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Advice from an NF Parent to Other NF Parents

By December 7, 2020January 17th, 2024Featured

We’re honored to share this essay from an NF Parent.

“There’s something wrong, I would like you to go see a specialist.” As a parent, this has to be one of the scariest things you can hear from your pediatrician. Then, being told your child has a rare genetic disorder called neurofibromatosis- how does a parent even begin to wrap their head around that information?

Now that I am years into this, I’d like to share parts of my journey, in hopes that I could be of help to someone else. If there is one piece of advice I can give you, it’s don’t Google anything. I know this is hard, but Google has a way of finding the worst possible scenarios and sharing them; even if you type in “I have a cold,” Google could find a way to tell you that you have the flu or possibly something worse.

It’s been years of me processing the information that my child has NF and will always have NF. NF is not some disorder you can grow out of; she will have to live with that diagnosis forever. It is my job as a parent to help her, guide her, and make her into the best version of herself she can be. By the way, that is my job as a parent for all my children, not just her. But it takes on a deeper meaning for a child with a diagnosis.

Who should I tell? Who should I not tell? Who will help me and who will judge me? Will my daughter be judged? Will she be treated differently? These are all feelings I have struggled with for years. I’ve put together these thoughts as steps I’ve gone through as part of this process.

Step 1: Denial It can’t be. It’s not fair that my child will have a diagnosis forever. It’s not something that will ever go away; it will always be there and be a part of her. Denial is part of the process, it’s the hardest one to stomach, but there’s no denying that it’s there. It’s a typical expected reaction to the news- this is the first step.

Step 2: Guilt “I’m her mom, I brought her to the world, so clearly this is my fault.” When my daughter was first diagnosed, I went to a healer. Honestly, I just looking for some answers and some reasoning, as I was still struggling with step one. She grabbed my hand, looked into my eyes and said, “This is not your fault.” I couldn’t believe that she had said exactly what I was thinking. I burst into tears, and that’s when I realized this was not my fault. There was nothing to be guilty for. Life is full of unknowns, and we can’t understand everything, but in this equation there is no room for guilt, and that was something I had to learn.

Step 3: Acceptance After denial and guilt comes acceptance. Once you can adjust and understand the situation, you have to accept. Come to terms with it, accept it, and keep your faith in God. There is a higher being, and that is part of the process. When it comes to challenges, it’s important to accept that God only gives you challenges you can handle. There was actually a moment (again where I burst into tears), I looked at my husband and said: I accept. I’ve had to do this in other aspects of my life- when I had a miscarriage, when another child got a crazy Staph infection, when another child had an allergic reaction to my medication. Close your eyes, take a deep breath and just accept.

Step 4: Get Involved This is now our reality. What are we going to do about it? We are blessed to live in a time where technology is part of our life. After dealing with guilt, and learning to accept, it was time to get involved. Get involved- find more families struggling with the same thing. Follow science, follow research, and start looking for a cure. Create awareness. This is where we found the Children’s Tumor Foundation- getting involved was part of the process which leads me to step 5.

Step 5: Gratefulness I have met the most amazing people through the Children’s Tumor Foundation. If my daughter didn’t have NF, there is no way my paths would have ever crossed with these incredible people. I have met mothers and fathers who have felt all these feelings; I have met grandparents who have given their grandchildren living with NF the unconditional love and support, that is a huge part of this process. I have met passionate scientists, geneticists and doctors who have dedicated their lives to this cause. But more importantly, I have met many people living with NF and they truly are heroes. NF is a part of their life, but it does not define them. I truly feel blessed to be part of this NF family; I never take for granted that I am not alone, and my daughter is not alone. I am truly part of a larger whole and can always count on CTF to help.

Step 6: Team Work It takes a village. Make yourself a support team that is there for you, your spouse and your child. You are not alone, none of you are alone. If your child does therapy, have the therapists talk to each other. Create a group where everyone is all in this together. Tell whoever you want to tell, keep it a secret from whoever you don’t want to tell, but surround yourself with people who only have your child and your best interest. Also, it’s important to verbalize exactly what you need and exactly what your child needs. It may be just a night off with friends, or help finding a therapist; whatever it is, always ask for help.

Find doctors who understand you, your needs, and can help you in this process. Yes, you will have many many doctors appointments, everything from neurologists, geneticists, orthopedic surgeons, cardiologists, radiologists, ophthalmologists and more. You may choose to fly somewhere to see a specific doctor. There will be many, many MRIs as well; find a center where you and your child are comfortable. Whatever and wherever you choose, just make sure you are comfortable with the doctor, the clinic/hospital and that you feel they have your child’s best interest at hand. The end goal is always to do what’s best for you and your child; always have that goal in mind.

Step 7: Perseverance As a parent, I want what’s best for my child. I have extremely high expectations of her, but it’s my job to push her and to get her there. I can’t even begin to think how many hours, and how much money we have spent on therapies for my daughter: speech, occupational, behavioral, visual, reading and physical therapy. I’ve coordinated the therapies; the therapists have all worked with her, but it’s my daughter who has done all the work. She’s the one that shows up hour after hour, day after day, giving it her all, pushing through and never giving up. She is so determined, and she doesn’t care how many tries it takes her, she will get it done. Yes, there has been blood, sweat, and tears- but she works harder than anyone I know and it shows. But this perseverance has given me its gifts as well- she has strengthened me, she has made me a better parent, and she is constantly pushing me to my limits and for that I will always be grateful.

Step 8: Resentment No, this is not about resenting my daughter, God forbid. It’s about her siblings resenting her- for getting more attention, for getting extra preferential treatment not by me, but by her aunts, uncles, and grandparents, and for being held less accountable. How do you explain to the siblings that their sibling with NF struggles daily in ways they will never understand and will never have to struggle with themselves? How do you explain that some people just want to give her a little extra love because of this? This is a constant battle in my home. One where I try to explain to my kids it’s not that I love her more, but just that at times, she may require more attention, which in turn requires more of my time. As a parent, that is something we always struggle with, with all of our kids. This is where quality time and one-on-one time with your other kids comes in handy. Make sure to set aside a little bit of time to spend with each of your children. It could be as simple as sitting and answering questions for five minutes, or just sitting and watching a tv show with them. Teach your kids the ideas of “teamwork” and “it takes a village.” When everyone understands their position in the family and what is expected of them, it leaves less room for resentment. In a family, each individual has their strengths & weaknesses. Everyone has a role and together you all create a family unit.

Step 9: Fear This is the step that’s always lingering, just sitting there messing with your mind. The “what ifs.” The ones you’d like to make disappear, because if you think about them, they’ll make you mad. NF doesn’t affect us on a day-to-day basis; yes, when we have a parent teacher conference, or a new therapist, or an evaluation, or the occasional MRI, but not on the day-to-day. Life is full of unexpected events, there’s no point of sitting and thinking about the “what ifs.” Nothing in life is clear or guaranteed, so this is the one that forces you to focus on the present. Seize the day, create amazing experiences and make happy memories. Set small goals: My first goal was for her to crawl. Then it was to go to school. Then it was to graduate kindergarten- this was a huge one where tears streamed down my face, but this time they were happy tears. Small goals help you stay within reality and don’t allow fear to take over.

My daughter never ceases to amaze me. She truly is a hero. She is stronger and more courageous than I will ever be. If you get to be a part of her life, consider yourself lucky. She is the first to help anyone around her when in need. She’s always trying to do as many good deeds, and acts of kindness to all those around her. She is full of life, has an infectious smile, and is always taking on life with a positive attitude. One that’s full of pizza, chips, ice cream, and beautiful things all around her.

Today, after having gone through all the steps, I am proud and lucky to be her mom. I can’t wait to see all the amazing things she will do with her life. I’ll be there by her side, pushing her to be the greatest version of herself she can be- and because I know her capabilities, I know she’ll be exceptional.

I am not perfect, and I have a long way to go. I just try to process everything that’s going on around me in a way that makes sense and might help whoever is reading this. Life is a journey and believe me, there is no one I would rather be on this journey with than my daughter.