this is motherhood {too}: A fourth child and an uncertain diagnosis (NF1)

September 26, 2013, Michaela Evanow, 18 Comments
Logo_04_21_2014_102726AM
My story starts about 20 months ago, when I found out my youngest of 4, has Neurofibromas 1–NF1 for short, also known as von Recklinghausen disease. It’s a progressive neurological disorder.
We were at a simple check up with the paediatrician, just for a flat spot on his head. And it turned into…I think Oakley has a terrible disease. He was diagnosed at 10 months old, and I spent many months missing out on his babyhood, because I was struggling with the grief.
NF1
Fifty percent of NF1 cases are genetically passed on and fifty percent are spontaneous mutations, which is what my son Oakley has, since my husband and I are not carriers.
When I first found out I felt like someone had punched me in the stomach. My perfect boy now has an uncertain future, filled with “what ifs” and “no one knows”. You see, with this disease no one can tell you how bad or how mild it will be, until it happens. Most days I try not to think about it because as of right now he really is doing great, and I’m thankful everyday.
I couldn’t imagine life without him.  He is my little charmer.

We have been to the children’s hospital more than I have ever imagined having to go. You really never think about these things when you are pregnant. At least I didn’t. I never wanted to know which section of the hospital you go to for an MRI or which floor Genetics is on. When we go to the hospital, I’m always hoping for a different out come, but we always leave with the same result.

I have come a long way although I’m not there yet. I melt into a puddle at the very thought of his future.

But with each day comes new hope.

As for my journey with him, I feel  confused and lonely, especially since I don’t have any friends who have a child with special needs. My family and friends are wonderful but no one truly understands like another mother, who is going through struggles like this as well. I am fearful for his future.

Will he find someone to love him? Will he get married? Be able to have children?
He will now have a 50% chance of passing this on to his kids.
Will he be angry at the world for being dealt this card? Most of all, will he be…happy?
I take each day at a time, and try to be positive but every once in awhile those negative fears and worries rear their ugly heads and it feels so hopeless.  Then I tell myself that God wouldn’t  give me anything I couldn’t handle and I’m his mommy for a reason.
Yes, you and I, we do have a different road, a tougher one, a bumpier one, but some times I think maybe…a more rewarding one.
In a different kind of way.
-edited by Michaela.

18 Comments

  • Reply serena wright December 18, 2014 at 7:56 AM

    Thank you for your post. My son was diagnosed with nf1 when he was 9 months old. Hes been blessed with great health thus far. He does have a lot of the tumors on his skin though. I wake up everyday and have so much guilt, worry, and frustration. I love my son so much and don’t want him to suffer. I am very positive about everything and try to not let negativity of the unanswered questions get to me. At the end of the day you brought me some form of peace by knowing there are others out there that fill the same. God bless u n ur family.

  • Reply Kara August 23, 2014 at 8:25 PM

    This touched my heart. I was born with NF1 and went through the visits to countless specialists waiting for when some bump or lump would show up, but through those days of worry and fear I have had such an amazing life. I am 26 now have been in an amazing relationship with a wonderful guy for over five years and although I have had more mris and CAT scans than the average person, I have so far not had to deal with the real issues many with NF suffer from. I have no tumors (that I am aware of) and while I do suffer from some issues like some physical pain, the fear of not knowing has been the biggest challenge for me. I was watching a vlog today about a woman who was going through a form of ivf to eliminate the chance of having a child with nf, and I really can’t pass judgment because the fear and hurt a mother has for her child must be enormous. It did however make me think, about what if my mom had the chance to ensure her baby didn’t have this genetic disorder? I would cease to be and all of the amazing moments in my life would of never come into existence. Some days will be harder than others, but I am sure you are already aware of the light the you have in your life, people with NF can go on to live very normal lives and until you cross those bridges you just gotta stay a float. It will never be easy but where one person has NF another has cancer and another has something else. I truly believe we are dealt the cards we know how to play, and the memory might be foggy but it usually clears and things get easier.

  • Reply Janice March 31, 2014 at 6:21 PM

    Wow wow!!!! I never checked and read all of these amazing wonderful comments until now!!!! Thank you thank you!!! Such encouragement and words of wisdoms that mean so very much to me, I am so thankful!!

  • Reply Cairsti October 14, 2013 at 12:27 PM

    Hi Michaela! I was diagnosed with NF1 shortly after my 6 week infancy check up. I am 32 now and the mother of three beautiful boys ages 15, 12, and 6; none of which are showing sings of NF. I understand how frustrating this diagnosis can be since there is truly no average, but have faith! Oakley can live a very normal and happy life! There are some amazing online communities out there for Janice to reach out to. “The Kids With Spots” is a great one and so is “Beauty Mark Nation” , they both have facebook pages as well as websites. I’d recommend being open with Oakley abou his NF, chances are he will know he is a little different. As a child, I had many spots and its important to remember that children do not have filters and he will be asked about them on the playground. His ability to answer will make the difference in the reaction he gets from his peers. By the time I entered kindergarten I was able to explain my spots on my own when my classmates asked, and with my answering their questions it was no longer an issue. In fact, it may have even helped me make friends- after all, how cool is a 5 year old that can not only pronounce “neurofibromatosis” but also explain it ? 😉

    • Reply Michaela. October 14, 2013 at 1:00 PM

      So cool! Thanks for sharing some of your story!! Amazing. Want to write more? 😉

  • Reply Bairbre September 30, 2013 at 12:44 PM

    I also have NF1. I am a 34 year old crazy Irish chick. I have a degree in nursing, worked in missions for several years and am about to marry a wonderful man in 12 days time! Please, please be careful about doing searches on line as you will inevitably find the worst case scenario stories and distressing pictures. Michaela, please pass on my email or suggest me as a friend to her and I can share more of my story with her.
    Yes, NF is a chronic, neurological condition, but it is totally possible to live a completely normal life! It is not a death sentence and does not have to control or dominate your life!

    • Reply Michaela. September 30, 2013 at 1:11 PM

      Hey Bairbre.
      Wow, what a small world. I will pass along your info if the mama asks for it! As with all diagnosis, searches online are really bad, but sometimes they happen. And that’s okay. It’s still a process this mama has to go through, since the diagnosis is still fresh for her. But, BUT that is SO awesome to hear! Yes, there are so many stories that build hope, and perhaps that’s why she shared her story 🙂 Thanks Bairbre!

  • Reply Inkling September 26, 2013 at 9:03 PM

    My best friend (who incidentally lives with Crohn’s) is married to a man who has NF. He also happens to have multiple university degrees and works as a pastor. His father and sister have it as well. My best friend and her husband have three children. Two have NF1. The firstborn who has it was born at 28 weeks and was told he would pretty much never do anything. He’s a long distance runner and one of the most amazing teens I know. Watching him deal with what NF looks like for him is inspiring. His little sister also has it, and she has several complications from it that have required a lot of endurance from her. But she is thriving and amazing. I would love, love, love to connect Janice with my best friend, who could then connect her to amazing group of mamas who all have children with either NF1 or NF2. I know the group contains women who knew their children had it genetically and those who are grappling with the surprise of a spontaneous mutation, and Janice would find loads of love and support from those mamas. Some of their children deal with very real physical challenges, while others have mild symptoms. There is so much variation with NF, and the unknowns can be very scary. But there is also so much hope even in the midst of very real challenges from NF. If Janice would want to connect with my friend, please feel free to give her the email I used to log in here.

    • Reply Michaela. September 26, 2013 at 9:14 PM

      Wow. This is such a great resource. I’ll pass along your info to Janice if she likes! Thanks again 🙂

  • Reply Kali September 26, 2013 at 7:25 PM

    Thanks so much Janice for sharing your story with honesty and vulnerability- it gives others the freedom to do the same! Much grace & peace to you as you navigate this unexpected turn in the journey.

  • Reply Crystal C September 26, 2013 at 6:36 PM

    My sister has NF1. She is a thriving 29 year old who won teacher of the year at her school last year 🙂 Of course, she’s had multiple surgeries, but it’s part of her amazing testimony. Lots of people look at her and are just amazed at how she handles it all with grace. God has called you to be a mommy to this little boy, and I’m sure he will thrive!

    • Reply Michaela. September 26, 2013 at 6:40 PM

      Awesome! Thanks for sharing this Crystal!

  • Reply Alisha September 26, 2013 at 12:45 PM

    This is a daughter. I was diagnosed with a rare, genetic condition when i was 4 months old and while its not like your sons it is life altering and a serious condition i will have for the rest of my life.
    I’m 16 now, a senior in high school, and i love my life. I have amazing parents who never gave up on me, and i have a team of amazing doctors who make my life as “normal” as possible and remind me to never let my condition hold me back.
    I hope that hearing this gives you hope for your son.
    I am so thankful for the gift of life my parents gave me and that they pushed me, supported me and inspired me. I’m not their sick child, i’m their daughter and their belief that i am not my illness gives me courage to see it too.
    I’m praying for you as you walk this journey.
    Love from, a daughter (Alisha)

    • Reply jack nash September 26, 2013 at 5:20 PM

      Wow, Alisha, thanks for your comment… you have an amazing perspective and attitude and I love that you are out to encourage and give to others… that is the key (secret). Wonderful!!!

    • Reply Kali September 26, 2013 at 7:25 PM

      Wow, what a story! Thanks for sharing Alisha, you are breathe hope!

    • Reply Michaela. September 26, 2013 at 9:15 PM

      You are awesome Alisha! Sounds
      Like you have great parents too!

    Leave a Reply