We are having a sweltering heat wave here in Oakland, CA. It was 90 at our house today and like most old homes in the area, ours doesn't have AC. So, we headed to the beach in search of some cooler air.
Last summer when we took the twins to the beach it was a nightmare. Granted, they were only about 7 months old (couldn't sit unsupported yet), it was foggy and windy, and they cried on the blanket the whole time. Good times.
But now, at 18 months, it's a whole new beachy keen world. Lucy was heavily into digging and would proudly and dramatically dump her bucket of sand when it got full. Drake was crawling around on the hard sand near the water and would have crawled right into the ocean if I had let him. He loved getting splashed by the little waves and each time I would try to re-direct him to crawl towards dry land, he would turn around and head into the water again.
It was a great day. It was also kind of a trial run on "do they like the beach?" as we are going to the the Jersey shore for a week in August with my parents. Now, I know they are going to absolutely love it.
Drake's speech therapist called to tell me she thinks we should have Lucy evaluated for speech therapy, too. Since Lucy is always around when she's working with Drake, I guess it's fair to say she knows where Lucy is / should be with language development. I guess I realize Lucy doesn't have many words, but I haven't been concerned. Her receptive language is amazing. You can pretty much ask her to go get / pick up / bring any number of things to you. She can point to identify lights, eyes, noses, apples. And she babbles all day long, complete with inflection and pauses.
But it's true she doesn't say much. She mostly just points at things she wants and says something that sounds like "gaack". Her only really clear words are "hi" and "bye" and "eye". She doesn't repeat words when prompted. The other weird thing is she doesn't identify people. If you ask her where is mama or dada or auntie, she doesn't point or go to or look to the correct person.
I am all for therapy, but I feel so over-scheduled as is, I don't know where to fit yet another appointment in! Argh, thought we had avoided therapy for Lucy.
It's been about 6 months since I started this blog. Before I got pregnant with the twins, I never really read blogs. It's kind of strange since I work in technology for an online social media company. I guess it's fair to say I read Pink Is The New Blog for my celebrity goss. But that was about it. Now I have a whole slew of blogs I read daily, most of them about parenting, parenting twins, and parenting twins with a disability.
I remember finding the first of the blogs I still read now early in my pregnancy when I had first trimester bleeding and was diagnosed with a subchorionic hematoma (SCH). I googled SCH and found Goddess in Progress, Everyday Stranger, and Urban Artifact (who has since moved her site). They were all moms pregnant with twins around the same gestation as mine and I remember being so excited to read their posts and see that I was not alone with my SHC and that everyone was doing fine. We all ended up having boy/girl twins and I still read their blogs today.
Then when Drake was given his PVL diagnosis and the CP term was dropped for the first time, I called my best friend and cried to her about Drake and the long unknown ahead. She did some googling and emailed me a link to Cerebral Palsy Baby. It was right when Darcie was starting to crawl at like 18 months or two years or something and she looked so good and "normal". I remember my friend saying and me thinking, "Okay, this may not be so bad if this is what CP looks like".
Then I googled PVL and found all kinds of horrific things, but also Waiting for the Miracle. I got to know Alice and her amazing mom. Alice has more involvement than Darcie, so that was another example of the disability I put into my "what you could expect" mental bucket.
I remember getting the courage to comment on Alice's mom's blog. It was my first comment on a blog. She wrote me back and I read the email on my phone at a movie theater (I have a really good memory, I could probably tell you what I was wearing, but I'll refrain). I remember reading her reply and bursting in tears. She nailed exactly what I had been thinking and felt. How she started the blog because she felt so alone and searches for PVL only returned medical lawsuits and horror stories. She had so much more personal positivity to bring and progress and love. I still read her blog and wait for her posts. She has written some amazing entries that I feel I could have written myself.
I also really like reading the Galli-ringo Family, though she doesn't post much. Her girls are older than my twins, and her daughter Hannah seems like she is doing great and gives me hope for the future. She wrote an amazing post about taking her girls skiing, which left me in tears. We are so hopeful to have Drake ski or be able to get down a slope somehow as my husband and I grew up skiing, too. Plus, I think she lives in Vermont, which is where I was born and raised.
I feel like I know these people, though I've never met them. And I can't imagine my life without them and their families and their stories. Thanks for being there.
My last thought of the night is: I don't really know who reads this blog. I have Google Analytics tracking on it, so I know some people find it. I hope they are parents and parents of a young baby who unfortunately has been recently diagnosed with PVL or CP and that they find some hope, courage and encouragement here. And that they meet these people I mentioned above, who have been so inspiring, open and supportive.
I am the mom to 4 year old boy/girl twins, Drake and Lucy, and a 1 year old boy, Everett. Our twins were born at 30 weeks and spent 2 months in the NICU. Our son, Drake, was diagnosed with PVL (Periventricular Leukomalacia) at 8 weeks old and Spastic Diplegia CP at age 3.