illness

Home Sick

Dear Child,

I am so psyched that you are home sick today. When the nurse called yesterday to give me the exciting news that you weren’t feeling well, I almost jumped for joy. I mean, it’s been–what?–three whole weeks since you were sick? I love tending to you when you are sick. I love how you moan, how you writhe in pain, how you beg me for food that I can’t give you because I know you are going to throw it right up.

I love how when you vomit, you never make it to the toilet but to an expensive rug instead. I love how I gave you red Gatorade instead of white so that now I have to throw out all the rugs. I love how once you are feeling better and in school again I won’t be able to get a pedicure or meet a friend for lunch because I’ll be too busy driving up and down the state of New Jersey looking for a good sale on rugs.

I love how I don’t sleep when you are sick because it worries me so much. I love the anxiety I get and the buzzed feeling it gives me. I love how your father is still working from home today even though you are sick and will still ask me to make him a tuna sandwich for lunch as if it’s a regular, normal day and I’m not hallucinating.

I love how you cling to me while we watch another episode of the Amazing World of Gumball, which isn’t amazing at all but bizarre and, frankly, painful. I love how you will not release me to wash the dishes or do laundry so that when your brother and sister come barreling in later this afternoon, I won’t be able to provide either of them with a clean drinking glass or soccer uniform.

I love that I won’t be able to walk the dog as long or as frequently today, so that his pent-up energy will cause him to steal and chew one of my brand new erasable Pilot Frixion pens that I had to special order from Amazon. He will also poop in the basement today, but he’ll do it in a spot that is hidden from view and so I won’t discover it until someone steps in it and tracks it all over the damn place.

I love that it is finally gorgeous outside but I am inside, as if it is still winter. I love wiping your butt raw from another rotten bout of diarrhea while I listen to the birds happily chirping outside the bathroom window. I love that the world keeps humming along when you are sick, leaving me feeling forgotten and alone in my misery.

I love that your sister has an orthodontist appointment today–the same one I have had to cancel six times before–but because your father is going to a golf tournament this afternoon, I either have to cancel the appointment for the seventh time or bring you with us and hope you don’t vomit in the waiting room.

I love that after a successful trip to the orthodontist, you will think you have recovered completely and insist on playing basketball in our driveway, even though I know it is too soon for basketball.

I love how you will try your best to rest but will instead follow me around the house while I catch up on everything I have neglected, sharing with me every thought that goes through your six-year-old head, no matter how rambling, irrelevant or insignificant.

I love how great it will feel to drop you off at school tomorrow (depending on how tonight goes), and just as I begin to get my bearings again, the nurse will call me with the joyous news that your brother isn’t feeling well and the whole cycle will begin anew.

Love,

Mom

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My Brush with Galactosemia

The birth of my first child in 2003 was terribly traumatizing for me. I was completely unprepared for all the blood, the length of time it takes a vagina to open wide enough for a baby to pass through, and the word galactosemia.

I heard the word for the first time ten days after my daughter was born. A doctor I didn’t know called to tell me that a test from the hospital came back abnormal and I was to get another test as quickly as possible. She also told me I could be slowly poisoning my new baby with my breastmilk and to switch to soy formula immediately. Like within the hour.

As you can imagine, I was beside myself. I reached out for help from my midwife, my pediatrician, and my friends, many of whom were also new mothers and who had, I hoped, gotten the same scary phone call that later turned out to be nothing. My midwife and pediatrician sided with the doctor and told me to rent a breast pump until we could get things straightened out. None of my friends had ever gotten a similar phone call and none had ever heard of galactosemia. They did reassure me, though, that their cousin had a friend who had a baby with lactose intolerance and was doing fine.

Of course, lactose intolerance and galactosemia are not the same thing. Galactosemia is a rare metabolic disease characterized by the body’s inability to digest galactose, a sugar found in human and animal milk. The sugar builds up and becomes toxic in the blood, causing kidney damage, seizures, and death. If you identify galactosemia early enough, your baby will likely live but with serious complications like mental retardation, developmental delays, and infertility in girls. In fact, galactosemia is so devastating that almost all newborns in the United States are screened for it at birth, along with some other, equally horrifying diseases such as phenylketonuria (PKU) and congenital hypothyroidism.

In my gut, I knew my baby didn’t have galactosemia, but I had to do the right thing and switch my daughter cold turkey to soy formula and pray that after 24 hours or so I could go back to breastfeeding and everything would be right with the world again. I took my brand new baby out in the bitter cold and snow of February to the hospital where there are all of these people and all of these germs and got her heel pricked by a needle for a second time, and I cried right along with her.

When the 48-hour marked passed with no word from the hospital and the breast pump I rented from the corner pharmacy failed, I had a nice little meltdown on my living room floor. I was so angry that this was happening to us. Simultaneously, I felt guilty because there are parents out there who live with galactosemia or worse things like Down Syndrome every day, and they actually feel blessed! Here I was just borrowing galactosemia and I felt like the world was ending.

The hospital wound up losing the results of the second test, so we had to get the baby’s heel pricked a third time. While we were waiting for the results of the third test, the hospital found the second test which was also abnormal. That was when I started to feel pure unadulterated panic. I prayed like a child, and I promised myself that I was going to make eradicating galactosemia my life’s mission if it turned out my daughter didn’t have it.

The results of the third test came back closer to normal but the doctors still weren’t comfortable, so they sent us to the only pediatric metabolic geneticist in New Jersey where our precious baby, after having been pricked in the heel three f**king times already, now had to have blood drawn from a teeny tiny vein in her arm. My husband and I also had to have blood drawn.

We arrived at the geneticist’s office accompanied by every relative from both sides of our family. There were like 24 of us sitting in the waiting room. We all had print outs from the Internet, we all had questions, and we were all prepared to give up milk, cheese, yogurt, and ice cream for the rest of our lives should this new member of our family not ever be able to know how delicious they are.

We got through the visit with the geneticist, and then we were sent home for some more waiting. Every time the phone rang, my stomach would lurch. We were still getting cards and presents delivered every day, but there was little joy. Anxiety, fear and guilt reigned in those early weeks, and I felt robbed.

Finally, five weeks after the first phone call, we got the news we prayed for. Our daughter did not have galactosemia–she only carries the gene, which explained why the test results were wonky. My husband carries the gene as well, but I don’t, and so we opened our front door and kicked galactosemia out on its ass forever where it belongs.

My baby sadly never breastfed again, but I made up for it with my second child who had a milk protein allergy completely unrelated to galactosemia and breastfed until he was almost two, and my last who breastfed another 12 months. I can now say without any qualms at all that breastfeeding is the worst thing in the whole world and I don’t know why anyone does it (not really).

My daughter is turning 12 on February 1 and I never did make eradicating galactosemia my life’s mission, but I have donated several times to the Parents of Galactosemic Children, Inc., which has since been renamed the Galactosemia Foundation. They provide critical support to new families dealing with the heartbreaking challenges of galactosemia and network with professionals to inspire treatment and advanced research. I will be donating again this February 1. I hope you will consider donating, too. Here is a link.

My Man and his Cold

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At the end of every year, my husband gets sick. Usually, it’s a cold. Sometimes it’s a stomach virus. But no matter what it is, he is convinced he is dying.

I’m not sure why he acts this way. I mean, no one likes getting sick. And yes, I get stressed worrying how I am going to continue meeting the needs of my family while operating on only one cylinder, but previous experience tells me my ailment will most likely be temporary and I can rest knowing that I’ll be serving drinks and cleaning urine from the toilet seat again in no time.

My husband, however, develops amnesia with each cold or virus he gets and forgets that they usually aren’t fatal. A nervous person by nature, my husband hits such high levels of anxiety when he is sick you would think he and he alone is responsible for the earth’s rotation.

This is what happens, in chronological order, when my husband’s throat gets a little scratchy:

1. “I feel something…”

This is the beginning stage of his illness and usually comes after one of our kids has been sick. It is a warning that soon he will fall like a moose that’s been shot from behind. Also, take a look at the calender. If it’s anywhere between January and November, his sickness probably won’t progress beyond this stage and as his wife, you can relax. If it’s December and you need him to help you get the house ready for Christmas, you better get ready because he’s going down.

2. “I can’t afford to get sick…”

My husband works from home and conducts most of his business over email. But a cold will cause his voice to sound slightly different, so clearly, this will cause him to lose thousands of dollars in deals.

3. “I’m burning up…”

He will claim to have a fever, and when I look at him, he might in fact look a little pale. After giving him a thermometer and confirming a body temperature of 97.4, however, I realize his pallor is being caused by panic and fear not by sickness.

4. “You think I’m faking don’t you?”

He gets angry at the thermometer, and demands that I stop laughing. He is not faking, he really does feel sick, and he can’t understand how it happened. He really, truly, does not know how a germ can invade his body, since he is not human but a Martian cyborg.

5. Elephants and fire ants

He will go to bed at sunset, roll over twice, and wake up 14 hours later complaining about how poorly he slept. He will turn to two analogies I have heard over and over again since we were married 13 years ago: “I feel like an elephant is sitting on my chest, and there are fire ants in my throat.” I cannot roll my eyes hard enough when he hits this phase, and suddenly the baseboards are screaming at me to clean them.

6. “Here is where I keep all the important documents.”

This is when I feel a little bad for laughing, because he will finally register a fever of 100.3 and officially be a sick person. He stops in his tracks, falls like the moose I described above, and prepares for death by sleeping all day for four days–on the couch, in the middle of everything. There could be an earthquake, a hurricane, and a newborn infant in the living room all at the same time but he won’t budge. As you might guess, this phase is my least favorite.

7. “What’s a doctor going to do?”

More elephants are sitting on his chest, the fire ants have built a full-fledged colony, and he is looking beyond me to the light glowing in the distance, so now I know I have to call the doctor. Except he argues with me because what he has is probably so rare and so serious there is no doctor in our area equipped to deal with it, so there is no point in going. Better to just die in peace at home on the couch, moaning.

8. “The doctor said I have a virus and need to take an antibiotic.”

Honey, that doesn’t make any sense. An antibiotic only kills bacteria.

9. More sleep

After he gets his antibiotics, I insist he relocate to our bedroom, where he will sleep so hard for so long it’s like he’s not even home. This is when I love his sickness. I will play annoying Top 40 music, order shoes from Zappos, and party like it’s 1999 and he won’t have any idea. A day or two later, he will finally emerge from our bedroom, kind of like a butterfly but much bigger and with a lot more body hair, and vow to embrace life to the fullest, because you never know when it will be over for good.