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.

If Moms Had 3D Printers

A shortened version of this originally ran on Scary Mommy. Here is the link.

Supposedly, 3D printing is The Next Big Thing and has the potential to change the world. Without getting too technical, 3D printing is a process by which you design an object in a software program, send the data to what is essentially a robot in a box, and watch in awe as the robot builds your object layer by layer using various materials, such as liquid, paper, powder or metal.

At this point, most of what I have read focuses on how 3D printing promises to revolutionize the shipping industry. For example, a captain piloting a giant ocean cargo liner across the Atlantic today is SOL if an important part in the engine fails, but once he has a 3D printer on board, he can print an exact replica and be back up and running in 12 to 24 hours. In the medical field, researchers are trying to figure out how to print internal organs and body parts using a patient’s own cells, and aerospace engineers are hoping 3D printing can lower some of their manufacturing costs.

That’s great, but has anyone given any thought to how 3D printing could help all the Moms out there? I mean, collectively, we are an enormous group–there are probably more Moms in New Jersey than there are shipping captains, thoracic surgeons and aerospace engineers in the whole world. If I were trying to sell 3D printers, the first group I would target would be Moms for sure.

Seriously, think of the possibilities. Off the top of my head, here are 10 things I could make with a 3D printer:

  1. all the missing Legos
  2. clean soccer uniforms
  3. a gift for the birthday party that starts in 10 minutes
  4. wine (duh)
  5. coffee
  6. AA Batteries
  7. the missing TV remote
  8. the sock monkey we lost on vacation in 2012
  9. Super Nanny
  10. dinner for five

Years ago, when my children were babies, I would have set the 3D printer on fire by using it so much. Here are 10 things I wish I could have printed back then:

  1. a clean binky
  2. diapers (duh)
  3. the rubber thing that attaches to the underside of the sippy cup lid so it won’t leak
  4. socks that stay on chubby infant feet
  5. a nursing bra that fits properly and provides support
  6. ear plugs
  7. scratch-proof DVDs
  8. a reliable birth control method
  9. a refrigerator lock my kids can’t beat
  10. amoxicillin

How great would it be if Moms could have all the above at the touch of a button? I can’t wait until the technology improves even more so that I can print a few other things I desperately need, like:

  1. eight hours of uninterrupted sleep
  2. some patience
  3. a clue
  4. a life
  5. focus
  6. motivation as it pertains particularly to folding laundry
  7. energy
  8. perspective
  9. some fashion sense
  10. a moment of silence

 

 

 

 

Don’t Tell Me to Pick My Battles

Whenever I whine to someone about how my kids don’t listen, he or she will invariably tell me I have to pick my battles. I nod in agreement, but I never do it. I never take out my master list of daily battles and whittle it down to only a few. The reason for this is because it’s very overwhelming; there are just too many battles to pick from, and they all seem really important. How many am I supposed to choose anyway? And what is the criteria everyone else is using to determine which battles stay and which ones go?

For example, I feel very strongly that I need to limit the time my daughter spends scrolling through mindless Instagram feeds on her iPod or my son plays fake basketball on the Wii, but I feel equally as strong that tortilla chips are not to be eaten whilst on the toilet. One might be considered a big deal, the other small, but I can’t be expected to choose between the two. It’s just too hard.

Bedtime is something my kids fight every single night, but I can’t let that one go. If they don’t get enough rest, they won’t be able to adequately process what they are learning in school, or they could compromise their immune systems and get a nasty enterovirus. No thanks. This is a battle that is definitely worth fighting. But what about the twerking lessons my oldest child has been secretly giving to my other children in the basement over the last few weeks? Am I supposed to just laugh that off? I can’t. It’s not going to be as funny when I find out that my six year old has been teaching all the other six year olds in the neighborhood how to pelvic thrust like a pro.

Homework has to be completed every night and it has to be completed correctly. If something is wrong and a little extra help is needed, it will reveal itself through homework and eventually be rectified. I have to stay strong when it comes to homework, but am I really being a good mom by letting my last and youngest kid walk out the door wearing a shirt stained with yogurt because I have already hit my battle quota for the week? The answer is no.

The way I see it, my kids have to do it all. They have to brush their teeth, but they also can’t leave the light on after they leave the bathroom. They have to walk the dog they begged me for even though it is raining AND they have to go to soccer practice even though they would rather have a playdate. Also, they cannot physically assault each other over who ate the last piece of gum AND they can’t have a snack when I am in the middle of making dinner.

My point is this: picking battles is virtually impossible. If I cross a few of the seemingly unimportant ones off my master list, I send the message that my kids don’t have to behave all the time, just sometimes. It’s inconsistent and confusing. It might sound like a whole lot of nagging, harping, and yelling, but combined with an equal amount of love and positive attention, that’s simply the sound of mothering. Instead of telling moms to pick their battles, maybe we should encourage them to simply forge ahead, stay strong, and have some faith that the battles are in fact worth it. Every last one of them.

On Death and Dying (and Pouring Drinks)

IMG_2985From the moment they are born, kids start screaming for something to drink and as far as I can tell they don’t ever stop. On average, I pour my kids about 26,000 drinks a day. I am not exaggerating. There are so many drinks I have to pour I can barely do anything else with my life, and as you can imagine I’ve become very resentful.

I’ve realized that what goes on with me psychologically after I hear the question, “Mom, Can I Have a Drink?” is similar to what Elisabeth Kübler-Ross identified as the five stages of grief 45 years ago in her groundbreaking book, “On Death and Dying”:

“Mom, can I have a drink?”

Denial: There is no way he is asking me that question. It’s not even lunchtime yet and he’s already had chocolate milk, lemonade, and a juice box. I am just going to sit here and pretend to be deaf. If I’m lucky, he’ll go away.

“Mom, can I have a drink?”

Anger: I don’t believe this. I just sat down for f**k’s sake. “No! You cannot have a drink. You can’t. You don’t need a drink right now. You aren’t even thirsty! There’s NO WAY! You JUST HAD a giant glass of lemonade, and you stole a juice box from the outside fridge right before that. You simply don’t like to see me sitting down. GOD FORBID I ever sit down. Do you ever ask yourself why you don’t like to see me sitting down? Because I’d really like to know your reasoning. Did you know that when a Mom sits down, she still loves her children very much? Did you know that? WHERE IS YOUR FATHER????”

“Mom, can I have a drink?”

Bargaining: “Ok, look, if I give you a drink NOW you can’t have any drinks LATER, do you understand? I will give you a drink now if you PROMISE not to hound me for any more drinks today. OK? One more drink today, and that’s it. Got it? And if you are good and you don’t drink anything else for the rest of the day, I will give you an extra special drink tomorrow! OK? Do we have a deal?”

“Mom, can I have a drink?”

Depression: Oh my God, what happened to me? I used to eat at restaurants owned by Bobby Flay. I used to travel to exotic lands and meet exotic people. I can’t do this anymore. I need a nanny. But then I would need a job. Who on earth would hire me? I haven’t worked in 11 years. My brain functions at a third grade level on a good day, and I have lost all tolerance for bullshit. Maybe I can be the lunch lady at school. But then I would be getting drinks for the entire student body! I can’t win! 

“Mom, can I have a drink?”

Acceptance:  “Ok, here. Here is your drink. Now don’t spill it.”

First Day of School Protocol

We just got an email from our school’s principal entitled First Day of School Protocol so I thought I would share my own personal First Day of School Protocol:

1. Drop the kids off and skip all the way home clicking my heels every few steps and singing the hills are alive with the sound of music.

2. Walk from room to room and soak in the silence. Explain to the confused and frightened dog what silence is.

3. Start cleaning the house with a fury not unlike that of a mental patient.

4. Give myself a yogurt, honey and turmeric facial.

5. Take a long hot shower without worrying about any loud bangs and/or screams coming from downstairs.

6. Get a pedicure. Tell everyone in the place that this is the first day of the rest of my life.

7. Forget I had to buy some things for my last kid’s birthday party at the bowling alley this weekend and fly to Party City, hoping I will make it home in time for pick-up.

8. Get to pick-up technically on-time but late because all the on-time parents have taken the good parking spots. Run the rest of the way, screwing up the pedicure big time.

9. Ward off the evil eye I am getting from my second child for being late even though I was technically on-time and start pressing him for details about his first day in third grade.

10. Drive home waving to everyone else who is walking. Allow my kids their after school snacks, realizing that I forgot to bake the muffins I really wanted to make to mark the beginning of a new school year. Oh well, there’s always tomorrow!