A beautifully written and heartwarming letter by a grandmother in our NF community.
You anxiously await the birth of your grandchild with almost the same anticipation as your own child. You get that phone call or you are with them at the hospital waiting with that most wonderful feeling. Hours pass and you pace and finally you know: a beautiful grandson or granddaughter. There is no other feeling like it in the world! You watch your child hold their child and a warm feeling just encompasses you.
Stage 1 of an NF1 Grandmother:
Your child reaches out to you, “Mom I just came back from the pediatrician. Mom there is a problem.” Your heart stops just a little and you breathe because no matter what you’re feeling your child needs you. So, you listen and you hear, “Mom, the baby has neurofibromatosis type 1” and with all the courage you can muster you ask, “What is neurofibromatosis?”
Stage 2 of an NF1 Grandmother:
You learn everything you can. You read, search the internet and reach out to anyone and anywhere you can get information on something that just turned your world upside down and you breathe. You become an advocate for neurofibromatosis. You raise funds for research and you do whatever you can to support the cure of this.
Stage 3 of an NF1 Grandmother (The Final Stage):
You love like never before. You watch this grandchild grow in every way. Their laughter and smile and their milestones in life and school and you breathe through every challenge, every medical test and you hold on! You ride the wave of this disease and you face the challenges head on as a family. Remind your child that no matter what you’re there for them, you feel every pain and challenge they feel. Tell them, “You are and always will be my child and I love you just as much as you love your own child.”