Friday, April 5, 2013

Preemie Life...

I read an article the other day at:

Ain't No Roller Coaster: A Micro Preemie Family, Beyond the First Year (full article here)

A micro preemie momma wrote about what she wishes everyone knew about preemie life. I loved it so much that I just had to share! I have put a few of her thoughts in blue below, while my personal ramblings remain in black...because we all know I just can't help but put my two cents in :).

Premature babies aren't just smaller versions of full-term babies. Premature babies are born sick. By referring to the word where they stay as "NICU", it seems that many people forget that the last three letters stand for Intensive Care Unit. Prematurity, regardless of gestation, presents serious long and short term health and developmental concerns.

I am (over) sensitive. The emotional toll of prematurity is significant for everyone in the family. You may mean no harm when you complain about your last weeks of full-term pregnancy...or complain about your healthy child being sick (a normal sickness like a cold, stomach bug, or flu)...or try to tell me I'm being overprotective of my child. These are reminders to me that you don't, at all, get my me or my experience. That makes me feel lonely, sad, and a whole slew of other emotions that I haven't even figured out yet. There isn't some magical point where I become "okay" again. There may never be a time when I'm going to be able to look at you and not wish "if only". If only I could feel those child bearing pains the last weeks, or feel my child in the womb jamming against my rib, or being so big I had a difficult time sleeping or waddling around or labor pains. If only my Max could be healthy enough that a common cold meant extra snuggles on the couch rather than a two week extended hospital vacation.

I am not amazing. I don' deserve to be on any parenting pedestal. Some days I'm a great mom, some days I pray that I didn't just screw up my kids for life. The tasks on my job description for mom may look a little different from many others but at the end of the day, I'm just doing what I need to do to give my kids' their best chances. Trust me, it is what you would do too.

I miss you too. Partly because of those extra tasks on the job description and partly because of my new emotional needs, I don't get to see my friends as much now. For those same reasons, I do still need to hear from you. Thank you for making the effort, even if they are one sided. I like to hear about your life and not just talk about mine. For me, it is nice to have an escape because I feel like all I do is talk and assess Max's medical challenges and disabilities. If you're having troubles, I still want to be able to help you through them. You may need to be more direct with your needs from me, but I'm still here for you. I value our friendship and am so thankful that you've stuck by me.

I'm exhausted. I believe that most parents feel this way. I love and adore parenting, but it is hard work emotionally and tiring physically. From my experience of having two preemies and now a healthy baby girl, preemies do seem to add a lot more work to your parenting load. Everything that Zoe is doing naturally, we have had to teach Kason and Max through extensive therapy and hard work. Max alone has 13 doctors and therapists on his medical team that we see on a regular basis. A normal week for me is at least 4 appointments (and that is only for Max...not including any appointments my other two may have). Most days I think this captures a preemie mommas' life...

Every premature baby's experience is different. Your sister's best friend's cousin may have had a 22 week 6 day preemie who was less than one pound at birth and is now a Rhodes scholar and Olympic athlete...or maybe she's "just fine now"...but that in no way predicts the outcome for any other preemie. Preemie parents' concerns and fears for their children's immediate and long term future are REAL. You're right, pondering on those concerns won't change anything, but if you just brush the concerns under the rug, you're not being honest or you don't understand the risks of children born way too soon. To be 100% honest with you right now, this is my most difficult struggle with being a preemie momma. These "hope" filled stories or people's off-hand comments about how my child "will be just fine" are extremely offensive. I feel like people are trying to make themselves feel better rather than providing the encouragement they "think" they are for preemie parents. I have come a long way in my healing process so that I now smile without screaming on the inside and can appreciate the sentiment and extend grace upon the ignorance of comparing the lives of preemies because each of their journeys are different. You may be wondering why this hurts so much if you have never been through this experience. My hurt stems from the fact that Daniel and I came to grips that Mr. Max wasn't going to be a "normal" kid a long time ago. We have embraced our new life with Max. When someone tries to tell me of the miraculous healing of a friend's preemie or that he will be "just fine" makes me feel like you don't accept my child. That he needs to be "normal" for you. If you are only looking at the tubes or his disabilities, then you are missing him are missing the Max God designed.

While being a preemie parent has its definite struggles, for me personally, it has been more rewarding than I could ever have imagined. I feel honored to have witnessed two miracles in my life. 

My first miracle, Kason Maddux, was born at 29 weeks weighing 3 pounds 4 ounces. He had  around a 2 month NICU stay and saw a therapist and nutritionist for 2 years to help him catch up developmentally...
This was me meeting him for the first time...48 hours after he was born. 

My second miracle, Maxwell Brooks, was born at 27 weeks weighing 1 pound 13 ounces. Max had a 6 month NICU stay and we still have ongoing medical challenges and severe developmental delays...
 I met him 36 hours after he was born. This is Max as a newborn wearing Daniel's wedding slipped easily over his tiny hand.

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