearest chair and did not move until that pager lit up and vibrated.

I finished my much needed cup of coffee, checked my Facebook (thanks for the prayers guys!) and waited.

6 hours later…..no, it wasn’t really that long. It just felt like it. They called my name and walked me back to another little waiting room.

This one was WAY better. It had a nice big squishy couch, a table and chairs, a little TV….

Wait!

No!

I don’t want to be in this nice room!

This looks like a “bad news room”!

You never give parents bad news in uncomfortable chairs. That’s just plain mean. You give them bad news in rooms with big comfy couches and little TV’s. Rooms with a circular table and chairs for having “discussions”.

I want to go back to that other room! I want to go sit in those crappy vinyl covered chairs with the fish again! NEMO! HELP!
images (16)

“Make yourself comfortable. The audiologist will be with you soon.” The volunteer tells me.

Make myself comfortable? I am going to get the worse news of my life, well….the second worse, behind “Your baby is blind, do you have any questions?” It will be the same. “Your daughter is deaf, do you have any questions?” I should call the School for the Deaf right now and just get this ball rolling. No need to waste time…Good thing I have my Tab, I’ll just Google it.

I mean…the news cannot possibly be good. This couch is just way too comfortable.

Maybe I’ll hold off just a minute. Google will be there in 5 minutes. Maybe I’ll take a nap.

I’m feeling a little over-tired and the craziness has begun to set in quite rapidly.

Luckily I did not have to wait long enough to be able take a nap. (Well I guess it wasn’t so lucky for everyone else that had to deal with me the rest or the day.) The audiologist walked in and sat down.

Uh-oh. She’s sitting. Number one rule of doctors and nurses: always sit and be at eye level when delivering bad news to parents.

Stand up lady! Stand up!

“The results of Oli’s hearing screen were 100% normal. She has perfect, beautiful hearing. No problem.” She doesn’t give me the chance to spin out of control with panic.

“Really?” I exhale for the first time all morning.

“She’s fine. But her eardrum on the right is still not moving well. I think that it’s probably just scarred and thickened from having so many infections in it and then rupturing. It DOES NOT affect her hearing. She can hear you just fine.” She explains.

SHE CAN HEAR! OLI CAN HEAR!

To say that I was ecstatically, fantastically, wonderfully, overjoyed…would be an understatement.

I now knew, 100% without a doubt, that my sweet girl can hear me.

imagesCATLF7OC
(I know how to carry on. I just do not know how to keep calm while doing it.)

Tags: , , , , , , , , ,

Don’t Go And Get Coffee While Your Child Is In Surgery

5 Mar

If you can’t laugh at yourself, nothing else seems very funny. -me

As soon as the nurse’s walked out of the doorway carrying Oli, I began to cry. Some of the tears were shed from fear. That irrational fear that I would never see her again. Fear that the audiologist would walk back into the room and tell me that her hearing on the right was lost. Fear that she felt alone and scared. Some of the tears were shed because I was just sad because she is so young and has been through so much. No child should have to go through the things that Oli has had to go through. And the rest of the tears were shed because I am a mother. What mother wouldn’t cry if her child has surgery? What mother doesn’t cry when their child has anything that she can’t fix herself?

I waited in the pre-op room until the ENT came back to talk to me about his recommendations for putting tubes in her ears. He walked back into the room about 20 minutes later.

“She does not need tubes in her ears again at this time. They were perfectly clear. No sign of infection and no fluid. I was surprised. I’ll keep a close eye on them and we’ll see if they stay clear.”

I was surprised too! Usually when she has a runny nose and goopy eyes (which is did that morning) she also has fluid in her ears. I thanked him for his time and gathered my things to go wait in the surgery waiting room until they called me for the results of the hearing screen.

I walked back out to sit in those very uncomfortable waiting room chairs. Who designs these waiting rooms? It’s like they said, “What kind of chairs should we put in here? We know that these parents are nervous, afraid, and will be unable to sit still while they wait for hours for their child to get out of surgery. You know what would be the best idea for chairs in here? Hard, plastic ones with a thin vinyl covering with just enough padding to avoid bruising and corporate complaints. Why make this process any easier by providing sufficient butt comfort? Oh… and let’s put a few gazillion gallon fish tanks in here. Who isn’t comforted by Nemo and Dory? And make sure to build the cafeteria at least 5 miles from here. It’ll give them something to do.”

“Sounds like a great idea Bob! I have one more! Make sure the person at the information desk is at least 100 years old, has no idea where anything is located and can’t work the computer or the phone. Parents will think that’s hilarious and won’t be at all frustrated or annoyed.”

Before the ENT left the room and sent me to this wonderful waiting area he said that the audiologist would come find me in the waiting room sometime between 1 hour and next Tuesday to tell me the results of the ABR. They gave me this little blue pager that was supposed to light up and vibrate when Oli was done. I had to keep it with me just in case they couldn’t get a hold of me by my cell phone. I really wanted to go get a cup of coffee, but I hated the thought leaving the waiting room. What if the little blue pager only works within a certain distance from the surgery area? I doubted it would work 5 miles away and in an underground cave-like area, which is where the cafeteria was located. I seriously doubted that my cell phone would work there either. My cell phone only works half the time, above ground in my apartment.

I spent the next 10 minutes having an inner debate about coffee.

Did I really need it? My butt was really starting to hurt already. Maybe a little stroll would take my mind off imaginary surgical catastrophe situations. No, I can’t go. What if Oli needs me? What if the pager and the cell phone fail and something happens that requires the one thing that no nurse, doctor, tech, therapists, specialist, aide, helper, or 100 year old woman can help with. What if it can only be fixed by my immediate action or Oli will die? I don’t need coffee that bad. Wait…that would never happen. Oli’s fine and in good hands. I will only be gone a little while.

I decide to make a go of it and fast-walked my way out of the waiting room. My pager and cell phone were clutched tightly in one hand. A few weeks later I stumbled back into the waiting room, pager and cell phone non-vibrating, lit, or ringing. I sat down and glanced at the brown card attached to the pager. It was directions on how to use the pager. Aaaaa….I had been in enough restaurants (pre-children) to know how to use one. I didn’t bother reading the card when they gave me the thing. I read it now.

________Do not place pager and cell phone in direct contact. The pager may not work properly if this happens._____________

What?!

I was holding onto them both in the same hand!

Oh My God!! Something terrible has happened and I was GETTING F****** COFFEE IN EGYPT!!

I rushed the old lady at the information desk.

“My daughter Oli is in surgery. I went to go get coffee and I had my cell phone and the pager on me, but I didn’t know that I wasn’t supposed to put them in the same place because I didn’t read the card because, you know, I thought I knew how to work one, but then I got back and I read the little card and now I think you probably definitely tried to get a hold of me but my cell phone doesn’t work very well and of course the pager didn’t work because I had it in THE SAME FLIPPIN’ HAND AS MY CELL PHONE, STOP LOOKING AT ME LIKE I HAVE LOST MY MIND AND TELL ME MY DAUGHTER IS OKAY!!”

Of course I didn’t really say any of this. They might not let me take Oli home with me. I steadied my trembling hands, took a deep breath, and said “Can you tell me if Oliana is out of surgery yet?”

Tags: , , , , , , , , ,

Is She Afraid?

4 Mar

I can only imagine that preparing a typical child for surgery is difficult for any mother. Trying to explain something about hospitals, doctors, sleepy medicine, discomfort, and recovery time to a 5 year old must be like trying to explain Japanese to someone who has never heard of Japan.

I have never had to do it. Oli is the only one of my children, so far, (I have a sneaky suspicion that Ginger will one day break something doing her karate, dance, acrobats off the furniture) that has spent any significant amount of time in the hospital.

This last October, Kekoa fell off of his bike and required a few stitches. However minor it seemed to everyone else, it was traumatic for him. He was really scared on the drive there. He wanted to know exactly what they would do, exactly how much it would hurt, and exactly who would be fixing him. He wanted to know what would happen if they couldn’t fix his cut? What would happen if it hurt too bad? (Worst case scenarios. I wonder where he gets this?) He needed all of the information and was not so thrilled about trusting someone he didn’t know to make him better. Up to that point, I had always done that.

“Why can’t you just fix it mommy?” He asked me that multiple times on the drive there. I told him that the cut was just a little too deep for mommy to fix. I talked to him about the nurses and the hospital room where it would happen. I told him that they would put some numbing medicine on it and that it probably wouldn’t hurt too badly. I told him that I would be right there with him the whole time.

Despite all of these conversations and words of comfort, he was really scared and nervous. Until we met a boy a little bit older than him in the ER waiting room that had gotten stitches a few months before. He told Kekoa all about it and assured him that it was no big deal and that it didn’t hurt. He immediately looked at me with relief in his eyes and said “See mom. It’s no big deal. I’ll be fine.”

I could only smile and thank that little boy for providing the comfort for my child that I just couldn’t seem to give him.

As I walked Oli into that same hospital on Friday morning I wished that someone could provide Oli with that. Despite talking to her in the waiting room, telling her we were there to see a doctor, and explaining what we were doing step by step, I still wondered if she felt afraid. It’s hard to explain a concept like surgery to Oli. I don’t know any other way besides just talking about it like I talked about stitches to Kekoa. When the nurse took her temperature, her blood pressure, listened to her heart and then had her change into a hospital gown, I just talked her through it.

But does she understand what is happening? Does she think we are at her pediatrician’s office, her neurologist, or another specialist? Does she notice that a hospital smells different than a physician’s office? Does she think that someone is going to hurt her eyes? The last time she had surgery she had an implant put in her eye. This was a painful surgery. Does she think that I am doing this to her? She’s always pretty mad afterwards. What does she think when I hand her off to a stranger and don’t go with her? Is she scared? Does she think that I’m not there for her?

I don’t know. It worries me more and more as she gets older. I think that she understands a lot and I talk to her like she does. The nurse did give her a sedative before they took her back. I’m sure it helps because I assume that she is scared just like any other child would be.

A child life specialist came into her room before the procedure and asked what would help her not to be afraid. I just said “Talk to her. Talk. Talk. Talk. Tell her everything. Tell her your name. Tell her before you touch her and tell her exactly what you are doing before she goes to sleep.” I told this to everyone who walked into her room that morning. Both the doctors, 4 different nurses, the audiologist, the student audiologist, and the child life specialist.

When it was time to take her back to the operating room she was fairly sedated and had a glazed look on her face. I gave her a kiss, told her that I loved her and that I would be there when she woke up. I handed my precious girl to the OR nurse who carried her away and prayed that God would go with her. I prayed that she understood what was happening and that she wasn’t scared. I prayed that they would quickly get her off to sleep so that if she was scared, she wasn’t for very long.

This not knowing…not knowing what she is feeling…is the absolute hardest part of being Oli’s mom. It’s so hard not knowing just what she understands.

Tags: , , , , , , , ,

Fasten Your Seatbelt, This Road May Get Bumpy

19 Feb

funny-mom-quotes-brain-cells-for-kids

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:

road 1

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:

road 2

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:

road 3

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.

imagesCA5W00WF

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.

Tags: , , , , , , , , , ,

What Do I Know? I’m Only Her Mother.

18 Feb

“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. . .

images 1

Tags: , , , , , , , , ,

My Special Needs Mother Hat

18 Feb

“A woman is like a tea bag; you never know how strong it is until it’s in hot water.”
― Eleanor Roosevelt

I talk a lot about my journey to obtain my special needs mother hat. I don’t know why I use this term. I guess it just gives me a good descriptive picture in my head and explains a major role I play.

To me, this hat looks different than a mother hat. My mother hat fit well the first time I put it on. It was easy to wear, simple, elegant, and light. It was beautiful from the beginning and did not tear easily. When it did, I could take it off at night and stitch up any holes it acquired during the day. My stitching was never loose, came apart or was crooked. It always came back together nicely. It rarely fell off and never seemed heavy. I was proud to wear it and frequently showed it off. I enjoyed this new hat tremendously and was very reluctant to turn it in for my special needs mother hat.

When I got this hat it was WAY too big. It fell off all of the time. Sometimes it just blew right off my head. In the beginning I forgot that I had it and a big gust of wind would come along and POOF! Gone. I would have to go chasing it down the street. Sometimes I threw it to the floor in a moment of rage, frustration, or grief. And sometimes I just tried to leave it on the counter at home. I tried to pretend that I didn’t have it and that it wasn’t sitting there waiting to adorn my head like a 1000lb weight. It was extremely heavy. It had all kinds of straps, buckles, and ties attached to it that I couldn’t figure out. It had random flowers on it with names that I couldn’t pronounce. It was uncomfortable and became worn out looking. Rips and tears began to decorate the sides and no matter how hard I tried to stitch it up, my stitching never fixed the holes. They were loose, crooked and simply came apart by an unexpected tug in the wrong way. The whole hat would just fall apart. I would carry my hat in pieces back home and painstakingly try to put it all back together. At first it seemed destined to be big, ugly, uncomfortable, and prone to making me feel like an outsider. It seemed nobody had a hat that looked like mine.

After I wore it for a while, I began to notice other mothers whose hats looked like mine. They were worn and tattered, but had been repaired with beautiful hand crafted stitching and appeared loved and cherished. These mothers looked at me in my hat and smiled a knowing smile and pointed to their heads. “See. I’m proud of my hat. It may appear complicated and worn out to you, but to me it’s beautiful. Your hat will be beautiful too one day.”

Slowly I began to notice new things about this hat that I hated at first. I was learning to pronounce the names of the flowers on it and figuring out the buckles and straps. It wasn’t so big anymore and no longer blew unexpectedly off my head. It began to fit better as each day I grew a little more confident in my role. Every once in a while I still throw it to the floor, but now my reasons are different. It still gets ripped and torn, but I am learning to sew it back up and now my stitches hold it together. It doesn’t fall apart so easily and my stitches are straighter and stronger. I’ve learned to love each and every rip, tear, crease, and stain on my hat because each one has a story. A moment in time and a memory of where I have been and what I have gone through. It isn’t so uncomfortable now and it doesn’t make me feel like an outsider. Now it makes me feel like part of a group. A group of mothers with special hats and special roles that we love and feel honored to have. Now I’m not ashamed of my hat and I never try to forget it on the counter. I walk out of my house each day with my head held up high. Proud to show off my journey with my special needs mother hat.

Tags: , , , , , , , , , , ,

Airing Out My Bitchies

16 Feb

Today I am tired of trying to be upbeat and optimistic. Although I usually am (or at least try to pretend to be) most days because it just feels better, today I am not. Today I am gloomy Mcgloomster and I don’t want to pretend or try. I was going to FB about it, but then I thought “Shit. Isn’t this what the blog is for? Letting my bitchiness all hang out.”

I think my morning started off badly when my demon child, lovely 2yr old daughter, woke me up at 5:45am by jumping on my head screeching at volume 1,000 “MOOOOMMY! I’M DONE SLEEEEEPIIIINNNGGG!”

I will now need to add search for hearing aids on my list of To Do’s today.

After begging, pleading, bargaining, yelling, and cursing at her to please go back to bed until at least 6:45, I pouted and reluctantly stomped down stairs. She didn’t hear any of my pleas because apparently when she realized mommy was in a bad mood she high-tailed it to her happy place. I found her sitting in her favorite spot. Inside the TV. Girlfriend could not possible sit any closer to the thing if she tried.

After turning on Mickey Mouse (good thing that crap comes on early) I made coffee and proceeded to drink somewhere between 3 and 10 cups. I lost track after my 3rd trip to the bathroom. It’s my own fault for staying up so late. I seem to have developed an unhealthy obsession with shows about the paranormal. Apparently I am not the only one because every month Syfy, the Travel Channel, Bio, and every other channel on cable has added a new ghost show to their repertoire. Last night it was Ghost Adventures and The Dead Files.

This stuff is serious….and I am fascinated. It drives my husband bonkers. Sorry honey. It’s a hobby? Of course I can’t watch anything during the day so I am forced to stay up late into the night scaring the crap out of myself. See Ginger? The reason mommy is in a bad mood is because you force me to watch ghost shows at night.

After spending some quality time on Facebook I decided that I needed to get out of the house. Air out my bitchies. My mom came over and we took the three kids to the park. It was good and I felt better. Oli had fun driving her little swivel car. Ginger and Koa ran around screaming and throwing sand. I decided to take Oli down the slide. It sounded like a good idea until I turned around and discovered two other children had also decided to go down the slide.

My immediate thought was “Children, please don’t say anything stupid to me about Oli because I’m just not in the mood for lovely flower and cupcake responses.” Kids are always asking questions about Oli. Usually they are just curious. Sometimes they’re mean, but that doesn’t happen very often. Today, I just didn’t want to deal with it. I can’t remember the last time I went to the park with Oli and someone didn’t ask questions about her.

Why doesn’t she talk? Why doesn’t she walk? What’s wrong with her eyes? Is she a baby?

Normally I just tell them that God made her different and that she is blind. I’m nice and friendly. Honestly I would much rather have them ask me questions than just stare at her. Today I was just tired. I just wanted to be able to have fun at the park with her with other kids around and not have to answer questions.

So when the little girl came up to me and asked why she doesn’t talk I just responded “She just can’t.” I did smile, but then turned my back and walked away with Oli.

I feel bad. I really do. But, today I just couldn’t do it.

Today I am tired. And today I am tired of the questions and stares.

Tags: , , , , , , , ,

← Older Entries
Newer Entries →