new perspective on Children's Hospital

Today was a roller coaster day of emotions. Part of it was self-inflicted.....this morning on my way to take Taylor to therapy I heard a local radio station promoting a radio-thon for Children's Hospital, which of course, we're very familiar with. The fundraiser was well-done with sentimental songs and personal stories from families that Children's has helped. I was a mess of tears by the time I arrived at Taylor's therapy session. Some of the stories were so sad and touching and of course I had to donate money. The hospital really does amazing work - they don't turn any kids away, whether they can pay or not - or no matter how hopeless their prognosis might be. We are truly fortunate to have such a great service in our community.

I did hear one great story that totally changed my perspective. You've heard me say how hard it is for me to go to Children's because it is so sad to me. Today on the radio, I heard a lady saying how wonderful Children's is and how it always puts a smile on her face to go there because you see miracles everywhere. I thought this was brilliant and hope it forever changes my point-of-view when we go there. Rather than feeling sorry for the kids and their families (and somewhat depressed myself that we need to be there too), it's much more "helpful" to focus on the faith of the families and the miracles that are saving these kids lives, or making their lives much more comfortable. This is my new approach and the emotional radio-thon was worth it for this new perspective.

It also made me ponder why I felt sorry for the kids and their families. At the most obvious level, it's an easy answer. But when I think about our situation - I never want people to feel sorry for Taylor because she is so precious and wonderful - just the way she is. It may be easier for me to say this because she doesn't have a terminal illness and we still have great hope for her future. But, I bet almost of the families at Children's would consider their children gifts - regardless of the challenges they face. This is the beauty of parent's unconditional love. My challenge to myself - and to you if I may preach for a moment- is to view the disabled or sick community for what they can offer, rather than what they lack. I've seen the sweetest smiles and giggles from Down's Syndrome kids in Taylor's class; watched brave, bald kids fighting cancer inspire people with their positivity and will to live; and seen kids with challenges it's hard to fathom find their way to contribute and smile. Of course it's not all roses and these kids need our support - but don't we all want our first impression to be influenced by who we are, not what we can do?

Long-overdue update

I can’t believe how much time has gone by since I’ve written a thoughtful update. I was behind (in life, work, etc) from our fabulous Hawaiian vacation, then I had to take a quick trip to LA for work (which was actually really fun), and now I’ve gotten so far behind I’ve been overwhelmed regarding where to start. So, I’ll start with today and eventually catch-up and if not, at least I’m back on the blog writing wagon. I had to add a few pics from Hawaii - we really had an awesome time.

Taylor has had a busy week since we returned from Hawaii. It took her a few days to adjust from the trip and we were fortunate that she did not have school or therapy last week for winter break. We were a little concerned about a prolonged break from therapy, but she was so tired from the trip, it was nice to let her ease back into the routine. Our other big development is the addition of Alison, our new nanny, to our family. She started last Tuesday – a great day to start since we got to our house from the airport at 1am! – but she was a trooper and has quickly endeared herself to all of the kids. We are very blessed to have her join us every day – in addition to being wonderful with all of the kids, she’s working on a master’s in human development and is very interested in helping Taylor. For those of you that prayed that we would find a great new nanny – thank you! – Alison was the first person I interviewed, but a fantastic find. We miss Julie, of course, who was a rock and a gift through a very tough time, but hope we’ll stay in touch with her and show her Taylor’s new skills.

Taylor hasn’t made rapid progress in any particular area, but she continues to make “little” wins, which are very exciting for us. My favorite new Taylor skills involve her exersaucer (a toy that lets her sit or stand supported and play with toys). Now she loves to stand up on her own (she has decent balance and the seat of the exersaucer catches her when her legs get tired) and play with the toys on her exersaucer. She has mastered hitting a small teapot that plays a song and it’s quite exciting because she has to hit a fairly small button to get it to play the music. She’s also still enjoying movement – today we were at the doctor’s office and she was loving laying on the table (covered with paper) and kicking her feet really hard, which moved her around on the table. She was absolutely cracking up. She has been quite smiley and giggly lately, which is such a gift. It’s great to know that she is happy and loving her family – she continues to crack up at the kids especially hard – Jacob’s laugh can make her dissolve into giggles immediately. Lauren continues to be a good little mother to Taylor and is quick to give her a binky or a hug, or let me know if I’m not responding to a cry quickly enough.

Today we met with Taylor’s pediatrician, Dr. Spector, for her 18 month-old appointment. Oh, if only we didn’t have to see doctors my head-in-sand approach would work much better. Today was relatively straight-forward – Taylor continues to be a peanut and unfortunately, fell a few percentage points off the growth chart. The good news is that her head circumference is growing according to plan – this was a concern the last appointment because it could indicate concerns with her brain’s growth, but her head circumference is on track. This is consistent with her neurologist’s opinion. Her growth and weight are not on the chart, but they are proportional. We’re going to get an appointment with the endocrinologist on the books for the next few months to test her hormone levels again (namely the pituitary gland). All the hormones tested fine in her last test in September, so hopefully she’s still OK. Her brain condition can lend itself to hormonal deficiencies over time, so we do have to watch this, particularly since she is off the growth chart now. The other interesting marker is that she doesn’t have any teeth yet – abnormal for her age at this point. It turns out that lack of teeth can be a sign of pituitary deficiency – who knew? So, we’re not overly concerned, but will get the appointment on the books and see what happens. One of the reasons we’re not overly concerned is that we should be able to address any hormonal deficiencies with medicine. Not what we would choose, but in the grand scheme of things – we can handle it.

So, that’s probably enough for tonight. I think I’ve gotten through all of the doctory updates and will make my next post more fun. We really did have an amazing vacation – the big kids were in heaven and they’re thrilled to get back in the routine of school and friends. My overall mood these days is grateful – I’m so thankful for our family, our gifts, and our happiness. I feel incredibly blessed for every day that I get to hug my kids, watch them laugh and smile, and enjoy a day together.

Aloha - return from Maui

Aloha! Sorry it has been so long since I have written....we were on a long vacation to Maui (12 days!!) and we just returned late last night. I did try to post an entry from our condo, but the connection wouldn't let me, so we just completely relaxed and enjoyed a few weeks of bliss. No stress, no appointments, no hustle and bustle - it was such a gift and we treasured the time spent relaxing and playing as a family. Lauren and Jacob were in heaven. They played, swam and ran to their hearts content. There is such joy in watching them delight in the waves of the ocean and splash around all day. Taylor finally warmed up and decided Hawaii wasn't so bad - she had a slow start, but ultimately had a good time.

I'll send a much more detailed post soon - we got home last night at 1am and David and I had to work today - we're wiped out tonight, but wanted to post that we're happy and home safe and sound.

Attached is a picture of my little sun goddess (not really - Taylor really does not like the sun). And, her flower barrette looks a little goofy, but I just can't resist now that she has a bit of hair.