A special contribution by guest blogger Natalie Neto
Natalie shared her story via our Stories of Hope questionnaire.
How has your child exceeded your expectations?
In every way. When I received his diagnosis, I felt utter despair and I am ashamed to say a part of me rejected my baby, even though I loved him and wanted to protect him. I felt let down and devastated at all that I had lost. My expectations were low, as to what he could achieve and what he would bring to my life, compared to my elder non–PWS child.
He has enriched my life in every way. He is HAPPY and he makes me HAPPY and I wish I could have known the joy that I would feel at parenting him and know that it really isn't that different to how I feel about my other child. I am so proud of all that he has achieved already and he's not even 3!
How have you surprised yourself?
I recall during the early nights when my son was discharged from NICU. He was still on a NG tube, and I was pumping breast milk and feeding him every three hours. I was exhausted and emotionally spent. I was numb from crying and I felt that I could not go on. Yet I did. And I still do, daily. Now I realise that every moment shall pass and even though it is very hard at times, I will do it. Having a child with PWS has made me realise that I can surpass many struggles.
What are you thankful for?
Other parents, my son's wonderful doctors, my family and for having the privilege of being a mother to an incredible son :)
What does this quote mean to you?
“Until you have a kid with special needs, you have no idea of the depth of your strength, tenacity and resourcefulness.”
That is true. I would also add the depth of your ability to give and receive unconditional love.
How about this one?
“Most people see what is, and never see what can be.”
I agree. I always say that my son may have PWS but it is not who he is and it does not define or limit him in any way. I expect very great things of him.
What gives you hope for the future?
That so many parents and organisations and doctors are dedicated to finding treatments to help our children. That our generation of kids are benefiting from the efforts of those who have gone before. Our kids are reaping the rewards of growth hormone, diet and nutrition advice and early intervention.
What positive life lessons have you learned from having a child with PWS?
That other people's opinions and perceptions should not dictate my own happiness. That it's okay to walk on a different path. That what matters most of all is love and happiness. That people with disabilities are a lot more the same than they are different.
What would you say to a parent whose child has recently been diagnosed with PWS?
I would say don't underestimate your child EVER. Don't focus on what they are not and what they cannot do, but what he or she is and how you can help them do everything. Our children are so determined. And they will bring you great, great joy - I promise. Honestly, some days I forget about PWS and just get lost in enjoying my son. I never thought I would feel that way.
Who has helped you in your PWS journey?
Reaching out to the on-line community, becoming a part of FPWR and PWSA-USA, Facebook support groups, and more recently, attending conferences and meeting so many inspirational people face to face, including those with PWS.
Do you have a story of hope to share with others about your experiences with PWS? Send it to us!