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Why I Feel The Luck Of The Irish Today

17 Mar

In the spirit of St. Patrick’s day, Irishmen, luck, and all that, I thought I’d write a few reasons why I think I’m so lucky to be a special needs parent. Now, before you throw up a little from my extreme sappiness and begin thinking that I am THAT mom (you know, the one who tells you everything in life is great, chocolate and strawberry milkshakes, cotton candy, and unicorns). Just know that I didn’t always feel this way. If you’ve read most of my blog you already know this about me. (And if you haven’t read it, please do. If you want to. I’m saying that in my mom tone.) And also know that I don’t feel lucky every single day. Some days are really rough, but who doesn’t have those days? Special needs child or not. My rough days might just involve more Q-Tips, poop, and dinners gone wrong. I just try to remember to be grateful every day because if I forget that…it’s a very dangerous place for me to be in (Eventually I’ll get to that part in my story. Stay tuned. It’s a good story!)

I felt soooo sorry for myself for such a looooong time.

Why did this happen to me? I didn’t ask for this. I didn’t expect to have to have this kind of responsibility in my life. I didn’t want to drag my child to hundreds of doctor appointments, therapy appointments, put her through surgeries, conformer appointments, evaluations, and watch people as they judge her, make fun of her, or feel sorry for her. I also didn’t want people to judge me, question the decisions I made for her, or feel sorry for me.I didn’t want to have to watch my child struggle. I didn’t want to constantly wonder what she was thinking. Wonder if she was really happy. Wonder what she wanted and what her dreams were. I never wanted to feel like no matter what I did, that it wasn’t enough because I just couldn’t fix it for her. I couldn’t make people understand her or love her or treat her with compassion. I couldn’t stop the stares or the questions. And I couldn’t really know how much of it she understood.

I didn’t ask for any of it.

But, you know what?

Neither did Oli.

Neither did she.

So, eventually I got my head out of my ass and stopped being the person that I hated. The one who felt sorry for her and felt sorry for me.

Which now brings me to the reasons that I feel lucky to be her mom. After that very long winded introduction.

1. First off, I feel lucky to be anybodies mom. Seriously. To be in charge of little people who are so interesting and funny, strange and bizarre, naughty and annoying, but who are ALWAYS loving and amazing. It’s so crazy and I cannot believe that it is possible to love anyone as much as I love my children.

2. The people that I have met because of Oli are some of the most influential people in my life. Other moms who share their journey with me and continue to awe and inspire me every single day. They are some of the most courageous, generous, selfless, positive people that I have ever met. Therapists, doctors, outreach coordinators, teachers, parent support coordinators, ocularists….the list goes on. I’m so lucky to have these people in my life. Without any of them, I couldn’t do any of what I do. I need support and sometimes I just need someone to listen. Because of Oli I have all of that.

3. I feel lucky that because of Oli I have something to write about. Bad reason, I know. But, it’s true. Because of her I get to tell our story. I get to reach out and maybe let someone else, whose been where I’ve been, know that it’s okay. They’re not alone. It’s really crappy at first. And it’s hard and it’s sad, but it gets better. It gets so much better. Even if it gets harder because our kids get older, it still gets better.

4. On that note, I feel lucky that I get to share my story with so many people who don’t have a special needs child. Because maybe they’ll read my story and gain a little bit of understanding and perspective. Maybe they’ll read my story and the next time they see a child in public who looks a little different or who is having a meltdown, flapping, shaking, humming or yelling, they’ll think of my Oli. And then they’ll remember what I have said about my journey. How hard it really is sometimes and that all we want is a little bit of compassion. Maybe they will try not to look at the parents with pity or not judge them because they can’t control their kids. Maybe I’ve reached someone out there and it will make a difference in someone else’s life.

5. Most of all I feel lucky to be her mom because…well, because she is just my Oli. If you’ve met her you know what I mean. She feels everything with a fierce emotion that is so rare. I’m glad to be a part of that. I get to see her face challenges head on and never back down. Rarely does she show fear. She trusts me so much that sometimes it scares me. She loves me so much that sometimes it takes my breath away. And she is so brave, strong, funny, curious, and stubborn that sometimes I just look at her in amazement. How can such a big, sweet, phenomenal personality fit into such a tiny little girl. She reminds me every single day what my purpose is in life and allows me to share this bumpy road with her. She forgives me when I mess up, she forgives me when I have to do something unpleasant to her, she forgives me when I allow doctors to do things that are unpleasant, she ALWAYS forgives me. She always just continues to love me. She might be mad for a little while, but then she will wrap her little arms around my neck, pat me on the back, and whisper “Mom-Mom” in my ear. It’s like she’s saying, “I know it’s not your fault Mommy. I know you didn’t ask for this either. I know that you are just trying to do what’s right and are doing what you think is best for me. I love you and I love that you walk BESIDE me and not IN FRONT of me. And I’m really glad that you don’t feel sorry for us anymore.”

And those are the reasons that I’m so lucky to be Oli’s mom.

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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.

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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.

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My Old Lady, Gertrude

28 Feb

Tomorrow Oli has surgery…again. Every time she has to go through this I think, “For sure this is the last time. Surely she won’t need anything else done.” I think it Every. Single. Time. And then we have to do something else. Something comes up that only can be done under anesthesia.

Tomorrow’s surgery is no big deal. I know that it’s no big deal. They will not be cutting into her. Many, many people have gone through MUCH worse with their children. I know that too. Oli will only be having an ABR (hearing screen) done and possibly tubes put back in her ears.

But…I am terrified.

I have this wicked old lady, Gertrude that lives in my mind. (Wait….stay with me here.) She likes to whisper nasty, horrifying things in my ear. Remember worst-case-scenario-girl from previous blog posts? The one who is sure the power will fail during Oli’s surgery and her arm will end up falling off? Gertrude tells me these things. “Yoo-Hoo! Shaaannoooon! What if the anesthesiologist is a drug addict and gives her WAY too much medication and she never wakes up?” This is not all that far-fetched. When I had my tonsils out as a child my doctor was an addict and really did give me too much anti-nausea medication. Fortunately it was just that and not too much sedation. (A few years after my surgery he ended up giving a pregnant mommy too much sedation and sadly, she died.) I just couldn’t control my tongue for hours after surgery.

What?

Yes it was very, very bizarre. It would pull back towards my throat and then hang out like a dog. On the drive home my mom kept saying “Shannon. Stop that! It’s not funny.” I told her I couldn’t help it. After I finally convinced her that I wasn’t doing it on purpose she got kind of freaked out. (Hello! Her child had lost all voluntary control of her tongue!) She called the hospital and after looking at my chart the nurse realized that during surgery, I had been given WAY too much medication. The sticking out tongue thing eventually went away after a few hours. Thank God!! What if I had to live the rest of my life like that? What if I still had no control of my tongue? Has that ever happened before? I should Google ‘permanent loss of voluntary tongue control’.

Then I start thinking, what if that happens to Oli?

No. I probably shouldn’t Google it. I don’t want to know.

I’m just nervous. Nervous, nervous, nervous.

I’m scared because they will be putting her to sleep (obviously that alone provides a whole crap load of things for that old lady to work with), but I’m also scared of the hearing screen results. What if it’s NOT just fluid in her ears? What if that doesn’t explain why her eardrum isn’t moving? What if it’s something congenital? What if she’s NEVER been able to hear well out of that ear? I’ve spent her whole life providing a lot of information auditorily. What if I’ve been doing it all wrong? It would definitely explain a lot if it turns out that she really isn’t hearing well.

No matter what, I have to try and ignore the millions of bad scenarios that are racing through my head. (Shut up Gertrude!) I have to put aside my own fear and step up for Oli. And I have to just keep moving forward whatever the results of that test show.

“Don’t dwell on what went wrong. Instead, focus on what to do next. Spend your energies on moving forward toward finding the answer.” -Denis Waitley

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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.

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A Chance To Go Back In Time

15 Feb

I wonder if they will ever invent a way to travel back in time? If they do, there are a few moments that I wish to revisit and appreciate a little more.

I would like to go back to my wedding day. Not so much to just relive that moment, although it was wonderful, but more to go back and see my grandmother again. I was such a bitch that weekend. It was all about me and I didn’t spend enough time with her. She flew all the way from Iowa to Hawaii to see her first granddaughter get married even though she was dying. I wish I could go back and realize how short her time here really was. I thought, Oh I’ll see her again in a few months. I don’t need to go check on her in her room or have dinner with her tonight….Selfishly I let these moments slip by.

She died a few weeks after my wedding.

I would like to go back to the days when Oli was a baby. I cannot believe I actually just said that! I used to say you couldn’t pay me a million dollars to return to those days. But here I am saying it.

I have come to realize that something happened or changed in Oli after she turned one. She seemed normal as a baby. No head shaking, no flapping, she babbled and was interested in other people. Other than her blindness, she was typical. I was so distraught and terrified that I didn’t appreciate that she was okay. She was okay back then. She’s okay now, but it’s different.

I just watched a video of her yesterday from when she was about 6 months old. She was playing in her bouncy seat. I almost couldn’t watch it. I had an inexplicable urge to reach through the TV and scoop her up and transport her to now. Avoiding whatever it may have been that caused her autism. Whatever connection that she lost or was broken between then and now.
My family will mention to me lots of times that they just don’t understand why she stopped talking and why she started shaking her head, flapping her arms, and having extreme meltdowns. They will say things like “Remember when Oli said _____?” And then look at me like I can somehow offer them a reasonable explanation for the change in my child.

I can only look back at them with my own expression of bewilderment and shake my head. I don’t know why, but I do remember those days. Some of those memories are starting to fade. Much like when my grandmother died. I have a harder and harder time recalling her face and voice as the years pass. Seeing a picture of her brings it flooding back. Watching that video of Oli yesterday did just that.

Yes, now I remember when she said mamma, milk, juice, out…. I remember when I used to do something to make her giggle and could snap a picture of her and it didn’t just show a blur of movement. I remember when she used to try and hold a spoon and feed herself, when I could keep her engaged and she showed interest in things outside her body….. I do remember all of those things. Even when sometimes I don’t want to because it’s just too painful.

I hope they invent a time machine some day because I would also love to go back and knock some sense into my head. “Stop feeling sorry for yourself and pay attention to all that your daughter can do. Because some of those things will fade away…”

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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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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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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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You’re probably not a special needs parent if….

2 Feb

1. You have money.

2. You drive a small car.

3. You drive a nice car.

4. You don’t know what IEP stands for.

5. You don’t have a small panic attack, cringe, or cry when you hear the word IEP.

6. You go out to eat at restaurants and stay longer than 20 minutes.

7. Going out to eat does not mean going through the drive through at McDonalds.

8. You regularly enjoy meals without someone spitting a mouthful of chewed mush all over your shirt and then clapping and laughing. This is not done by your baby.

9. Your purse doesn’t weigh 5,000lbs and include things like emergency medication syringes, extra-large diapers, special snacks, multiple packs of boogie wipes, or weird toys.

10. Your wallet isn’t bursting with business cards from doctors, specialists, therapy places, schools, and support groups.

11. You never get emails titled “Sale! Feeding chair only 1 million dollars (regularly priced at 5 million)”

12. You don’t schedule your day based on what kind of mood your child is in.

13. You can go shopping with your children and never end up back in the car crying.

14. You’ve probably never been bitten, scratched, spit on pooped on, peed on, or thrown up on all in one day. Unless you’re a nurse.

15. Poop on the walls is DEFINITLY an emergency.

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