Last weekend was really good! I have a cold so on Saturday I gave into it and it was such a relief to just rest all day. I really needed it. I felt much better on Sunday, which is good because Sunday was busy. Started the day by taking my daughter, Lacey and my granddaughter, Penelope, to the Children's Museum. We were treated by fate that day and discovered that Target sponsors free 3rd Sundays at the Children's Museum, plus our parking was free at the Macy's ramp on Sundays! What a nice surprise treat!
I enjoyed my time with them, like I always do. Penelope was in top form. Smiling and flirty and entertaining. There was so much to do at the Museum that she hardly knew were to begin! She especially likes wheels where she can pretend to drive. Driving is Penelope's thing! We wore her out and then went to grab some lunch. Had a nice chat over lunch.
Lacey & I have been talking about her blog lately. She has been savoring her free time since the semester wrapped up but has also been feeling a bit uncomfortable about the rather hero worshipping type responses she gets to her entries. She keeps hearing how "they could never do what she does".
A little background on this...my granddaughter Penelope is a special needs child. She has Weaver Syndrome. Go to http://en.wikipedia.org/wiki/Weaver_syndrome if you want more info as the issues are varied and it's difficult to sum up in a quick way. It's very rare and her doctors are excited to have her - she is a rare opportunity for them!
She is doing very well and Lacey & Chris (Pen's daddy) are getting a lot of support from the medical/educational community. Lacey started the blog to help people learn about the condition, hoping to make it less scary for the next couple who has a child diagnosed with the syndrome. Lacey & Chris had a tough time with it for a while until they finally dug in, dusted off and got on with life. There are phases you go through when you find out that your life with your child isn't going to be what you expected. It's like grieving a death. The death of a dream. But then you embrace the reality and they've found out that's pretty wonderful too!
They struggled to find out what they were in for. There isn't a lot of information available out there yet. Weaver babies are rare. There is a blog on yahoo and that was helpful but it can be a lonely diagnosis since no one seems to have ever heard of it. For example, with Downs Syndrome, people recognize that and have some understanding of the syndrome. They have some idea what to expect. Weaver has a fairly distinct look also, but no one would know it in the general public because it's so rare. They just see that she's somehow "different". They don't understand how or why.
Penelope is now part of medical history as her genes are being included in a study of Weaver that's going on in Canada. Lacey's blog is another way to try to help spread information, from the view of a person who is living with it. Hoping to make it less scary for others!
Lacey is a good writer. She writes like she's having a conversation with you, which makes it very readable. She has developed a fan base. She is uncomfortable with the level of admiration she receives though. On the one hand, she deserves it, because there is a lot of work and dedication involved in raising a special needs child. She and Chris have proven to be a great team and Penelope is a very lucky little girl to have such loving, supportive parents.
The "I could never do what you're doing" comment that Lacey gets so often is sad if it's true. I'd hope that anyone who became a parent of a SN child would step up and do what their child needs them to do! I mean, what are you going to do? Trade your baby in for a "normal" child? Ignore the child's needs? Really?? It is a rather silly thing to say when you think about it. When you're a parent, you do what needs to be done for your kids. It could happen to anyone. It did. It happened to Lacey & Chris. They became parents of a SN child. And they have a very happy family!
I think she feels like the blog is becoming self serving or something because she didn't write it to gain all this admiration. But I (see, I'm gonna take a bit of credit here) pointed out that this admiration/fan base gives her a platform. She can make a difference! By continuing to tell her story, she helps people understand more about what the parents of a SN child go through. And most importantly, she shares more about life with a Weaver child. There have been many trials but she writes about the tough stuff as well as the good. There is more good than bad luckily! Not all parents of SN children are that lucky. Some have a much tougher time and also need every one's understanding and support!
Little Miss Penelope has touched so many lives and made us all better for knowing her! And maybe her Mommy, by writing a blog about life with her, will make life better for some other little kids and their parents because of her. Maybe others will understand a bit better or be kinder or just not feel as alone because of it.
