Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Sunday, February 26, 2012

My Legs Tell My Feet to Have Fun

But my lungs tell me to rest.  This was Eliza's own commentary tonight on her frequent coughing and shortness of breath.  It is sad to hear her say this.  And it is sad to know that after almost six years of pulmonology appointments and breathing treatments, there is no end in sight to it.  Tonight Eliza also told me that she thought music would help her lungs.  I have no idea where she got this idea, but given the failure of everything else to help her lungs, it could be worth a try.

It is hard to hear your six year old sound defeated.  It is hard to hear her say that she has to rest during Physical Education or Tai Kwon Do because her lungs need to rest.  It is hard to know that this is all because my body failed to carry her for a full nine months.  It is hard for her to know that people don't understand that she isn't coughing because of a cold, but because she trying to catch her breath.  It is hard for her to hear her friends tell her she is gross because she produces an astonishing amount of mucous and when she sneezes, well it can be an impressive sight.  It is hard to hear her ask when the coughing will stop and not having an answer.

I know that other kids have a much harder journey.

But it is still hard for my little Eliza.


Anonymous said...

Just a thought about the music part - I have had students in my Bands - from begginers through high schoolers - who have felt the benefits of playing a woodwind or brass instrument when they have asthma. I realize that being a premie and having asthma are 2 different things but it may be something to ponder at some point. I know there have been studies done about the effect of playing a wind instruments on improved lung function. And Eliza should tell her friends they're just jealous they can't rock out the multitude of mucus! :)


Anne, Eliza Grace's mom said...

Becky, I think the wind instrument is a wonderful idea! Eliza's coughing is essentially asthma, just that the origin is from her prematurity. Thanks for the great idea!

Sarah M. said...

I'm sorry. Sydney hasn't really made comments like that yet, but I know they are coming...sigh. I hate that I was the one whose body got sick but she's the one who is paying for it.


Anne, Eliza Grace's mom said...

Sarah, I think the guilt is worse this time of year, right around her birthday. But I have to say I am amazed at how well Eliza is able to talk about her physical limitations and illnesses and I love Eliza's theories on how to "cure" them. For example, she thinks the Tai Kwon Do instructor should do the moves slowly, like the ladies in Chinatown. Took me a minute to realize Eliza was taking talking about Tai Chi!

Melissa said...

Anne, this breaks my heart. I understand the feelings of guilt all too well, also especially this time of the year. I wonder when Daphne will realize that she is different. It's coming. It never ceases to amaze me how smart and perceptive Eliza is. The way she articulates certain things...wisdom beyond her years.

Barb said...

Oh my. This breaks my heart. I was just talking to a co-worker and we've both finally gotten over the crud that's been circulating here for a few weeks, and we both agreed that in general we're really, really lucky that we don't have long term health problems to deal with. Eliza is such a marvelously delightful child and your posts here are always so inspirational, that it's sometimes easy to forget that she has a lifetime of challenges. Thanks for reminding us to be grateful for our lives and to be compassionate to those who struggle. I hope the music works... for both Eliza and you. :) You're such an amazing mom, and she's such an extraordinary child.

BusyLizzyMom said...

It never ends does it? We so hope think our kids are in the clear and things will finally be 'normal' but it doesn't happen. Yes we are insanely lucky to have our girls here and doing well despite their odds but these reminders are harder to take on some days.
Elizabeth despite being on O2 at home and being a 25 weeker she has done well respiratory wise, last year was the first year we didn't need puffers when she got sick. I was told by age 7 her lungs would have regenerated enough healthy tissue and for Elizabeth age 6 was a dramatic improvement.

Katie said...

I just wanted to say that my sister who had horrendous lungs and had to spend a month at an out of state hospital when she was 10 just to get stabilized, no longer takes any preventative medication at 22. She actually just rebelled and quit taking them, but then found that she didn't really need them. And we never thought she would be able to stop taking them. So it is amazing what time and growth do. :) Wishing you and Eliza the best!

Amy said...

I'm not sure how I found your blog, but I've been reading it for the last 2 evenings, and made it all the way back to the beginning, instead of sleeping. Not the wisest thing to do as a single mom. Oops.

Your writing is powerful and moving, and your little girl is fantastic.

Eliza Grace's story makes me even more grateful I was able to keep my twins in for 36.5 weeks, and that at 3.5 months they're healthy and well.

Like everyone, I have stories, but no useful advice. A friend of mine had a micro-preemie 17 years ago, and her daughter is now applying to colleges.

A cousin is a feeding therapist, and has mentioned to me a few times that some kids with sensory feeding issues can handle crunch better than soft since with the crunch, they're better able to keep track of where in their mouth the food is, so they're less likely to be surprised or gagged. And that's all I know about feeding kids with sensory issues.

From one single mom in Manhattan to another, congratulations for all you've survived and accomplished, and good luck for Eliza Grace's continued growth and accomplishment.

Anne, Eliza Grace's mom said...

Thanks Amy! Congratulations on your twins!

I think your cousin is very right about the crunchy/smooth textures :)