Sunday, September 11, 2016

Enjoying the extended baby phase

Lately when I pick up Lucas I am struck by how solid and long he feels. He's not particularly tall, in fact he's rather short, but to me it feels like he is all legs. He now speaks in sentences, is pretty much potty trained and tells me "no kisses!" as he wipes them away. And even though he is my baby, he is no longer a baby. At nearly 2.5, he has grown into a little boy who desires independence, and while he still needs his mommy, he likes to remind me that he can do it on his own.

Then there is my sweet Asher. Asher who doesn't yet have many words and still has that new toddler walk to him. Who loves to wave "hi" and "bye" at everyone he sees and can light up an entire room with one of those single words. He loves to kiss everything and everyone right now, making everyone he meets feel like the most important person in the world. And petit, not yet 30 inches tall, he walks up to me saying "ma, ma, ma" and stretching those little arms up at me to pick up him. When I pick him up, his still soft body melts into mine and I get to bask in the extended baby phase just a little longer.

While I don't rejoice in his delays, knowing that everything comes just that much harder for him, I know that I am allowed to enjoy this little extra gift that comes with that extra 21st chromosome because it won't be long when he will be telling me "I do it", or "I walking". When his little body will start to feel a little longer and more solid and he will wipe away my kisses. Today I get to enjoy having my baby be more of a baby a little bit longer.

Sunday, September 4, 2016

The Gift of Time

The weekend before Elias was admitted to the hospital, we began talking about him going on disability or at least cutting back to half time work. The humidity was heavy and it was getting harder for him to breath. I called the Cystic Fibrosis disability attorney to talk about the process so that we could be prepared if we chose that route based on his Dr's appointment the following week. Money was a concern since Elias was our main source of income and received no time off, so he really wanted to work at least 20 hours a week (preferably 30). I wasn't convinced and said 20 should be his max, but disability might be a better option.

However, we never made it to that appointment. On Thursday Elias was admitted to the hospital in Syracuse and we both knew in that moment that he really needed to go on disability. It's humbling to live in a culture where men are expected to provide for their families while not being able to work. Even though women work outside of the home more and more, if one parent stays home, it's usually the mother. Disability has been hard to accept, but I reminded Elias that we have been given a gift. The gift of time. Not everyone gets the gift of time, but we do.

One of the beautiful things that has come out of Elias being home the past two weeks is his relationship with Lucas is changing and growing. Lucas has always been all about mommy. Over the past two weeks, I've been working on growing my business so I'm home a little less and Elias is home all the time. He's now starting to ask daddy to play with him when before it was all about "mommy play". It's been really sweet to see.

A couple of weeks ago I shared a blog post about some of the things I was thankful that Elias and I were able to do before his health declined this year like our year in Gambia, going to the Grand Canyon, even the years we struggled with infertility and had time for just us.

Today I'm thankful for simpler things.

Earlier this summer we went to Water Safari. Our tickets were paid for by The Northern Regional Center for Independent Living and there wasn't a rain date. The weather wasn't looking promising, but we got up in the morning and went. We were blessed with a dry morning with comfortable temperatures, just long enough to fit in most of the rides we wanted to try before lunch and nap time. As we finished our lunch, the rain came, but we were already planning on heading home so that the boys could sleep in the van on the way home. We had gone into this day saying that if the weather didn't work out we could always go later in the summer. Lately I've been seeing a lot of pictures of people who have been going to Water Safari before the summer ends and I have been aware that Elias could not currently go and participate. His health wasn't great then, but he was stronger than he is right now.

Today we went to the zoo. It was hard for him and we knew going in we might not be able to see the whole thing. He pushed through, wearing his oxygen, and even though he was quite tired by the end, he was glad he went. I am so thankful for all of the memories we have made and continue to be able to make. Life has taken on a new normal for us and what we can and can't do will likely fluctuate throughout the coming years, but we will choose to continue to make memories however we can with our gift of time.