Tag Archives: kids

Please Don’t Let Her Arm Fall Off

16 Feb

“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.

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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.

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10 Reasons To Give Up Newborn Hell

13 Feb

I know some mothers get really sad when they realize they are done having babies. I just want to give you some things to look forward to when you give up Newborn Hell.

1. Sleep. Oh sweet, sweet sleep. I think I forgot that word was in my vocabulary when I had babies.

2. Little purses. No more 50 lb diaper bags packed with 400 of your baby’s things and the tiniest wallet you can find crammed into the little front zipper.

3. Clean shirts. Good bye booger, throw up and drool stains!

4. Cute bras. No more nursing bras. Dear God! Could someone please make a cute nursing bra?

5. No more leaky boobs. You can now sit in the same room with another baby without checking to make sure your nursing pads haven’t shifted positions notifying everyone that you are the milk machine.

6. No more carrying enormous car seats everywhere. It was a fabulous day in my house when I sold my last child’s baby car seat. Why did I feel the need to leave her in the seat, carry it a mile through the parking lot, into the store or doctor’s office, only to lift her out and carry her on my hip and then the seat in my other hand? Why? I did though…every…single…time…

7. You can have sex again…like maybe even longer than 5 minutes. I don’t know about you, but every little sound on that baby monitor when my husband and I were…you know…. Instantly killed my mood. Oh, and the leaky boob thing didn’t help either.

8. Hot showers. You may now actually wait for the shower to heat up and stay in it long enough to get ALL of the soap out of your hair.

9. You get your living room back. Say good bye to the giant swing, exersaucer, play pen, floor play mats and bouncy seat that now dominate your living space.

10. If you’re lucky…very lucky, you may even get your sanity back. Months and months of crying, pooping, spitting up, not leaving the house and children’s music will take a toll on ones psyche. This is not a guarantee however. I am still looking for mine.

By the way…I guess I should mention that none of these actually apply to me except for the bras and the non leaky boobs because I still have Oli. The baby equipment in my house has now just been replaced with therapy equipment. That may be why I am continuing to search for my sanity;) But the bright side is I no longer have to tote a baby along for the ride!

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I Thought I Was The Only One

12 Feb

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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.

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Roller Coaster

12 Feb

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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.

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This One’s Broken

10 Feb

“The world breaks everyone, and afterward, some are strong at the broken places.” -Ernest Hemingway

The geneticist we saw was a large, friendly woman with a warm smile and a gentle nature. I was not quite as nervous when she asked if she could now perform a physical examination of Oli. I thought, “This woman is so nice she can’t possibly give me any more bad news.”

She started examining every inch of Oli’s little body and then offering phrases to her assistant. I was listening intently as she rattled off terminology to describe my Oli for her chart. Terminology that I was familiar with. I was starting to think that this woman wasn’t so nice.

“Extremely small eye sockets characteristic of microphthalmia and anophthalmia, hypotonia exhibited in all major muscles, microcephaly, congenital mid line defect, dysmorphic facial features.”

These words cut me to my core and left a painful gaping hole in my heart.

Dysmorphic facial features.

What? Are you trying to hurt my feelings?

I felt like someone had punched me in the stomach. How could she describe my beautiful daughter as dysmorphic?

Hypotonia in all major muscles.

So what if she was a little weaker than other babies? She could still catch up and get stronger.

Congenital mid line defect.

Mid line defect refers to the abnormalities associated with the fact that the neural tube failed to close properly when the baby was developing during the first trimester of pregnancy.

I hate that term. Mid line defect. I guess because it has the word defect in it and in turn implies that my girl was born defective. Like some sort of toy or kitchen gadget that fails to work properly when you plug it in. I couldn’t just return my girl to the factory and demand a refund. I couldn’t look at God and say “Sorry. This one’s broken. Send me a new one.”

Satisfaction is not guaranteed with children and I refuse to view my daughter as defective.

I told you I was sensitive.

Microcephaly.

She has an unusually small head. I pointed out to the doctor that I seem to also have a small head. I told her that I was able to wear my 9 year old step daughter’s bike helmet. Although, my husband has a huge melon (sorry honey) and I would think that between the two of us it would have balanced her out genetically.

She explained that while Oli was probably prone to having a smaller head because of me, it was more than that. Oli’s head measured below the 5th percentile on the growth chart.

“What does that mean in terms of her development?” I asked quietly.

“It can mean any number of things. She could develop normally or it could mean some mental retardation. Usually with microcephaly we tend to see some form of MR.” She replied honestly with sympathy in her voice.

That was when the fear for Oli’s future really took hold. I was already terrified of her facing the world without any sight but, now I had to think about her learning capacities as well.

Combined with all of the other things we had learned about her, it was starting to look like my girl was not just blind.

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5 Ways That Motherhood Has Changed Me

8 Feb

1. I can’t stand silence.

I used to revel in the silence. Now if no one is crying, giggling, arguing, singing or asking me a thousand questions I feel like the apocalypse may have happened and I was left behind.
I also can’t stand it because I know what it means. . .someone is coloring on the walls, making hair and dresses out of the toilet paper, or gluing my new earrings to paper.

2. I cook

No, I don’t cook well. But I do cook. Before I had kids cooking consisted of pouring a bowl of cereal and adding milk. Now I am like a mad scientist. You can find me in the kitchen whipping up concoctions, smoke billowing from burning pots and pans and children begging me for McDonalds. (They just haven’t developed their pallets yet to appreciate my cooking.)

3. Drool no longer bothers me.

I seriously had a major hang up about drool when I was pregnant with my first child. Thick, drippy, smelly, liquid constantly hanging from a baby’s mouth was one of my phobias. Gross. I never thought I’d get used to it. Now I don’t even think about wiping my kid’s mouths with my shirt, pants, hands, arm, or the nearest toy or baby blanket if it suits me. Sometimes I’m sneaky and wipe one of my kid’s mouths on the back of my other kid’s shirt. Excellent reason to have multiple children. You never run out of clothing surfaces to wipe faces on.

4. I don’t sleep.

Ok I do sleep, but I definitely don’t sleep like I used to. I used to close my eyes and be completely comatose until my alarm went off the next morning. Now I am on night time mommy watch 24/7. I hear a cough, sneeze, or fart in the night and I am suddenly the world’s fastest, sneakiest spy. I creep into their room, find out which one made the sound, decipher if it needs further investigation and then escape like Houdini before I am spotted by the enemy.

5. I think yoga pants and pajamas should be a strictly enforced dress code for stay at home moms.

Before I had kids I wouldn’t have been caught dead without my hair brushed, make up on and a properly thought out wardrobe. Now I think. . .Why do I have to get dressed to go to the grocery store? Why do I need to put on my “good jeans” (you know. . .the ones that don’t make my ass look like a deflated saggy pillow) to go sit in a circle with 15 other toddlers, singing The Wheels on the bus, coloring happy faces and trying to keep my kid from gluing the picture to the table? No my good jeans are reserved for the times when even my pallet is too underdeveloped to appreciate my cooking and we need to go to out to eat. I mean really out to eat. Like going to McDonalds and forgoing the drive through to sit in the exceptionally fun play room. I mean Playscape. . .yes, my jeans must be worn to the Playscape. If for no other reason than to provide a thicker barrier between my knees and the pee soaked tunnels my kids ask me to crawl through.

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What about me mom?

7 Feb

“A sister is God’s way of proving that He doesn’t want us to walk alone.” -Anonymous

Apparently I have seriously offended one little person in my house by not writing about her yet. When I picked Kekoa up from school yesterday I excitedly told him that I was able to tell a story about him on a website.

“What’s the story about mommy?”

“I just told people what an amazing person you are and how much you love your sister, Oli.”

At this point I hear a little voice pipe up from the back seat.

My 2 year old Ginger, is not about to be left out.

“Me too mom! You wrote a story about me too!”

She is far to grown up and sophisticated to use silly words like ‘mommy’ and ‘daddy’. We are mom and dad and sometimes, we are Shannon and Seth.

“Not yet Ginger. I haven’t gotten to that part of the story yet.”

“Awwww….I want a story.”

So now I find myself needing to write about Ginger. Although it in no way follows the normal sequence of Oli’s story, I have to tell you about my little princess. She is not about to be left out, let alone not be the center of attention.

This is Ginger.

Ahhhhh….Ginger. Where do I even begin?

Ginger was born when Oli was 2 months away from being 3 years old. I thought that it would be easy to have another baby at this point because Oli was getting a little bit older.

I was wrong.

To describe Ginger as being a difficult baby really doesn’t accurately portray the first 5 months of her life. I had no idea what I was in for when she was born.

She was a terrible infant. She cried all the time. And I do mean ALL THE TIME. Literally. If she wasn’t eating (which she always did) and she wasn’t sleeping (which she never did) she was crying.

Oli had a really hard time when she was born. She is very sensitive to loud noises and Ginger screamed like she was in a special baby crying contest and was intent on winning first prize. I’m sure my neighbors were convinced that I was somehow torturing my newborn.

We found out when she was 1 year old and stopped nursing that she was allergic to milk. She would break out with a rash all over her face every time I gave it to her.(I’m sure she was sensitive to breast milk too.)

Yeah. . .that would have been good to know when she was a baby.

Oli really wanted nothing to do with her. Every time I would try to put Ginger in Oli’s lap or even next to her, she would push her away immediately. I couldn’t blame her. Sometimes even I couldn’t handle her screaming anymore. But by the time Ginger was 5 months old she was much better.

I couldn’t convince Oli to like her though. I’m sure she had no idea what this little loud thing was. She’d never been around a baby before. So, one minute it was just her and Kekoa and life made sense. She had routines and structure and plenty of mommy time. The next minute she had erratic routines, no structure and mommy time usually meant sitting with me while I had a wiggly little body attached to my boob. It took Oli about 18 months to let Ginger get near her and now she loves her. But that was only because of how Ginger approached and treated her.

The personality differences between my oldest and youngest children are striking. They are polar opposites.

Where Kekoa is quiet and sensitive, Ginger is loud and bossy. Kekoa wants to help other people and never strives to be the center of attention. Ginger just wants everyone to cater to her and will do whatever it takes to make sure that someone is watching her. She is constantly singing, dancing, and performing. And if what she is doing is not immediately grabbing your attention she will get in your face and absolutely demand it. And that is exactly how she approaches Oli.

She just grabs her by the hand and pulls.

“Oli! Come play with me!”

(Oli has a lot of trouble standing up by herself.)

“Ginger, you can’t just pull on Oli. You’re not strong enough to help her get up.”

She will not be detered.

“Yes I am mom. See. Look at my muscles!

Come on Oli! Stand up. Let’s go.”

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She has never ever treated Oli like she is any different from anybody else. I would like to explain this away by her age. She just doesn’t understand yet. (She will be 3 in March.) I don’t think that’s it though. Only because I have always watched how Kekoa interacts with Oli.

Kekoa is more reserved with her and always has been. He is concerned that things are done properly with Oli and he is always cognisant of her visual impairment and her mental age. He has been like that since she was born. He doesn’t ever treat her like she is less than, but he is aware that there are things that she just can’t do or needs help with. I frequently hear him tell Ginger,

“You have to put the toys in her hands Ginger. She can’t see them when you just throw them at her! Put them in her hands!”

Kekoa wants to teach Oli things and makes sure that she gets what she needs.

Ginger wants Oli to pay attention to her. Ginger just wants to make sure that they are friends.

I really love this about her. I don’t have a sister so I know nothing about the special bonds of sisterhood.

I see it in my girls though. Despite their differences I see that bond.

Oli is so lucky to have two people who will always stand by her side. One who will make sure that no harm ever comes to her and the other who will make sure that no one ever leaves her out, pity’s her, or treats her differently.

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OMG!! What Did You Stick In Her Eyes!!

5 Feb

“No one is more insufferable than he who lacks basic courtesy.”
― Bryant McGill

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Although talking with these moms helped me tremendously, no one could have prepared me for the calamities of conformer therapy. I described the evaluation as being “awful” so to find a word describing peg conformers is difficult.

Horrendous, horrific, saddening, a catastrophic emotional disaster for an already emotional mother walking a very fine line between a healthy dose of hope and normalicy and a very unhealthy obsession pretending what if…

Peg conformer therapy walked me through new trials and tribulations and reminded me frequently that I did not possess thick skin.

These conformers were not pretty.

It looked like I had shoved little glass sticks in my baby’s eyes.

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"What did you stick in her eyes?" I actually had someone say these words to me.

"OMG! What did you stick in her eyes? Poor baby!"

As she clutches her chest and looks at me like she is about to call child protective services.

“Nothing! Nothing. I didn't put those in her eyes. Well, technically I did I guess, but only to help her.”

I start spouting off unsolicited information about her eye condition. Letting this woman know that Oli was born without eyes and that I drive her to California every 3-4 weeks and actually pay a professional to put these ghastly things into her eyes.

I am giving her way too much information at this point and now she is looking at me like instead of calling CPS she is thinking of calling the local psych hospital.

Well, serves you right lady! Don't say things like that to me. I'm sensitive!

Who says things like that to people anyway? I would never…

I was taught very young "Do unto others as you would have others do unto you". Thank you Mr. Snell circa 1985-1990. He was my elementary school principle and always closed the morning announcements with that lesson. I frequently hear that phrase repeated in my head in Mr. Snell's deep friendly voice. More frequently now that Oli has been with me.

As for spouting off unsolicited information about Oli, I still do this.

I'm going to make her a T-shirt that says "I'm just fine, but my mommy has issues!"

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What did I do before Facebook?

4 Feb

“Friendship is born at that moment when one person says to another: “What! You too? I thought I was the only one.”

― C.S. Lewis

As I struggled to understand what the doctors were telling me, looking up every unfamiliar word, phrase, and condition, I was also furiously searching the Internet for other families who had kids with Oli’s condition.

There had to be more of us out there! Where were they? This was pre-facebook when it was not as easy to find people or support.

Finally I stumbled across a Yahoo online support group for families of anophthalmic/microphthalmic children. I submitted a request to join the group explaining that I had a one month old daughter with the condition.

I was silently begging this woman on the other side of the country….

Please, please accept me. Please tell me that you can help and that you understand.

I received an email the next day telling me to follow the link to the online forum. I waited until everyone in the house was sleeping before I went back online.

With the darkness of the house surrounding me I was looking into a new light, a new hope via my small computer screen.

I clicked on the link and walked into a whole new world. A world in which my child was no longer a small minority with a strange condition. A place where I was no longer just one mom alone on this foreign voyage. I had found the hope and the sense of community that I had been looking for.

I read through numerous conversation links and looked at handfuls of photographs of children who looked like my Oli. Beautiful children with positive and inspirational parents who told me not to be discouraged. They told me that they too lived my story. My life, her life, her future was not to be without hope. I could be myself with them. I could be angry, express my grief, my sense of loss. I could tell them about the strange looks that people gave my daughter. I could tell them how annoyed I was when people thought Oli was sleeping because she couldn’t really open her eyes. They understood because they too had the same experiences.

They knew me and they knew my struggles. I never had to pretend with these women. In the months to come I clung to my computer screen in the darkness and welcomed that light. I asked many questions and always received honest and compassionate answers. I found friendship in a most unlikely place. With women I would never meet. Most of them have never heard the sound of my voice, invited me over for coffee or out to lunch. Most of them were just names on the computer screen. But, those women knew me in those early days. They knew me better than some of my closest friends because I told them how I really felt.

I never told them that I was fine.

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Growing up with Oli

4 Feb

IMG_1076“You are here in order to enable the world to live more amply, with greater vision, with a finer spirit of hope and achievement. You are here to enrich the world.”
― Woodrow Wilson

I have often wondered what it is like to be a sibling of a child with a disability. I know it’s an adjustment for any child when a new baby is brought into the house. But, what about the child whose life is forever changed beyond just having another little person to live with. It is so much more than parents now being more preoccupied with feeding routines, frequent diaper changes and crying episodes. And it’s more than just knowing that you now have to share mommy and daddy’s attention with a new sister when, well lets face it, you probably weren’t all that thrilled about her joining you. Especially since you were an only child up until now.

Your life changes because now life is riding in the car for hours and then sitting in little rooms with crappy toys and being told to “be quiet” while you try to wait patiently. It’s waiting in these rooms several times a week when all you really want to do is go back home and play with your toys and watch the Cars movie…again. It’s sensing the atmosphere change in your house and feeling the weight of a sadness that you don’t understand but, seems to have followed your sister home from the hospital. The weight that seems to intensify after waiting in another one of those little rooms.

As you get older you start to notice that your sister, who you have waited to play with since she was born, never seems to get old enough to play like you. She doesn’t sit up very well when she does learn to sit up and then she can’t see when you try to show her your newest Lightening McQueen car or your new Hot Wheels race track. Mommy tells you to put your toys in her hands to show her things, but frankly this doesn’t make sense either because then she only puts your new toy in her mouth and ruins it with slobber. She never learns to move around the house which means mommy has to carry her every where. The words “Oli just needs more help” are lost on you when you just want to be picked up and carried around like before. You love your sister but, just don’t understand her. You ask questions and want to know why she is so different than you but, mommy’s explanations that God made her different don’t make sense. Why can’t the doctors just make her better. She is obviously sick and this is what doctors do. Why doesn’t she ever get any better? Why do they keep taking her to the doctor if they don’t fix her?

As you grow and change, learn your letters, learn to count and tie you shoes you try to show your sister so she can learn too. But, your attempts are to no avail and she doesn’t seem to get it. She won’t talk to you and now you are drifting farther and farther apart. She starts to do strange things like flap her arms, hum loudly and shake her head. You try to play like her to connect with her in some way but, what seems to amuse her is just boring to you.

You never give up though. You never give up trying to form that connection with her.

She is your sister despite your differences. Mommy and Daddy have always taught you to love her and help her and that is exactly what you do. Not so much out of a feeling of obligation but, because that is just who you are.

Kekoa you are such a special little boy. I love that you just love her and even though it’s been 5 years since everything in your life changed, it has never dampened your spirit or your love of your family and life. Please keep your kind heart and don’t pay any attention to people who may try to lead you down a different path.

You, my son, are going to change the world.

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