To Be Loved & Accepted

This past week, I went to my first Mommy & Me class with Peyton.  I had started Mommy & Me with Chad when he was 6 weeks old.  It was an experience that I really enjoyed.  It was my time together with Chad, meeting other moms and babies, talking about all of the struggles, experiences, and joys of being a new mom.  It was such an amazing support system and we met the most magnificent people that have become some of our closest friends.

I wasn’t sure I was going to participate in a Mommy & Me class with Peyton.  I had thought about it a few months ago, and I knew, emotionally, I wasn’t there yet.  Recently, as Peyton has improved and progressed, and as we are feeling more comfortable with our new schedule, I have felt like this was the right time.    During our first class, I was unexpectedly overwhelmed.  I must say there was a moment when I thought it would be best that I excuse myself, fight or flight.  When it was time to introduce myself and Peyton, I was flooded with emotion.  Having to discuss Peyton and her diagnosis was all too much for me.  This was the first time I had been in a room full of moms and babies the same age as Peyton, and sometimes when I verbalize the words “Peyton has Prader-Willi Syndrome”, it just hits me that wow, Peyton has Prader-Willi Syndrome.  As I was sitting in the room, I felt for the first time a feeling of judgement.  This was not coming from the others in the room, it was more of an internal feeling, it was a fear of Peyton being judged.  I do not want Peyton to be judged, now or ever.  I don’t want her to feel different.  I do not want people to define her by her diagnosis because she is so much more.

This brought me back to an article I had read recently in my newsletter from the Prader-Will California Foundation.  A question was asked, “Does anyone’s child or adult child with PWS experience bullying and if so, how do you help your child/adult child respond to it?”  The father that responded told a beautiful story about attending the special olympics with some friends.  He noted that while the athletes were playing, he saw in the short distance three teenage boys making fun of the kids.  He walked over to them and although he was angry and frustrated, he decided to take a different approach.  The father smiled at them and told them how fortunate they were to be born in good health.  He went on to say that these kids are the kindest people they will ever meet and that it is not their fault that they have a disability, and really, all they want is what you want – to be accepted, loved and respected.  The boys were taken aback, one even had tears in his eyes and  before he knew it, the boys were playing with the kids from the Special Olympics.

No matter what your situation is, if you have a disability or not, we truly desire the freedom of being loved and accepted for who we are.  As we get older, I think we care less about that, but we still care.  Brian Tracy wrote it perfectly, “the greatest gift that you can give to others is the gift of unconditional love and acceptance.”  Isn’t that so true?  Isn’t that the greatest gift that we can give to others and such an important gift that we can teach our children?  To be loved and accepted.  To love and to accept.

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Thankful

Thank you to all of you. Thank you for all of your support, and for your words of encouragement. We feel so fortunate that we have surrounded ourselves with such magnificent friends and such amazing family. I was scared to open up and to share some of our closest, deepest emotions. Thank you to all of you for making me so thankful about my decision.

When we were told about Peyton’s diagnosis, it was devastating. That night, our world changed. There is no doubt that this has been the most difficult thing I have had to deal with in my adult life. After the doctor’s discussed Peyton’s condition and gave us some details about Prader-Willi Syndrome, Brent so gracefully thanked them and let them know that we needed some time together to digest this information. After they left the room, we cried, we held each other, we held Peyton, and Brent looked at me, and he said, “We will love her so much”. Those were the first words Brent said to me. At a time when our future had changed forever, our expectations were unknown, and we were flooded with emotion, those were his first words. So, when you say these amazing things, when you write such beautiful messages, please know that I wouldn’t be here, in this place, if it weren’t for my amazing husband.  I am so thankful for Brent, for his courage, his strength, and his unconditional love.

When I think about going through this journey, I cannot imagine doing this with anyone else. I always knew I married the most amazing man, the perfect man for me, and when he handled Peyton’s diagnosis with such grace and such positivity, in that moment, with all of the emotions, through all of the devastation and sadness, I fell in love all over again. I knew, right then, that we were capable of doing this, we were going to be able to make Peyton’s life amazing. What I did not know, what I had not realized, was that she was going to give us more than we could ever give her. She was going to change our life forever. For this, Peyton, we are so appreciative and thankful for you.

I am thankful for so many things, for our family and our friends and the amazing support that we have received, for our beautiful children, Chad and Peyton, for my amazing husband. Thank you to all of you for supporting us and pushing us on this journey. We are so thankful for all of you.

Perfect, Just the Way You Are

The other night, I was reading with Chad, our 23 month old little boy, before bed.  We were reading Corduroy.  I am sure many of you have read it when you were little or maybe you have read it to your children.  For me, it had been a long time since I had read that story.

To summarize, Corduroy is a little bear that lived in the toy department of a big department store.  This little girl, Lisa, spots Corduroy and says to her mom, “Look!  There’s the very bear I’ve always wanted.”  The little girls mom responds by saying “I’ve spent too much already.  Besides, he doesn’t look new.  He’s lost the button to one of his shoulder straps.”  As the Mother walks Lisa out of the department store, you can see that they are both so sad to part.  Corduroy had not realized that he was missing a button, and so that night he goes looking throughout the department store, in search of his lost button. While on his search, he is found by security and placed back in the toy department.  The very next day, the little girl was one of the very first customers to come in.  She grabs Corduroy and says, “I’m Lisa, and you’re going to be my very own bear.  Last night I counted what I’ve saved in my piggy bank and my mother said I could bring you home.”  When they got home, Corduroy looked around and saw that right next to Lisa’s bed was the perfect little bed, just for him.  Corduroy says to Lisa, “This must be home, I’ve always wanted a home!”  Lisa sat down with Corduroy on her lap and began to sew a button on his overalls.  She said to him “I like you the way you are, but you’ll be more comfortable with your shoulder strap fastened.”  “You must be a friend,” says Corduroy, “I’ve always wanted a friend.”  “Me too!” says Lisa as she gives him a big hug.

I finished putting Chad to bed and went into the living room.  I grabbed Peyton and held her tight.  I couldn’t help but start crying.  I felt so much the way Lisa did about Corduroy.  We will do everything that we can to help Peyton to become the best that she can possibly be.  With her therapies, all of her doctors appointments, her growth hormone shots….we will sew on her missing button.

In life, it is easy to get carried away with perfection, when really, perfect doesn’t have to be perfect at all.  To us, Peyton, you will always be perfect just the way you are.