A year at home with Lyla – Me vs. NF1

October 22, 2014 at 2:56 pm 14 comments

In March of 2013, we received the news that our daughter, Lyla, who has NF1 had a tumor along her optic nerve in her brain. And so we learned that NF1 likes to keep life full of surprises. At the time of this news I had Lyla, who was 4, and my son, Henry, who was 7 months old. I was working full-time as an attorney for the Legal Aid Society.  I was burnt out at my job, it was gritty and hard and sad. But it was also rewarding and, I still think, important. Like a lot of parents, I already felt overwhelmed, but with Lyla’s diagnosis I felt completely lost and I am not sure that the word “overwhelmed” does that lost feeling justice.

Veteran parents will say over and over you have no control when it comes to your kids, you just do the best you can. While that is in part true, parents with kids who have significant health issues know better than anyone what lack of control feels like.  It is scary and it is what keeps you up at night trying to learn everything you can – what to feed your child, what sleep patterns are needed, what specialists you must get your beautiful daughter in to see to stop this thing from taking over.  You obsess and research and try to feel like you can control at least a small piece. Because with that control, comes hope and hope, well, that is something we desperately need.

I started therapy fairly soon after the news, I just had so many fears that I couldn’t talk about with family. And I worried about how to mother my child who now had this life changing diagnosis. What do I tell her? How do I keep her life normal and happy? How do I not cry everyday? In my second therapy session I talked about my lack of control, my type A personality need for control and how all of this made my world seem so impossible. And the therapist asked me one simple, straight-forward question  “What does control look like to you in this situation?” And I answered within a split second “Staying home with her.”  Truth is an amazing thing. It can sometimes be so simple that it is stunning.

In October of 2013, exactly a year ago, I quit my job and became a stay at home mom.  This transition has been funny for me as a person, it certainly would surprise my younger self. I have gone from negotiating with opposing counsels in court to negotiating with a two year old and I really can’t say who is the tougher opponent.  I have gone from meetings about legal strategy to conversations about what would happen to our bodies without bones and why Woody lives at Disney World and the possible ways we could catch fish in our land locked town to feed cats we meet in the neighborhood.  I have gone from being someone I thought was important to being someone who truly is important to the two most important people in my life. That value shift is profound.

I write this because there are a lot of parents out there right now getting that initial NF1 diagnosis or finding out about that new NF complication.  There are a lot of parents out there right now sitting and planning and researching and trying to find that control, trying to find what will make this livable.  And so as my wise therapist asked “What does control look like to you in this situation?”

Your answer is not necessarily my answer, and financially not everyone can make the choices I have.  Your answer needs to fit you and your family.  It is an important answer because like it or not NF1 is hard.  It is excruciatingly powerful.  So you have to be ready, ready for the best and, yes, the worst.  Maybe control for you is making your child eat berries everyday for breakfast (they allegedly stop tumor growth). Maybe control is running a marathon for NF awareness. Maybe it is staring at your child for a few minutes each day just to see that they are doing okay.  Whatever it is you need to feel that small amount of control, do it.  It matters. It matters because honestly you matter.

Best wishes to all my fellow NF families and my fellow control freaks. And, as always, end NF.


*For more on NF1 please visit the Children’s Tumor Foundation 


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14 Comments Add your own

  • 1. Mary Ann Hubbard  |  October 22, 2014 at 3:23 pm

    Beautifully written by a lovely lady!

    • 2. Emily C  |  November 3, 2014 at 4:44 pm

      Thank you Mary Ann:).

  • 3. Claire 'Word by Word'  |  October 22, 2014 at 3:28 pm

    Such an important and fulfilling job, thank you for sharing that and enjoy everything your daughter has to teach you. 🙂 Children are such a gift.

    • 4. Emily C  |  November 3, 2014 at 4:45 pm

      They are a gift, even when they are being crazy :).

  • 6. bizigal  |  November 20, 2014 at 11:21 pm

    My baby with NF is 20 now. You will get through it. But my advice, don’t let the school tell you what they are going to do. You tell the school what you want. Good luck.

    • 7. Emily C  |  November 21, 2014 at 1:13 pm

      Thank you!!! It is always good to hear from experienced NF parents. It feels like a lot of fumbling around trying to get it right.

  • 8. Erin Murphy  |  March 8, 2016 at 1:27 pm

    Thank you for sharing! My daughter has NF1 diagnosed at 4 months. Her father has a mild case of it. I am not worried but it is good to know some things that can happen.

  • 9. Georgia S  |  May 22, 2016 at 5:44 pm

    Really heartbroken.My son has Alveolar Rhabdo in relapse.Fighting 1.5year.I understand you completely.Wish one day the cure is found

    • 10. Emily Swanson  |  May 24, 2016 at 9:50 pm

      I am thinking of you and your family.

  • 11. Veronica Williams  |  November 20, 2017 at 5:30 pm

    Thank you so much for this❤️!! My son is 5 years old and was diagnosed when he was just a baby…I have my moments when I just break down and cry because I’m freaking out and overthinking everything, researching like crazy and then I have days where we just take it day by day and say “Hey!, all is good!”. My son is such a happy kid and it kills me to think that any day things may get worse for him. Thank you again for sharing!

    • 12. Emily S  |  November 21, 2017 at 9:27 am

      It is such a roller coaster ride and living in the moment is not usually my speciality – but I am getting better at it. I hope you have more good days than not. And I know your son has an amazing life ahead of him.

  • 13. Michal S.  |  March 14, 2018 at 11:08 am

    Thank you so much! I was recently diagnosed with NF1 and if that wasn’t terrifying enough, I noticed the CAL spots on my youngest son and the weight and burden and guilt even has been suffocating. We are early in our journey and so much of what is out there is beyond scary. Thank you for your encouragement–I appreciate you giving a small look into your world to help lift up other parents!

    • 14. Emily S  |  March 14, 2018 at 4:26 pm

      Michal- I am thinking of you. I know there is little that can be said to make you feel better but just know that I, like a lot of folks I am sure, are sending you prayers and positive thoughts for you and your son’s future. – Emily


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