Archive | 7:15 pm

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.”


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.

Emergency items are required!

7 Feb

“Having a child is liking getting a tattoo…on your face. You better be committed.” ~ Eat Pray Love screenplay

When Oli was born I got a crash course in packing for a child with disabilities. And it wasn’t only the trips to LA that provided me with my learning experience. We still lived an hour away from Las Vegas at that time, which is where all of her regular doctors and specialists were located.

I have learned over the years that the amount of stuff Oli has to have to go anywhere has not decreased in proportion to her age as it usually does with children. If anything I think it has actually increased.

When she was a little baby I had to make sure to remember to pack diapers, bottles, the mommy torture device, er… I mean breast pump, and a couple changes of clothes for her AND me. She had really bad reflux and was prone to soaking both her and I with sour partially digested milk. On that note, I also had to remember to bring lots of wet wipes and never forget the bulb syringe. While driving I had to keep a close eye on her in the review mirror in case she had a particularly bad bout of reflux. The milk, and later her baby food, would come up and out her nose in which case I had to immediately pull over and perform the very precarious operation of baby nose sucking.

As an older baby she required diapers, wipes, food, clothes, toys and a good song on the radio.

As a toddler these same items were required and we added in a few extra things. The toys we had to bring got more interesting and had to be MacGyvered into our car and hung in a way that she could always find them and know where they were. Young blind children have no concept of item permanency. When a blind baby drops something it just magically disappears into space. Once it’s out of touch with their little hands, in their minds, it’s gone. Poof!

The binky. It was a major disaster if I forgot to bring the binky. I still find myself in a moment of panic when I realize that we are out and I did not bring the one item Oli needs to soothe herself. No binky could potentially ruin a car trip, a nice dinner out, a shopping trip, or any other function that requires my girl to sit nicely for longer than a few minutes.

Going out or on a road trip now forces me to do a medication check list. Has she had her seizure medication? Check. Her drooling medication? Check. Emergency seizure medication in the bag? Check. Prilosec been given for her reflux? Check. Are we staying over night? Then we need more seizure medication, more drooling medication, more Prilosec, and THE MOST IMPORTANT MEDICATION…..

the sleeping medicine. I absolutely CANNOT forget the sleeping medicine if we ever stay over night somewhere. This would be very very bad. Trust me.

She also needs her little potty seat. Even though she’s not fully potty trained I’ve been taking her to the bathroom since she was two. And my girl absolutely insists that I take her poop on the potty.

She needs little toys that I can stick in her bag. Things to entertain her in restaurants, waiting rooms, or in the grocery cart. Like dolls with yarn hair or small blankets that she can flap around. She loves this.

Snacks! My girl absolutely loses her mind when she is hungry! I mean sometimes I think she has been possessed by a demon. Her head starts spinning, she starts snarling and clawing. I’m thinking what is wrong with this child. People in close proximity to her are backing up and grabbing the cross hanging around their neck. And then I realize she hasn’t had a snack in two hours. I only have a two hour window between meals and snacks and then Oli apparently thinks she is starving to death and is convinced that I will never feed her again. Yes, snacks are very important.

Drinks. She has only a slightly more docile reaction to feeling thirsty.

Boogie wipes are also a necessity. She always has a runny nose and they are great for cleaning the bit of maka pia pia (eye sand) from the corner of her eye.

The stroller in case she comes down with a case of floppy spaghetti legs and refuses to walk.

Q-tips. Oh my gosh, I almost forgot to write about Q-tips. Not for her ears either. These are for her eyes. Sounds strange I know but, try fixing a rolled prosthetic eye with your big clumsy fingers. Impossible. Q-tips work perfectly and I am proud to say that I offer training opportunities frequently for Oli’s new teachers and therapists. I probably have personally funded vacations for the CEO’s of Uline with my frequent Q-tip purchases. Well, okay, maybe I haven’t bought that many boxes. But I have bought a lot!

I’m sure there are many things I am forgetting but it seems like I’ve covered the emergency items needed for a trip “to the outside world” with Oli.


Logan is challenged but not limited, and he is living his life like a boss. I am just lucky enough to be along for the ride.

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