Sometimes, it seems like learning to live with this diagnosis involves mastering abbreviations. PWS…FPWR…GH…PT…OT…IEP…Etc. When we talk among ourselves, we understand each other easily, but those outside of our circles would have to take a crash course in PWS or get an interpreter to find their way through our conversations. 🙂
This morning, in a note from a John M., dad to Tommy,18 months, w/PWS, John included the abbreviation–NQTF. For the life of me, I couldn't think what that meant. I went over all the online ones like LOL…BRB…DH…IMHO…and still didn't come up with anything. Fortuately, John was kind enough to spell it out in the next part of the note.
Never Quit The Fight!
The timing for this note was so good. Some days, we all want to quit. We just want PWS to be over, GH shots to be done with, doctors and therapists to be history, and the fear of the power of food to be gone. We want our children to play freely, learn easily, grow steadily, and sleep peacefully. We want them to grow tall, strong, lean, and smart. We want them to love and be loved. We want them to find satisfaction from intimate relationships, meaningful work, and a stimulating enviroment. We want all the things that every other parent in the world wants for their children. We want the life that our children would have had without PWS.
This is not too much to ask!
Just like our children's developmental skills, what we want is going to take a little longer and demand a little bit more of us than is thought to be typical. We can look at what is required of us, throw up our hands, and just let nature take its course. We can lament about how unfair of a hand we were dealt. We can rage against the cruelty of life. We can do any or all of those things, but, at the end of the day, we still have a precious child waiting patiently for us to lay all that aside, pull ourselves together, and be the kind of parents that he or she deserves.
Friends, whatever struggle you are dealing with right now–NQTF! Whatever curve has been thrown your way–NQTF! Whatever fear, whatever challenge, whatever hurdle is in your path–NQTF!
FPWR believes that the power of parents to change PWS is limitless. Our mission–to eliminate the challenges of PWS through the advancement of research–is more than our intention. It is our calling! Whatever else life has brought to you, whatever gifts have come your way, we all know deep in our hearts that part of our purpose in this life is to change what it means to have PWS. Knowing that we are doing everything we can for our children, and for children yet to be born, should give us a sense of fulfillment unlike any other. Whatever it takes will be worth it!
So, John, you're so right. NQTF! Thank you, my friend, and Happy Birthday! You're the best!!!
By the way, in addition to the note of encouragement, John sent donations that were given to him in honor of his recent birthday. Catt gave him a surprise party and requested that donations be made to FPWR in lieu of gifts. What loving friends and family you all have!