I say “I think” because I don’t want to say it at all. I don’t want a child with special needs. I want a child who had cancer, kicked it’s butt, and now is “normal.” Yesterday Emily came with me to the post office. I walked behind her. All arms and legs, 4 years old and just 33 lbs and super tall. (So far radiation has NOT stunted any growth!) Lanky and skinny. She bounded in with a nose tube hanging out of the right side of her face which is 2/3’s covered by her BMT mask that is her shield against the world of germs, her right arm wrapped in CoBand, tucking in the 2 new Pic Iv lines that will stay there until December, her sneakers bursting at the sides from her new orthotics that come up around her ankles and her 2 new hearing aids on either side of her head.
The orthotics have animal prints on them. I tried to make it fun that she was stepping on a monkey with each step she took. So between the jungle print orthotics, the hot pink and orange “ear jewelry,” (her choice of colors), her neon pink CoBand wrapped around her arm and her bright turquoise mask the kid is quite a fashion statement. As I watched her it was the first time I saw her as a kid with special needs. All those flashing colors proclaiming to the world….I am not “normal.” I have ….ugh my stomach turns as I type this….”disabilities.” It was almost as if for the 1st time I saw her as other people see her.
It’s strange that in almost 9 months I have never seen her as a “special needs” kid. Even though her bedroom looks like a medical storage room…bins of syringes, Tagaderm tape, a huge “Tree” pole for her feeding pump, backpacks and pumps for her TPN, bottles of saline, heparin, sterile water, and more creams, lotions and drugs then a pharmacy. Still it’s just her room. She’s just my kid. It’s just part of cancer. And it’s not forever.
Today forever hit. Even when cancer is over the effects are not. “Long term side effects” It’s something you don’t hear about much while you’re going through treatment. When I ask about them I get vague generalities. Partly because no one knows (I mean really, this is the 1st generation of kids who live through cancer to HAVE long term side effects) and also, I think, because everyone is all too aware of the reality is she may not be around to have long term side effects. Why worry about that yet? Let’s hope she HAS long term side effects that you’ll have to deal with. This seems to be the general consensus. Any side effects are worth survival. Long Term Effects = Life = Victory.
Of all the things this kid has gone through, of all the “badges of courage” she has ( 2 chest tube scars, the “diamond cut” across her abdomen, the small pencil eraser shaped scars that cover her chest from various stitches, lung surgery and biopsys) The hearing aids bother me the most. Maybe it’s because I can’t put a shirt over them. Maybe it’s because without hair and their bright neon color they scream “I CAN’T HEAR!” Maybe because it reminds me every time I look at her I hate cancer. Maybe it’s because I don’t want her to have long term side effects. After all, she’s my Miracle Kid. Miracle Kids don’t have long term side effects. Or maybe that’s what being a Miracle Kid means. You get to have long term side effects because you lived. You survived. And you were victorious.
I wondered how many people were looking at her as she bounced her way into the post office totally oblivious that she is different. That she is now a “special needs” kid.
We just got her ear jewelry this morning. 9 Am. Her, me, and her dad. All in one room. (That in and of itself is blog all it’s own). I have to say at least they really do look like “jewelry.” We’ve gotten so used to calling it ear jewelry that when the audiologist handed her a book about an Elephant and his hearing aids the words “hearing aids” through me off…..wait, I thought we were getting ear jewelry…hearing aids just do not sound as fun or as cool. Fortunately she is 4 …hot pink and orange ear jewelry is cool.
And then, Stephanie came in the room. She works at the hospital in the audiology department and talks to all the families when they come in to actually get their hearing aids. I never really caught what her actual job was. Maybe, hospital Angel?
She has a hearing aid. In one ear. In the other, a Cochlear implant. You can’t see them. Her chin length bob covers them. Other than her speech she “looks” normal. She’s pretty. Very pretty. I’m sitting there as she is talking to me thinking “Wow she seems so normal.” Then I think “Why would I think someone hard of hearing is not normal?” I have no idea. And I have to admit that I guess subconsciously I do. I must if I was surprised she WAS normal. She has a wedding ring on. Someone married this woman! I wonder what her husband is like. Does he care his wife is….
*ok wait, I don’t even know the politically correct term….Hard of hearing? Hearing disabled? Hearing impaired? Part way deaf!?? …I guess I should find out because now it describes my daughter…I decide I’ll Google it.
I am shocked by my ignorance. I am relieved she is married. Someone wanted to marry her. Maybe someone will still want to marry Emily even if she can’t hear. Here is this beautiful, well dressed, married, well spoken, put together woman. And she has a hearing aid! Doesn’t seem to affect her much. She pops it and out and shows Emily. Like it was an earring. I wanted to ask her if she went to her prom. I mean getting married is one thing…by the time you get married I would hope people don’t care about a little thing like a hearing aid. But the prom? Will Em be the 6 foot 3 inch dateless deaf girl who needs to take her cousin to the prom? Will she need to wear orthotics with her flat shoes because she’ll be too tall to wear heels? And we will have to have the hair dresser try to style her hair to cover her hearing aids and have to find a dress that covers the blue veins that come up her chest to her left arm because of a clot her broviac left? I have this horrible mental picture of a promo photo of Emily. The only thing worse is that for some reason I also picture her in head gear and a mouth full of metal.
I am a terrible person.
My child has fought for 9 months to kick cancers butt.
She has endured weeks of NPO (nothing by mouth) crying that she was hungry.
She has endured months of having ac chest tube tying her to a bed and scared to take a step.
She has endured physical therapy, occupational therapy, breathing therapy.
She has endured an 8 hour surgery where the picture I have would never be equated with a human being – just blood and guts everywhere except for the belly button at the bottom reminding you this is her STOMACH!
She has endured internal mucasitis soars running from her mouth to her butt so painful she was on a narcotic drip.
She has endured cyclical vomiting – puking every 15 minutes for 10 days and getting acid burns on her chin from the vomit.
She has endured 104.5 fevers being packed down with ice, ER admissions, twice daily injections into her skinny little legs and dressing changes all over.
She has endured a week of bio therapy with blood pressures 50/20 in the PICU.
And what I do care about?
Getting her a prom date.
Really I am sure my thoughts alone are offensive to every special needs family and child out there. Am I that vain? I did pray when she was in my belly that she would be pretty. That she would not look like her Aunts on her dad’s side. (They look just like her dad…except they are women…) I will defend myself by quoting a new study that shows pretty people actually make more money than non attractive people. (And hope nobody mentions Bill Gates)
And now as I watch her I realize she is not normal. She is beautiful. She is funny. Everyone in the hospital who meets her loves this kid. She has a reputation. She is more self assured then any 4 year old should ever have to be. And she is a child with special needs.
Maybe, just maybe, somehow her special needs reflect on me and threaten me since, after all, I seem to be the only one with the issue about her ear jewelry. She does not seem to care. I tried to make it fun. I told her I was jealous – I wanted ear jewelry – I asked to borrow them – asked if I could get a matching pair. She told me no. I begged the audiologist. She told me no. I told her C & A (the two other kids with the same Neuroblastoma and same therapy) didn’t get ear jewelry. That it must just be for Miracle Kids and not to tell them because they would be jealous. Then I dramatically gagged and told her longer she wears them the more ear wax I would have to clean off and that I couldn’t handle the gross stuff like she could. She loved it and said she would wear them all the time. The kid LOVES to gross me out. Other than trying to get used to how they feel she doesn’t seem to care at all that her ear jewelry makes her different. She does double check to make sure I took the orange “necklace” with us because she wants to wear that jewelry too. (It’s a string that hooks to the back of the hearing aids and clips to the back of her shirt so they don’t fall off or get lost. They are really more for babies but Emily loves jewelry and to her it’s just another “accessory.”) I mean really, this is the same kid who is begging me to shave her head now that her hair is growing back in and she doesn’t want to have to wash it. Hot pink & orange in her ears is nothing.
The mask will come off next week. The nose tube isn’t permanent. The Pic Line is until December. And even her broviac will eventually come out. Her hair will grow in and cover her hearing aids and in the winter she’ll wear boots and you won’t see her orthotics. All the “externals” will change. She will look “normal.” Although, I’m not sure what that means any more.
She was so angry the other day playing outside with the neighborhood girls. She couldn’t keep up with them on their bikes. She was frustrated that her legs tire more easily. She started crying. I held her & cried with her because she wasn’t as “strong” as them. My kid who is kicking cancer’s butt. Cancer that kills even the toughest of men. That stumps even the smartest of scientists to find a cure. Cancer that strikes fear in the hearts of most grownups just upon its utterance. That cancer. She is kicking it’s butt. She is waging war on “Stupid tumor.” She reminds Stupid tumor daily that she hates him. She takes her meds even when she doesn’t want to and reminds Stupid Tumor he is staying in pathology. She tells Stupid Tumor he has no friends. And she asks me regularly if I also hate Stupid Tumor. (I do). She looked at me the other day and said “Mommy my tumor’s still that word that you won’t let me say.” (She called him F’ing Tumor one time. When I told her she couldn’t use that word (after I got over my shock that she has HEARD that word) she put her hands on her hips and asked “Why not? It is a F’ing Tumor.) I had to agree but still said she couldn’t say that word.) She has a personal vendetta against Stupid Tumor. It’s her or him and she’s decided she’s winning. I think bikes or not, she is the strongest kid I know. She asked me at the clinic last week if I thought A & C were strong too. I told her any kid that kicks cancer’s butt is strong. These kids are little warriors and don’t even know it.
I take a deep breath. She’s in bed and the hearing aids are sitting in their “jewelry box” on her night stand. Her pump is running her TPN, her feedbag is running her formula feeds, and she is curled up next to me in her bed. I kiss her fuzzy head. I miss that bald head. Time marches on. Life will go on. One day her room will be “normal” & won’t have all these supplies, and I won’t need to bring out a new garbage bag each night full of medical trash just from trying to get her ready for bed. Like all “normal” kids she will start school, have homework, go to sleepovers, and hopefully, have a prom date. Life will be “normal.” Our days will be “normal.” And bedtime routines will be “normal.”
she will not ….
she will still be… special.