This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

Good morning!

Every once in a while I get too busy to write too much. Thus, I ask myself: “What’s the point and why am I doing this and should I continue or give it up?”

'Cause srsly, I'm tired.

‘Cause srsly, I’m tired.

Our days are so busy and my time is stretched between a family life, a career, running, trying to get our money life straight and attempting to raise a little money for Eli’s disease. Having a chronic disease in the family has its own set of demands, and CF demands a lot of families’ time. Each area is full of deadlines and responsibilities of all different sorts.

At the end of the day, Mark and I are a coupla zombies. We’ve got nothin’ left. Nothin’. We turn on “Hell on Wheels” on Netflix before passing out of exhaustion. We wage a losing war on laundry. I don’t have time to do things like…read a book. I did, however, manage to sign up for a 30-day simple green smoothie challenge. ‘Cause, yaaaaay, smoothies!!!!!!!!

So that’s how it goes, and we go to sleep, get up and do it all over again. However, we do have fun and have been making a bigger effort along the lines of not being so lonesome. It’s easy to be lonesome when you’re still a relative newcomer to an area and an outsider to a different region of the country from where you grew up. It’s also easy to be lonesome when you’re me, because I just lean that way, and a part of me loves and craves lonely, empty time to fill with a lot of nothing (and yet I never seem to have any of that, which is another reason I run, by myself, and then come home and lock my family out of the bathroom while I run up the water bill and contribute to drought conditions taking 20-plus minute showers. Srsly I love ya’ll but for the love of God can you please just leave me alone for 20 MINUTES???)

But along the lines of being social, I had a fun lunch with Laila, my friend Khina and her daughter Holland this weekend. We got hamburgers (NOMS) and had a shameless 10,000-picture photo shoot with our girls outside of the Wayne Coyne art gallery, side-stepping the weird painted vagina door.

Tot fashun photo shoot.

Tot fashun photo shoot.

Mark and I had a few of his teacher friends over for drinks and cards. A lot of drinks, a lot of cards. We stayed up ’til 1 a.m. It was a miracle.

Anyhow, I thought I’d share three recent nice notes from readers that I hope will reinvigorate me! I should mention, my family members and friends send nice notes, comments and texts, too. But, they know me, and these are perfect strangers I didn’t even bribe!

From mamabearerin

I started blogging a few months ago as an outlet myself. I am 23 weeks pregnant with my second son and just found out this pregnancy that both my husband and myself are CF carriers. We have opted to skip the amnio for the wait and see approach and are hoping for a happy outcome in June. While I am certainly hoping for the best, I’m also preparing for the worst. I came across an article about you and Eli during one of my many google searches a couple months back and then lo and behold, while doing some browsing around WordPress this evening I came across your blog. I’ve been finding a lot of strength in blogs by mother’s of cf children. I look forward to following your story. Best wishes to your family.

2. From user: Mrs Crawshaw

Thanks for writing this blog. I too have a baby who has been diagnosed with cystic fibrosis, he is now 8 months old and although I wouldn’t change him for the world it can be so hard. It’s good to hear about other peoples stories and to know that we are not alone. Eli is beautiful and he is lucky to have a mom that obviously loves him so much. Good luck to you, Eli and your family xxx

3. From: Rhonda:

For what it’s worth, I love when I see a new email come in from you. I love reading about you and the family and about your son. He is a handsome fella and you are a wonderful mother. I found your blog when I was pregnant with my daughter. I found out I was a carrier for the cf gene delta f508 and couldn’t afford to get my boyfriend tested to see if he was a carrier. My whole pregnancy I struggled with the what ifs and than found you. You gave me hope and strength that if my baby had this it would be ok. My cousins son has cf and times are changing for this disease. It is becoming more treatable as it seems.My daughter is fine but I just want you to know you gave me strength when I was very unsure and scared during my pregnancy. I’m glad you continue to write this blog, I look forward to reading it.

Well, shoot.

There are definitely times in the last few years I’ve felt low-down and busted.

So, if by writing about Eli and our family’s challenges and struggles and little victories, it helps others, then I”ll keep doing it.

I occasionally hear from another type of reader, the biology student.

That reader tends to be curious about what cystic fibrosis looks like in real life, out of books. I’m happy to try to shed light there, too. Especially if it helps those studying disease think about the whole person, not just the disease.

Along the lines of science, I am very excited this week to get to travel to Washington, D.C. for a CF Foundation Leadership Conference.

I want to blog about the advancements being made in research that will help Eli and his little buddies live a good, long life.

My hope is one day his disease will not be a deadly disease, but a manageable condition. I think we are heading that way fast, and I can’t wait to hear more.

It’s going to be nice to hang out with other parents of CFers, too. Because of the cross-infection risk, our children can’t hang around each other at all.

There’s a lot of comfort to be found in not feeling alone, and also, understanding.

Will make headway in both areas.

Oooh – the other thing I want to do this weekend: Get my 20-mile run over with. After this run is done, I will allegedly be fit enough to do the marathon. In D.C., I’m staying with my pals Will and Megan and their little darlin’ Eleanor. Megan was nice enough to plot a run for me through a beautiful DC park. The run will end at the National Mall and our nation’s icons! … I can’t wait to #shamelesselfie about it. #truestory.

Thanks for reading!

And, if you feel so inclined, do please donate to Cystic Fibrosis research that will save my Eli buddy!

Hey ya'll, we're poncho twins!

Hey ya’ll, we’re poncho twins!


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