Lissy Update

by Jake on July 15, 2011

What is the point of having a blog, if you don’t update it. And oftentimes the more often it gets updated, the more interesting it is. This probably won’t be the case on “The Barlow Family Blog”.

Lissy is about a week away from 9 months old. Just to keep you up to speed that is about 8 months longer than we expected to have with her. She hasn’t changed much in those nine months. She is a bit bigger, not much though, and all of it is length. She is still skinny. Actually she is skin and bone. We can’t get her to gain weight. We feed her as much as her little body will handle. She is still on a tube but her digestive system doesn’t work very well. It is enough to keep her alive but not enough to help her grow.

She is mostly fussy when she’s awake. We consider it a lucky day when she sleeps through most of it, because when she’s sleeping at least it doesn’t seem like she’s hurting or emotionally traumatized. Sleep is rare too. Mostly she takes short naps between fussiness until exhaustion overtakes her and she finally drops off into a deep sleep that can last for most of a day.

Heather and I sleep in shifts. I sleep for 6 hours starting early in the evening, and then I relieve my Princess sometime in the early morning, usually around 2:00. She then sleeps until she can’t anymore and do our best to tag team the kids while we are both awake.

The amount of work I get done I largely a function of how cooperative Lissy is with me. If she is calm or sleeping during “my shift” I can get work done, and if she is fussy I have to give her all of my attention.

We get a lot of help from family, friends and the ward. When we told everybody about her condition, we said “She won’t be with us very long”. I often wonder if the folks that we told that to are feeling snookered. She has obviously been with us a lot longer than “not very long”. It is important that everybody know a couple of things.

Firstly, we are so grateful for all of the help that we have been given. The gifts have been so numerous and varied that we can’t even begin to mention them nor to give personal gratitude to each of you. We are so thankful.

Secondly, it is important that everybody understand that there has never a week passed that we didn’t live in fear that it would be Lissy’s last. She has shown a strong spirit, a healthy stubbornness (a family trait), and a willingness to live that has resulted in a longevity that we didn’t expect (but we are thankful for), but along with all of that there has been a vulnerability in her that never allowed us to hope for more than a few days. Frequently she has days that are so hard on her that we fully expect her to succumb. I only mention this so ya’ll understand that while you may feel like this has gone on way longer that YOU were led to believe, it has gone on longer that WE were led to believe too. Even though we offered inaccurate information about her longevity, we did it in good faith believing wholeheartedly that her time was short. I reckon that one day looking back it will seem pretty darn short.


It goes without saying, but Laura and I think about you guys all the time. We’re planning on coming down to see you guys next week – seems like I haven’t seen you in years, Jake. Miss ya, big fella.

Furthermore, specific blog comment: I’m sure you do get that “snookered” vibe from people. The day after Alyssa was blessed, I came back to work late and explained to everybody the scenario in the terms in which we understood it at the time – that she wouldn’t be with us for too long. Well, as you said, that lil’ fighter has proved that wrong!

A few days ago, our office controller (who’s a good friend, somebody I’m happy to share family stuff with) asked me out of the blue “Hey, how’s your niece doing?” I share this to let you know that people you don’t even know – and never will – are thinking about her, too. Since they still are viewing it through the lens that I presented in October, they see it as a mind boggling miracle that she’s still around.

And it is.

by Adam Bramwell on July 15, 2011 at 9:40 am. Reply #

Thanks Adam.

by Jake on July 15, 2011 at 10:03 am. Reply #

Thanks for writing that. It was really touching and you guys are in my thoughts and prayers.

by Megan Hess on July 15, 2011 at 12:02 pm. Reply #

Hey Cuz,
Scott and I think about you and Heather often and marvel at your faith and fortitude. We love you and pray for you! May the Lord continue to bless you both with the physical and emotional strength you need on a daily basis. I’ve wished many times that we lived closer and could be of some real help. All our love to the whole family!

by Angie Bleazard on August 21, 2011 at 9:47 pm. Reply #

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