Friday, March 9, 2012

Keeping In Touch

I think everyone struggles to stay in touch with people as we grow older. It is especially difficult when you live far away from someone. Gavin and I have struggled with how to stay in touch with people who are important to us while still making time for our own family. We have such little time with Zoe that is not spent feeding, medicating, going to appointments, bathing, dressing etc. Now that Ailsa is here, it is even more difficult to find any extra time. When Zoe is well, we want to spend every spare minute playing and doing fun things with her. When Zoe is not well, all of our time and energy is taken up with caring for her. Gavin's grandmother passed away last year and we regretted that we were not able to write her as often as we wished we had. So we have made a resolution to make time to stay in touch with people. We have been better at updating this blog and keeping people informed about what is going on in our lives. But we know this blog does not replace a handwritten letter, email, or a phone call.

Remembering Joan

We just found out that a woman we used to work with in Philadelphia died this past week. Both of us remember Joan as a very sweet and dedicated teacher. She would get excited and share in your joy. She always had something encouraging to say. And even when Joan was frustrated with a person or a situation, she still would comment on the positive. Sadly, we lost touch with Joan in the last few years. When we first moved to Toronto, I kept in touch with email. We also visited with Joan when we went to Philly for my brother's wedding when Zoe was a baby. We even talked about visiting with her this past December but recognized that it was the holidays and we weren't in town for very long. As it turned out, we would not have been able to visit with her anyway due to Zoe breaking her arm. But still, I do regret that we did not keep in contact.

Joan gave us a tree ornament that says "Our 1st Christmas" after Gavin and I announced to our colleagues that we had snuck off to the Caribbean and eloped. We still hang this ornament on our tree every year and talk about how sweet it was that Joan had gotten us that. Such little gifts that meant so much.

That is how I remember Joan- always sending out a Happy Birthday email or getting a little something to let you know she was thinking of you. Joan had taken care of our fish while we were away on that Caribbean trip and we brought back a little hand-blown glass fish for her as a thank you. I hope she kept that fish and it made her happy to think of us.

Joan gave Zoe a pair of very cute pajamas that now fit Ailsa. We put them on Ailsa last night and thought of Joan. We are thinking about her family (Joan was always bragging about her children) and feel thankful that we got to know Joan. We can only imagine the pain her family is in now. We know Joan will be very missed.

Zoe at 13 months. Joan got to see this picture because I sent it to her in a thank you email.

Ailsa this morning at almost 10 months.

Saturday, March 3, 2012

Two Against One

The Shoe Thief

Ailsa has a habit of chewing on the bottom of people's shoes. She especially loves to chew on Zoe's shoes- yum! Obviously, we are discouraging this habit but it doesn't help when Zoe is encouraging her by giving her shoes!

The other day both girls were playing on the mats. I took off Zoe's shoes and Ailsa quickly grabbed one and started going to town on it. Much to her dismay, I took the shoe away and placed both shoes well out of either girls' reach. As I did this, I said something like, "Zoe has been walking around school all day, her shoes are dirty. Shoes are not for eating." I left the room to get something and when I returned, I could hear Zoe giggling- always a sign she is up to no good!

As I peeked into the living room, I saw two things going on simultaneously:

1. Ailsa was loudly vocalizing at Zoe while reaching one hand toward the desired shoe. After years of having a non-verbal child, we have learned to interpret body language and vocalizations. But I think this would have been pretty obvious to anyone watching. If Ailsa could speak, she would be saying, "Sister, grab me that shoe!"

2. Zoe was deliberately rolling back in forth to reposition herself next to the shoes. All the while she was giggling her head off. I interpreted this to mean, "Don't worry sister- I'm on it!"

Zoe finally positioned her self close enough to the shoes. She grabbed the shoe and handed it to the very excited Ailsa who immediately began chewing on it. All of this was quite hilarious to Zoe who then did a double roll away from Ailsa and the shoes and began innocently playing with a toy. When I entered the room and said, "How did you get that shoe?" Zoe looked at me with a very serious face and said nothing.

Hmmm, perhaps we shouldn't be encouraging the girls to communicate so well!

This picture is kind of dark but you can see how Zoe rolled away from "the scene of the crime."

Thursday, March 1, 2012

What is Normal?

With Zoe needing to be in the hospital from time to time, Gavin and I try to minimize the stress of being in hospital on Zoe and Ailsa. Both Gavin and I do this in our work so it comes a little more naturally for us. We wish that being critically ill was not part of who Zoe is, but as time has gone on we have accepted that this is indeed a part of her life and therefore, part of our family's life. Photo albums have pictures of Zoe with tubes, Zoe hooked up to a breathing machine, Zoe in equipment, etc. This has become our normal in a way that we did not expect. For all of Zoe's life we knew we had a child with special needs. We saw the impact on her development. We saw our house fill with equipment. We cheered as Zoe reached any new step in development, no matter how small. Accepting that Zoe is critically ill at times was harder for us to accept as our "normal." We love Zoe and can not imagine life without her. And hopefully we will never know what that is like. So for now, we celebrate our life as it is. We celebrate our normal.

Zoe having fun with the music therapist. We seek out people like this to help Zoe have fun and make good memories in the hospital.

Having a silly sister clinging to your arm definitely helps to lift Zoe's spirits. Can you imagine these two on a rollar coaster? What are they looking at? Daddy was trying to make them smile for the picture.

Daddy succeeded in making one of the girls smile!

Thank you to all of our friends and family who are there to celebrate the steps along the way. Zoe really is an amazing little girl and it is a joy to watch her grow.