G-Tube Surgery & Being Broken

So we've known it was coming for a long time. I think I knew for several years that eventually Chloe would get a g-tube. I never really fought the idea, but I also wasn't eager about it. When she needed it, we would get it, but I felt no need to rush it.

At her check-up in May or June, I looked at her growth chart... her height was above the 100th percentile and her weight was below the 5th percentile. My heart sank... Chloe was literally starving. So we made the arrangements for the g-tube surgery for August 7th.

Chloe looked SO ADORABLE in the little hospital gown and hospital pants. Oh my goodness, my angel baby, I just adore her. She makes everything beautiful and special...

I had absolute faith in our doctors and I was in absolute peace about the whole thing. Until they asked me to come back after the surgery and I heard Chloe's desperate scream all the way down the hall. I did the rush-almost-a-jog-walk to get to her and comfort her. But it was one of those times when I couldn't comfort her. We had a near impossible time controlling her pain the entire first day. It was AWFUL and I had complete 'buyer's remorse' over the surgery. I would have taken it back if I could have on day one. BUT we survived and by day two she was already back to her happy little self. Thank goodness.

Then a life-altering event occurred.

Chloe slept. Like a rock. For 5 nights in a row.

After the 3rd night, I allowed myself to dream about what it would be like if she started sleeping, if all of us could start getting good sleep.... I allowed myself to see life completely differently. This might seem so dramatic, but not getting good sleep for over 5 years is absolutely the biggest challenge I have ever been asked to face. It is hard on me, hard on Oby, hard on our marriage, and affects every single thing we do (or try but fail to do). So there I was, picturing life being 'normal' for a few days.

Then it the dream shattered. She went back to sleeping poorly and only sleeping 2 nights a week.

And it broke me. I mean, it broke me. I was done. I think it was going from a high to a low that did it. I can't explain it completely, but it did me in. Every single thing I ever stress about even slightly seemed an insurmountable, unsurvivable challenge that I couldn't bare to face one more day. I was done.... not sleeping, barely getting by financially, infertility, Chloe's health issues and her unknown future, not meeting any of my personal goals because of fatigue... It all became too much. Thankfully, I never have to bare these burdens alone and I didn't have to face this alone either. Oby, family, friends... they rallied around me and I was lifted up and survived. I have sought professional help as well and that is making all the difference in the world. 

I don't mean to be such a drama queen. I just want and need to be honest. That is most important to me right now... to understand and accept my honest feelings so I can face and deal with them. Don't get me wrong, I still LOVE my life. I adore Oby and Chloe makes me feel a joy that anyone would be grateful to feel. I know that so many parts of my life are ideal and I would never, ever want more. Yet, there are still things that are hard, that I don't know exactly how to understand or accept that make me feel an overwhelming sadness that is nearly impossible to explain. This quote is the closest thing I've been able to find to put my feelings into words....

At the end of the day, I know that I have all I need. I have big, beautiful, all-encompassing love. I am literally surrounded and lifted up by angels. I have eternal hope and so many lovely things in my life.... but it doesn't mean that life isn't hard.

Anyway, if being honest about these feelings helps even one other person, then I'm glad to share it. I'll share more about what I've learned. Part of what I know needs to change is that I need to get back into this blog... writing is so therapeutic for me. Even if I'm the only person who reads it, I know it is what I need.


Jennie said...

Thank you SO much for sharing your feelings. I feel the same way at times. Jackson's negative behavior and saddness can be overwhelming. Sometimes we don't know how to help him and how to help the peace in our home return. These first few weeks of school have been rough. But... like you, the light returns and I once again latch on to the HOPE I've had before that in due time, all will be right and that this is but a moment. There is truly hope smiling brightly before us. I can't imagine all you endure with little sleep. It has to be so rough. I'm so glad you have found ways of coping and support systems. That is so important. Sometimes I feel like a wuss when I tell people this is hard for us. But... life is the real deal. This isn't a dress rehearsal, right? I think honesty is powerful and can be life changing. If nothing else, it lets you see where you've been and how far you've come. You are beautiful. Thanks so much for sharing and for your great example!

Kimberly said...

Thanks for sharing, it has helped me feel less alone. You're blog is so inspiring, and you have accomplished so much. I too reached a point where I had to get help with my feelings. Your little girl has the most beautiful smile, she reminds me so much of my daughter Ashley. Just remember, both you and your little girl have already made more of a difference in this world than some people ever will in a lifetime. Thanks for all you do for our children.

Ender1028@yahoo.com said...

If you haven't already, read Erma Bombecks poem about how mothers of disabled children are chosen; we WERE given a special gift; even more so if we have other children who share the journey with us.

Mo said...

I have nothing genius to say... just consider this a hug. And I love me some sweet Chloe pictures!!

Cristina Might said...


I'm glad you're on the road to recovery!

I totally relate to being "broken". With Bertrand's diagnosis this past Spring, something snapped. I think you're on to something with the High-Low hypothesis. The high of finally having an answer, quickly followed by the low of no-treatment, no-cure, and a mountain of work to be done if we're going to find something in time. It made finally getting a diagnosis look like a piece of cake. My teeny brain blew a circuit. I couldn't breathe anymore. To do anything (from writing a thank you note, to getting dressed, to leaving a comment) became a mountain of effort. Honestly, I'm still limping a bit. I think it takes a while to get un-broken--somedays are better than others.

That said, I hope you're journey to wholeness is fast and smooth.

PS - I love the Brene Brown stuff you posted! You inspired me to read her book "Daring Greatly". It was the kick in the pants I needed. As usual, you rock. :)

PPS - Give Chloe a big smooch from us! ;)

Mrs. Bennett said...

Although my circumstances are very different, I feel i can relate somewhat. My oldest child comes with unique challenges that are sometimes overwhelming for me and I've found myself wondering how I can go on. So much stress and worry and tears and fighting. Then other days are almost perfect. It comforting to know that there are others who struggle. .. especially when many families appear to have perfect lives with no real hardships. I know we don't talk much in real life, but i love you and think you are a wonderful mama!

Becca said...

Tara - look up blenderized/blended diet by g-tube (there's an excellent facebook group as well as various other resources on- and off-line), might make all the difference from here on up... even, possibly, with sleep.

I'm glad Chloe got through her surgery OK.

Laura said...

Not to be annoying because I know you didn't ask for suggestions and have probably read a ton already, but I'm reading Sleep Better! A guide for improving sleep for children with special needs and I just thought of you. Like I consider myself pretty well read on the topic of sleep but I wasn't familiar with a lot of the strategies in this book, so I thought I'd pass it along just in case. Best wishes.

Adriane said...

I totally relate... great job explaining that feeling. Kylee's g-tube has leaked for years (like, soaking and getting dehydrated leak). We finally had a "fix" for awhile and things were great. Just started leaking again. Man, it's like a cave-in on top of you. Hope it's gotten better since this post, hugs!