Ross and I just spent the last 45 minutes looking through old photos of the past 5 years. Most people look back on old photos and reminisce about how wonderful the times have been, how precious the memories are and how wonderful it is to look back!
Honestly, ours are painful. I cried… A lot! I look into all of our eyes in the pictures and see pain. Andon feeling so left out (yet, still smiling) and ignored. Ross having just blank stares. Noelle having pictures of barely surviving, hooked up to life support and in the hospital smiling. Then there’s me!
For the first probably 2 1/2 years after Noelle was born… My life was absolute chaos! I felt so GUILTY! Guilty that I couldn’t keep my baby inside and mad at my body for failing me and my daughter! Angry for not seeing the signs sooner that she was on her way! Mad that there was no turning back time to keep her in longer! Guilty describes me best. I felt like my body failed and was responsible for turning our lives upside down. Not to mention, I often felt guilty for waving my white flag and admitting that sometimes, it was easier to admit her into the hospital rather than be so sleep deprived that I screw up her meds (yup… That happened!).
Many of those pictures were from our first few weeks at home. Noelle spent 222 days in the NICU. Came home for 3 1/2 weeks and then went back into the hospital until a few days before her first birthday. I took a lot of pictures. The doctors told me that her getting sick would potentially be fatal… I felt like pictures had to be taken, just in case!
Because of this, I turned into the germs worst nightmare! I wouldn’t let anyone in our home without washing hands. I made Ross change his clothes after work before picking up Noelle. Andon and I stayed home with the exception of Noelle’s doctors appointments. I even fired our first home nurse because she was a smoker and just dirty and gross!
I had no friends! I didn’t let them in much, especially after having to quit my job! And realistically, who would want to be friends with me? I was a crazy fool.
Noelle needed nebs every 2-4 hours round the clock. Ross had to sleep at night so he could work and function during the day. Which meant I slept about 1 1/2 hours at a time, every few hours only at night. I had to potty train and somewhat pay attention to Andon during the day. I was a sleep deprived zombie! Most of the time, Noelle also needed meds round the clock (She came home on 16 medications)!
There was one day after staying home for a few weeks by myself… Andon was acting out (heck, I would have been screaming for attention if I were him) and Noelle was screaming and desatting like she did everyday! I was overwhelmed, sleep deprived and had a to do list of too many things. We were in the process of trying to find ways to save our home and avoiding bankruptcy. I lost it… Andon was in his room screaming, Noelle was downstairs crying and beeping and I locked myself in my bedroom bathroom and cried… For what felt like hours. Crying didn’t help me face reality. I pulled myself together, said a prayer and found the strength to carry on with the day. I always tried to put on a front when people called or came by… But I was miserable.
Honestly, I didn’t realize how miserable I was until I started to look back at pictures. It does give me a sense of sadness still today. How our lives were turned upside down in an instant…
Thankfully, the guilt and anger are gone. Replaced by a little bit of sadness. Our little family has been through a lot and much of our experiences have changed us. I’d like to think changed for the better. I’m a far more patient person now than I ever pretended to be before. Andon doesn’t seem to be too phased and can’t remember “BN… Before Noelle!” Ross still gives me that blank state occasionally when I talk too much about the medical stuff. Me? I’m a far better understander of people, life, death, hard times and how everyone (at one point or another) just needs a break!
Just putting it out there… There are a LOT of feelings that come with having a preemie and a special needs kiddo. It has taken me almost 5 years to admit this! Typically, when we say we are fine… We are not! Usually, when we have a super upbeat attitude about something medical or developmental… It’s because (partly) we are still convincing ourselves! We are far from super human… But would rather have a sleepless night researching a cure or cause than sleep not knowing what’s going on. I’ve heard a special needs momma does better research than the FBI… I’m almost positive this is accurate!
I guess my point is that, yes! I smiled and put on a happy face while my world crumbled around me. But really… What choice did I have? Pretty sure if I had acted the way I felt back then… I would have been put in the looney bin! Realistically, I didn’t (and still don’t) have a choice! This is our life! Sometimes it’s still miserable! Sometimes it’s absolutely awesome! Thats why its called LIFE! Just like any normal family… We have our ups and downs.
I had a doctor tell me in the NICU that Noelle’s life would be a bit of a roller coaster for a while. I figured that. However, I failed to realize that our whole family would be on this “ride.” Obviously, our “ride” isn’t over yet. I’m not sure what (if anything) I would change at this point. This is our life… It’s normal to us now! Looking back is hard… Looking forward is sometimes hard!
One day at a time is perfection!
Xoxo,
Stacie 🙂
What Doesn't Kill You, Makes You Stronger... 