The Talk

We had a big moment with the big kids over Easter week-end. Believe it or not, we'd never really talked to them about Taylor's condition. Of course, they've asked questions from time to time - although not nearly as frequently as you might think. Taylor's therapy schedule and "walking coach" Susan have been such a part of our life for nearly two years that the big kids usually don't seem too phased by it. We'd answered any questions so far - "why does Taylor have a walking coach?" very simply - just like Lauren has a reading coach and Jacob has a soccer coach, Taylor has a walking coach to help her walk. They've noticed that younger kids are more capable and bigger, but we've talked about how everyone learns and grows at their own pace. The innocence of children is remarkable.

We neglected to tell them because at first, we were so overwhelmed and didn't know how to answer questions. Then, our new routine became somewhat normal and they didn't ask questions. We've wanted to protect their innocence and let them be kids without the "heaviness" of the situation. But, enough time has passed and Taylor has enough noticeable delays that we've known for months that we needed to have "the talk". We kept making excuses - let's get past the holidays, then past Hawaii, and then a million other excuses, but we decided Easter week-end that we really couldn't wait any longer for a number of reasons.

So, we found an opening Saturday morning - Jacob asked an innocent question about Taylor's hands ("why do they go like this?" - making a pincer grasp), and I dove in. I explained to them that Taylor's brain is different and that this makes things harder for her. We had a great book from the NODCC called "ACC and Me" - a kids book that describes the condition really simply. I read them the book and answered their questions. We didn't want to make it a big "moment", so the spontaniety of it worked for us. Interestingly, Lauren's big question was "why didn't you tell me earlier?" We explained that we didn't know when Taylor was born and we were still trying to understand ACC. They were very curious if they knew anyone else with ACC and Jacob even said he wanted to have "the ACC". We answered a few more questions, then Jacob said "let's play legos" and we were done.

We had thought so much about this conversation and so badly wanted to do it well - explaining it factually, without freaking them out, making it unnecessarily heavy, or a huge life moment they would always remember. We want them to maintain as much innocence as possible, and for life to be as carefree as possible.

They told their cousins at an Easter gathering that night, so I gave the same speech to Rory, Griffin and Graham. Rory, in particular, is old enough to understand what is going on at the ripe old age of 9. They are all so sweet with Taylor. The double conversation was emotionally draining for me - you really don't want to have to tell your dear, sweet kids that their sister has a different brain. These are the moments you can't predict or plan for in life. But I hope that we approached it with sensitivity, grace and a spirit of positivity - these are the gifts I want to give them forever. And to understand that they all are special - in their own unique and wonderful way.

Belated Easter Update

Taylor said "mama" tonight. She was in her highchair and I was cleaning up her dinner and I walked back to her chair - she looked right at me and said "mama". This was music to my ears. You may remember that mama was her first word and shortly after her seizure, she lost almost all of her words. She has a very consistent "dada", but this was the first time I heard a clear "mama" in almost a year. It's hard to describe how much my heart melted. I know she loves me by the way she looks at me, smiles, cuddles, and lights up for me. But it is so nice to hear my sweet little gal say "mama". I will treasure that forever. I hope to hear it much more.

It's a fitting ending for our last several days. Lauren was on spring break last week so we went to Whidbey Island on Thursday and just relaxed. It is nice because we have to slow down there - no therapy, no running around, no household chores - just playing, being outside and relaxing together. The kids had a great time and David and I really needed the break. We've had a tough few weeks and needed a moment to recharge.

We went through a lull where it's hard to say exactly why the past few weeks were tough. We had a round of doctor appoitments - as we do every few months - this time hitting her pediatrician, neurologist, and endocrinologist. This involves appointments at Children's and while not as stressful as it used to be, it still hits you on the head that you are visiting specialists no parent ever wants to see. Her pediatrician appointment was uneventful and quick - he was quite late and rushed - and annoying - but quickly confirmed what I was worried about - she has fallen off the growth chart and he was concerned about her growth. She is still proportional - height/weight - just very small. He agreed we should go back to endocrinology to test for growth hormone or other hormonal deficiencies that might impact her growth. David was a trooper and took her to that appointment - which I hate because it involves giving lots of blood and in the past, this has been really hard for Taylor. As expected, we learned nothing except Taylor gave lots of blood - we're still awaiting the test results. We swore we'd always make sure to do the blood work before we saw the specilist so we could actually have a productive conversation, but they got us in on a cancelled appointment - otherwise we would have to wait until July! The specialist doctor shortage is the real deal. So, we're waiting to learn more, but they actually think her growth issues may be associated with her diet - or lack thereof. Particularly worrisome is a protein shortage. She truly hates turkey/chicken baby food, but we're going to have to get creative. While also tackling feeding therapy more aggressively. Ahhhh......on the plus side, the neurology appointment was positive - amazing from our old curmudgeon of a doctor. He was really pleased with Taylor's progress and said he thought she would be able to walk!!! - given her progress. This was so wonderful - no doctor ever tells us anything hopeful so to hear definitive guidance was such a gift. We needed a bright light so badly, and combined with my "mama", life is sweet.

We needed this reminder because Easter was kind of hard for us. Again, it's hard to say why. It followed this series of doctor appointments, and Jacob and Lauren had staggered spring breaks which created two weeks of schedule juggling. Also, Susan was coming to our house early for therapy sessions, so it was lots of therapy for all of us. The combination of this had me heading into Easter in a bit of a funk - but mostly, it really hit home that I want Taylor to be able to hunt Easter eggs like the other kids. She is 2.5 now and it is so hard to know what she is missing out on and what we so desperately want for her. Of course, with the big kids, we want to embrace all of the fun and festivities - but I have to mentally prepare myself to not be sad for Taylor - or at least try to. My old mantra "it's not helpful" to be sad or worried came in somewhat handy, but it was a bit of a long week. At church, we prayed for peace and I prayed extra hard - I felt like I needed an extra dose this year.

So, after a few tough weeks, this week-end was even more blissful and made Taylor's special "mama" gift even more special. Our life is truly good and we are blessed.