Posts tagged ‘neurofibromatosis’

A year at home with Lyla – Me vs. NF1

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.

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

October 22, 2014 at 2:56 pm 10 comments

What the spots tell us – A parent’s story of Neurofibromatosis Type 1 (NF1)

I am writing this because when we first received Lyla’s NF1 diagnosis we were, smartly, told by doctors that we should not read blogs about kids with NF1.  Those blogs, we were told, are written by parents who have children in the worst case scenario.  I wanted to make sure for the parents who just received this diagnosis that there was something else out there when you google parents and NF1.

I have a beautiful daughter, Lyla. She turned five in December. She is in love with Toy Story, she throws fits, she tells knock-knock jokes that make no sense. She negotiates and barters for what she wants. She loves to IMG_0142read, tell stories and in her best moments she shares with her little brother.  When she curls up next to me my heart melts.

Lyla was born with cafe au lait spots – to the untrained first time mother they look like birthmarks. When Lyla was 18 months her pediatrician became concerned because Lyla had more cafe au lait spots then she was born with.  And we faced our first introduction to the medical term “neurofibromatosis.”  We met with a geneticist and we assured her that Lyla could not have it because this was a genetic disorder and no one in our family had it.  The geneticist looked at us, shrugged and said, in her stoic German accent, “disorders have to start somewhere, right?” – meaning “good genes mean nothing to neurofibromatosis.”  And so as the story goes, the DNA test results returned and Lyla, my perfect, beautiful little girl, was diagnosed with NF1.

NF1 is a tumor disorder. Lyla’s body will tell her nerves to make tumors throughout her life. Where there are nerves there can be tumors. Its potential is limitless. Even if the tumors are surgically removable there is a likelihood they will grow back. NF1 does not rest there – it has numerous other symptoms. Lots of children with NF1 get migraines, they have a 50% chance of having learning disorders, they have a higher occurence of bone disfiguration, they go through puberty early or late, and the list goes on. It is a super disorder with scary potential.

Lyla started having migraines and we found out a year ago that Lyla has tumor on her optic nerve (a brain tumor) and swelling in the middle of her brain.  And so we are now on the track of NF1 where we watch her, get MRIs, and hope, hope, hope that she will remain stable – that we can avoid chemotherapy, that she will be as normal as possible.  No one knows how this ends.

If you are a parent with a child with NF1 you are in a lonely, unique place. People will not understand, nor should they.  You will get mad when parents of other kids are overly concerned about allergies or ear infections. You will long for that type of simple. You will be told by doctors with poor bedside manner to change your expectations for your child’s life. You will be told horrific stories by random people about other illnesses or disorders in some weird attempt to connect with you.  This will be outrageous and ridiculous and you will smile and nod – because what else can you do? You will remember the time before the diagnosis fondly and laugh at what you worried about then (when will she walk, how can I make him use a sippy cup, is this a dairy allergy).  You will watch your child differently and at times your heart will be heavy.  This is your normal, your new normal. No it is not what you wanted or hoped for.  You are now a part of the “I never thought this could happen to me” group – and what a terrible membership.

But you can do this and I know you can because you have to. You will get up everyday and sing silly songs, paint pictures, watch “Toy Story,” snuggle, and  do all the beautiful things that make you a good parent.  Your child will excel because they are loved. Your child will be magic and strong and amazing because that is what special children do.  And no matter how hard it is or how lost you feel now I promise you that some days will be better, not all, but some.   It is okay to be scared for your child. It is okay to be mad. It is okay to want to yell at people who say things like “you seem to be handling it well” because what is your alternative really – you have to do well for your child.

But please know you are not the only one. And I promise I know you never asked for or wanted any of this – and it is unfair. But I also promise that at your weakest you are stronger than you know because this isn’t about you, it is about your child. And let’s keep hoping that there is a cure, better treatment and better understanding of NF soon. Until then, all of my best wishes for your child’s health and happiness.

End NF.

For more information on NF please visit The Children’s Tumor Foundation. 

For more on Lyla and NF1.

February 7, 2014 at 2:51 pm 65 comments


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