Mom's are crazy. There's something that happens to you when you become a mother that just makes you lose your mind a little bit. Bef...

From Daughter to Mother

Mom's are crazy. There's something that happens to you when you become a mother that just makes you lose your mind a little bit. Before children, women get to do all kinds of things like spend hours getting ready, go out and party, relax, spend money on themselves, etc. without any consequence or guilt. Then we become mothers and we're lucky if we get a moment of complete silence in a day to just sit and close our eyes. But we love our children so much, that we'll trade all those things again, and often times we do by having more than one child! It's total insanity.

But all of these things can't possibly be appreciated fully until you become a parent. Before children, those moments of silence don't mean anything special because we have so many of them. Those nights out on the town aren't rare so there's nothing to savor. You truly do not understand how to cherish time until you watch your tiny infant grow up. And more than anything, you don't appreciate and love your own parents fully until you have children of your own. Then you finally get it. You finally know how much they love you. While you're in the middle of life with your kid, you can't help but stop and go, wow, my parents did all this for me. They love me more than I ever knew.

For moms, we start to appreciate this from the moment we find out we're pregnant. Suddenly we have to worry about everything we put into our body. We have to gain an exorbitant amount of weight in a very short period of time, and then magically lose it in a few weeks. We have to hang over the toilet, puking our guts out or at least thinking we're going to, every day for 3 to 9 months. We have to give birth, whether that entails hours of hard labor, or undergoing major abdominal surgery, either way, it's usually the most painful experience of our lives, as are the next 6 weeks of recovery. But still, we'd trade all these things in a heart beat just for the chance to hold our tiny newborn baby just one more time.

Mothers are truly amazing beings, and you are no exception. From the moment you found out you were pregnant to this very minute, you've loved me with all of your heart. It was obvious in everything you did. Between staying home for 5 years to be an amazing mom and housewife, to working 12 hour night shifts at the hospital for years, you were always working hard for us. You would wake up several hours early before one of these shifts to drive me over an hour away to go to gymnastics classes. And you did this for me for years. You spent an untold number of hours cooking and cleaning, whether you were home full-time or not. You toiled away for months on projects for Megan and me so that we had homemade gifts for birthdays and Christmas. You managed to make every holiday a special occasion, whether it was the tooth fairy coming to visit, the Easter bunny hiding eggs, or Santa Claus bringing gifts, they were all magical and exciting for us.

On top of doing the "traditional" mom jobs, you also managed to teach me how to be a feminist. How to believe in equal rights for women and to never allow a man to treat me poorly. You experienced plenty of sexism in your life and stood up to it and told us the stories, so that we didn't have to go through these things. You taught me how to have a voice and be confident that I was just as smart and valuable as any man out there. You taught me that I was a woman, but I didn't have to be girly if I didn't want to. I could just be me, not society's version of me. I can't tell you enough how grateful I am that I don't feel obligated to spend so much time and money on the superficial things our society tries to demand of women.

You taught me about love and respect for men as well. That I can be in a relationship and be independent too. Your relationship with dad showed me that happy endings aren't just in fairy tales. You guys showed me that you have to communicate about everything, even if you're going to disagree, you still need to tell each other everything if you want to have a lasting relationship. If it wasn't for you and dad, I would have never had the confidence or belief in marriage that I do now.

You spent lots of time teaching me everything I wanted to know, and I wanted to know about everything! You made sure I had lots of opportunities to learn whatever I wanted, which was everything from girl scouts to sports and music. You were always there for me, whether it was help with homework,  or advice about friends or boys. And you're still there for me today. You and dad spent over 20 hours in a car just to see me run my 10k! You were always so proud of me for each of my achievements in life and you made sure I knew that. I've never had to go through life striving to get your approval because I've always had it.

It's hard to list out all the things you did for me because you did everything a mom should do and so much more. But most importantly, you never hesitated to show me all the love you have for me. I am forever grateful for you and your beautiful and kind heart. I hope you know how much I love and appreciate you. Thanks for being you. Happy Birthday!


The geneticist sent a follow-up letter about Sebastian's results with a little more information. I think it was intended to be a review ...

Optimistically Misunderstood

The geneticist sent a follow-up letter about Sebastian's results with a little more information. I think it was intended to be a review of what we'd discussed in his appointment. But a piece of information jumped out at me and caught me off guard. It said that most people with NF1 develop neurofibromas, or tumors on the nerve sheath. I had been holding onto the statistic that only 15% of patients develop tumors so this didn't sound right. Did I totally misunderstand what they said? Was Sebastian going to get tumors? I called the genetic counselor to ask about it.

The geneticist did say a 15% statistic, but what I misunderstood was what tumors she was talking about. It applies to the optic glioma, or tumors on the optic nerve, which is what the eye exam will be looking for. During this phone call I remembered the discussion in the office, we were discussing brain tumors specifically, and she said these are usually the only kind that arise in NF1 patients and they are rare. So while this is good news still, the bad news is that most people with NF1 do indeed develop the neurofibromas. They usually start developing around puberty and can continue their whole adult life. They can end up with only a couple or they can have a bunch, there's no way to tell and no way to prevent them. They do not cause any pain or issues, they are not cancerous, and they do not usually need to be removed. It's just a cosmetic issue.

We sigh with relief when we hear something like "just a cosmetic issue". But when you think about what that means for your teenage years then there is no sigh of relief but instead a knot forms in your stomach. When my child's a teenager he might end up with tumors all over his body? Ok well maybe we can hide most of them with clothes. What about sports and gym class? Kids (and adults) can be mean, there's no argument there. I cringe to think about what could happen to him. What about when he's an adult? Even as adults, most of us are self conscious over minor things, fat, stretch marks, cellulite, freckles, moles, zits, imagined blemishes of nothing. Imagine having something like tumors to add to that list and it's hard to picture having a healthy adult relationship. Let alone, even if he finds a decent human being, he'll have to worry about the fact that there's a 50% change he'll pass it on to his kids.

How can I possibly raise him to have enough self-confidence to not let any of this bother him? I have no idea, but I'm sure going to try my hardest. Step 1 is to not think of the worst, because we truly do not know if it will be bad or not. Step 2 is for Brian and I to have as much self-confidence as possible so that he has good examples to watch, because let's face it, "do as I say, not as I do" never really works, no matter how much we wish it did. And Step 3 is of course to continue reminding myself that it could be a lot worse.

The letter also reminded us that they do not think Brian or I have this disorder, but there is still a 1% chance we could pass it on to our children. They say a batch of eggs or sperm could have the mutation, so even though we don't have it, we could still have more kids with it. Is 1% enough to even worry about? I think not.