After a very busy day today, Charlie and I retreated to my bedroom for an impromptu girls’ night. She sat perched in her bouncer and gnawed on a bread stick to soothe her teething gums while I scanned some things on my lap top. Finally, we were relaxing. I scrolled through my email and browsed the numerous message boards that I lurk on.
The message boards can be helpful as a place to rant to others that understand or loaded with useful advice and guidance from others who have been there. On the other hand, it can also be somewhat discouraging.
Almost daily, I see posts from parents who gush about their preemies that have “caught up” or no longer have health concerns. I am happy for them. I would be lying if I claimed I don’t hope we get there one day. However, I have noticed an unspoken void. I wonder why I don’t see posts that read like this:
My twenty six weeker was born weighting 790 g. Now, at sixteen months, she has been diagnosed with spastic diplegia due to PVL, a feeding disorder, minor vision concerns, sensory issues, and a speech delay. She has come a very long way since coming home from the NICU. She is very bright and has “caught up” in the cognitive and social areas. We have a great time laughing, singing, playing, and dancing together. Even her therapeutic exercises are mostly fun. I am so proud of her and couldn’t love her anymore. I, truly, am blessed.
(Now, for the before and after pictures that usually accompany these type of posts.)
Why are the babies (and children) who don’t catch up celebrated in private? These are the posts that would actually give me hope (rather than a discouraging pang of envy). These are the parents who can tell me that things can still be alright. One day, I will have the audacity to make such a post. I want others to know that even if their babies don’t “catch up” or have long term issues… life can still be pretty grand.
Cheering on Charlie 
October 19th, 2013 at 9:52 PM
I’ve found that those who say their preemie have no lasting effects are often in a state of denial and/or ignorance. Their preemie may have a host of issues that they are not attributing to prematurity (but are in reality, exactly that…impacts of prematurity). Or, I find a lot of preemie parents making these claims in the first year…as if it is even possible to know, at that point, if there will be lasting effects. Or perhaps, these same parents will suddenly be wondering why their child is having trouble in 1st grade, with reading, etc, and still not attribute it to prematurity. That’s not to say that it isn’t possible to make it out of this journey unscathed, but. I’m sure, if someone outside our close circle, looked at Jack, they would easily say that he has no lasting effects. But, they don’t see the daily breathing treatments, the weekly OT/PT/Speech sessions, the appointments with GI/Nutrition/Pulmonology. Based on appearance alone…he would “appear” to be “caught up.” I try very hard to stay away from those phrases…you know, “happy, healthy, with no lasting effects” on my blog, because I want others to know the real deal. But, I also find myself, in real life, saying he’s doing very well…and then, if I go into anymore detail (about therapies, appointments, delays), I usually catch a vibe of “disinterest” or “disbelief.” It’s one of those times that I feel like I live in a whole different world than most moms. I’ve written about Jack and his not being “caught up” many times:
http://jackryansjourney.blogspot.com/2013/09/iep-at-three.html
http://jackryansjourney.blogspot.com/2012/11/normal-0-false-false-false-en-us-x-none.html
And about my own lack of “catching up”:
http://jackryansjourney.blogspot.com/2012/11/do-preemie-parents-catch-up-by-2.html
As always, what you write resonates with me. Thanks for being real.
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October 19th, 2013 at 10:19 PM
I will be sure to check these out. Thank you so much for the compliment. Honesty and real is exactly what I go for. Other than Tatum’s remarkable blog at http://www.aintnorollercoaster.com I felt alone in that I did not feel a state of happily ever after.
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October 19th, 2013 at 10:29 PM
I should also mention (other than on my blog) there seems to be one correct answer when people ask how Charlie is… “She’s fine!”
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October 19th, 2013 at 9:57 PM
P.S. I’m a member of a few private FB groups…where we celebrate and vent often. But like you said, it’s “private” because when we celebrate something others view as “trivial,” we got mocked. And when we vent about very real issues, we get told to just be glad that they are alive or that it could be worse. Now I’m wanting to blog about it too! Want to collaborate??
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October 19th, 2013 at 10:16 PM
Blog away 🙂 One of the many reasons I keep a blog is to start or continue a dialogue. I am honored when linked to. Additionally, I am flattered when other bloggers feel an idea is worth blogging about. I look forward to reading your take on the matter. If you had something different in mind, let me know.
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October 20th, 2013 at 9:17 AM
I would love to see some posts like that too.! My 23 weeker is amazing but may not ever “catch up” in some areas.
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October 20th, 2013 at 2:21 PM
I’ll admit, I left many of the message boards because I didn’t find enough people who understand and, heaven forbid, we’d mention that….we’d get kicked off the boards. There is much that we all understand and then there are things that many don’t.
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October 20th, 2013 at 5:25 PM
You should write your post! So many people desperately need hope that’s also keeping it real. 🙂
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October 20th, 2013 at 7:46 PM
Looks to me like you’ve just written your message board post…just post it! I dare you 😛
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October 20th, 2013 at 10:36 PM
I’ve already ruined the experiment by revealing my thinking behind it. Besides, I’d rather have the discussion about the post than merely the reaction to a post. Maybe performance art will be in my future 😛
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October 21st, 2013 at 9:52 PM
My twenty seven weeker was born weighing 420 grams (14.8 ounces). Now at 33 months she has spastic diplegia cerebral palsy due to PVL. She is 100% gtube fed, severe oral aversion/facial defensiveness, severe sensory issues, doesn’t eat, walk, or talk and still requires oxygen at night and for naps. She “tests” between 9-12 months in EVERYTHING, but loves laughing, being tickled, music, books, Mickey Mouse and Sofia the First, and playing with her two big sisters. We spend hours each day in therapy and when not in therapy we’re “still in therapy” if you follow me. 🙂 We too, are completely proud of her and in awe of where she is today! So glad I found your blog (and I hope you didn’t mind my recreation of your message board post. 😉 Your doll baby is gorgeous!
Jackie
http://www.parentingtheateam.blogspot.com
http://www.facebook.com/rasingalligrace
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October 21st, 2013 at 10:23 PM
I do not mind at all. I love that you did it. 🙂
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October 23rd, 2013 at 9:57 PM
I love this. I’m a member on countless boards. I rarely post unless I have a question. I agree with everyone who has responded here. Particularly, Heather L, who, like me, detects a note of ‘disinterest’ when she goes any deeper than, “oh, he’s fine, thanks for asking.” For me, what’s worse, is the feeling of disbelief I get from even the closest family members. My son was a 26 weeker, but with severe IUGR, he was the size of a 24 weeker- 1#9oz. All the usual suspects, ROP, Grade III IVH, Severe BPD, Severe reflux and the list goes on of course. At a week shy of four years old, when people look at him, they completely forget about his “rough start” and stop just short of accusing me of being at best overprotective and at worst a hypochondriac in relation to his health. This infuriates me.
Yes, he is the love and joy of my life. Truly. But we STILL, have no fewer than 6 appointments per week (and that’s just therapy). He’s in a special education program (yes, very, VERY early) because of his severe global delays. He does walk, talk, see and hear. He is cognitively age appropriate — actually, I think he’s a stinkin’ smarty pants. He’s the clumsiest little fellow. And the littlest clumsy fellow at just about the 3rd percentile for his age. He has been diagnosed with autism. (This, I feel speaks to the propensity of docs to assume the “catch up” should occur by two as well. My son got the autism dx at 18 months adjusted because he was still non-verbal. He is now quite social and does have a slight articulation delay but never EVER stops talking and chatting. He’s affectionate and loving. It might be denial, but I think his issues were absolutely prematurity related vs ASD related. Either way, that was just one more dx and one more set of doctors added to our list.
Yes, IS the love and joy of my life, but I can’t say I wouldn’t change a thing (another common message board comment!). I would change a lot of things. I would make it so that he could go one day without having to “work” before he plays like all the other three year olds. I would’ve shortened the time he was intubated so that his oral aversions and high pallet wouldn’t cause him to still eat stage 1 baby food at almost 4. I would allow his fine motor skills to stop fighting him so that he might be able to take off his own clothes, be proud to put on his own shoes. I would take away his sensory integration issues so that he could understand the cues his body might send that he has to go to the bathroom – maybe then we could start potty training. I would change the way people are so insensitive and judge situations on first glance-. My son is adorable and looks completely “normal” – but I struggle. He struggles. Every. single. day. He will never catch up.
I think Heather is also right about the fact that many mp moms are in a bit of denial. I also think a certain amount of time goes by and many of us forget about the notion of “catching up.” I think instead it becomes about our own child’s potential and finding joy in them reaching their own milestones, however small or insignificant they might seem to the ‘others.’
I know this is quite a ramble, but these posts have stirred up so much emotion and I deeply appreciate it the posts and the opportunity to share.
And yes, you forgot ADORABLE. Your girl is such sweet little toddler perfection.
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October 23rd, 2013 at 10:38 PM
First of all, don’t apologize for rambling. I share many similar feelings. It is OK to rant or go off on tirades… that’s what my blog is about. I love when other people join in! 🙂
Thank you for the comment and feel free to ramble all that you want. That’s why this blog is here… to honestly discuss the ups and downs of post NICU life. I am honored and flattered that you shared your thoughts and feelings.
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October 26th, 2013 at 1:42 AM
Every mother is in a different place. You should find the joy in the place you are know. Thinking of you and sending hugs your way from Oregon. Found you on Love That Max today. Happy Friday to you and your family.
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October 27th, 2013 at 7:28 AM
Great to come across your daughter’s story! What a fighter she is! I am a premmie myself, born one of a twin at 31 weeks, and have Spastic Diplegic CP as a result. I am 21 now and although life has been challenging at times, just want to encourage you to brag about your daughter’s accomplishments all you like. Even if she has to navigate the world in a different way, she will figure it out and have a fantastic life with your encouragement, including opportunities she and you have never dreamed of! For example, in my case, I have had the opportunity to travel to the US, India, and Japan (I live in NZ) as a direct result of living with a disability, I have had the opportunity to do advocacy work on a local, national and international level, and to constantly challenge people’s assumptions. I am a university student working towards a law degree with honours. I live completely independently (in fact, my family lives in Australia – an entirely different country) and have some fantastic times with my roommates (one of whom is a wheelchair user, the rest are able-bodied). I have bungeed off the tallest building in the southern hemisphere. I have skydived. I have had the opportunity to represent my country in the sport of boccia. I have tried rowing and skiing. I truly believe there is nothing I cannot do with a little adaptation, and I can honestly say that my life is great (most of the time) – not in spite of or despite of my impairment, but with my impairment. That isn’t to say it has been great the whole time – my teenage years were particularly tough, and I am still ‘behind’ my peers in terms of love-life related things, but generally, I am very happy.
So just remember, this is only just the start. Charlie has already come a long way, and I’m sure she has so much potential to do great things. Just tell her you love her, that she is beautiful, and that she can do anything as long as she puts her mind to it, and I’m sure she’ll make the most of her life!
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October 27th, 2013 at 11:34 AM
Thanks so much for commenting. This was such an encouraging comment. I hope one day Charlie grows up to be amazing like you.
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