Friday, January 4, 2013

A letter from Preemie Families

A preemie mama that I follow recently posted this on her blog.  It rings so incredibly to true to me and probably to all moms of preemies.  Even though some of our kiddos may look "normal", their preemie problems can follow them for a long time.  In our case, bad lungs.  All three of ours, but especially Noah and Addison, have lung disease.  They will probably eventually outgrow it, but in the mean time, we need to try to keep them healthy.  Something as simple as a cold could put them back on oxygen, back in the hospital or even back on a ventilator.

Tatum, hope you don't mind.  But, you said it so well.  I don't need to reinvent the wheel!
                  (her address is http://aintnorollercoaster.com)


A letter from Preemie Families

Dear Friends and Family,
Truth is, it makes me really uncomfortable to ask you to wash your hands when you enter the house.  I hate that I have to ask if you have had your flu shot and are up to date on your TDaP (pertussis) vaccination.  I am just as upset that I have to cancel at the last minute because someone in your family, or our family, has the sniffles.  Actually, because we have limited exposure with the outside world, I’m probably even more disappointed to miss your company.
The last thing I want is for you to feel unwelcome in our home or in any way put out because I notice when you sneeze into your hand and then try to touch my son’s hand.  And do you know what?  In most cases, I agree with you when you say that colds are just a normal part of life.  I know you think I’m paranoid.  I understand that it’s embarrassing to be asked about your hygiene. I know your suggestions about immunity building are well-meaning.
I also must tell you, I hear your exasperated sighs and see your all-knowing eye-rolls at my requests.  When you respond begrudgingly, my embarrassment dissipates and is replaced with anger.  It makes me really angry that you could put your pride in your cleanliness and healthfulness over the life of this child.
what a medically fragile child looks like
You see, Owen is doing remarkably well and has overcome so much in his 20 months of life.  He is so much better than six months or a year ago, but the fact is, he is still amedically fragile child.
This week there have been so many top news stories about the thousands of Americans in the hospital right now due to the Flu.  In Minnesota, one healthy teen has died and another is struggling to live.  As a parent who has watched my child fight to live, my heart breaks for the parents of these children.
At the same time, I am alarmed for my family.
You’ve asked in the past how you can help our family.  The biggest way you can help is this:
  1. When we make plans to see each other, volunteer that you received your flu shot more than two weeks ago.
  2. When you arrive at my house, greet me and the baby and say, “I can’t wait to hold you, as soon as I get my hands washed”.
That’s it.  Those two simple steps will make me feel more support than any other gift you can give.
Maybe, like some say, “paranoid” is the correct word, but really, I don’t care.  I’m just trying to do the best I can for my son.  He won’t always be medically fragile, and while he is, I hope you’ll bear with my requests and support and respect my best efforts to love and care for this child who we all want to see succeed.
Thank you for your understanding, and sticking by our family during this difficult time.
Sincerely,
A Preemie Family

4 comments:

  1. Love it, helpful for all. I can't imagine anyone would consider it paranoid but I wouldn't have thought to mention my flu shot information so I glad to know this.

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  2. I've been following and commenting on your blog for a while now... In November, after 4 years of infertility, I gave birth to my son at 33 weeks. We spent 3 weeks in the NICU. While not nearly as challenging, long, or scary as your stay, we're still dealing with a preemie during the height of cold and flu season. I cannot believe the number of people who are criticizing us and calling us paranoid for keeping our LO out of the public for the next few months. This past week I've been working on a similar blog post... I know I'll never be able to stop the critics, but at least I can have my say! Thanks for posting!

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  3. and yet I am amazed at how open you have the kiddo's. So please never, NEVER apologize for being GREAT parents. If I need to back off, wash hands, or whatever, ask. But truthfully, I enjoy watching the trio from the balcony at church.

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  4. Thanks for sharing, Emily! And for sending traffic my way - behind FB and Pinterest, your site was ANRC's top referrer today. This post has taken a life of it's own - it seems many of us feel this way. I hope it changes behavior, but even if it doesn't, anyone that feels this way can be assured, we are not alone.

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