Wednesday, August 22, 2012

How Do You Get There?

I had a question posed to me last week. I was blogging about how, after three years, I was finally feeling normal again. Like my old self, but better. She asked:

How do you get there? As a mom of a 26 weeker (now 2 years adjusted in May) I still find myself wondering where I fit in now and worrying about the future. Any tips on how to change ones perspective and stop the cycle of anxiety and asking "why me?

Wow, what a question! I have been thinking about it ever since. I have a few suggestions with a disclaimer that these are what worked for me. Take it or leave it, but I hope to encourage you all on your journey towards accepting the premature birth of your child and figuring out the whole "what happens now?" question.

Jessi's Tips on Getting There

1) Time

As hokey as it sounds, time really has healed a whole lot of wounds. You absolutely have to give yourself the space to just be. To think. To process. To try things out, move on, and work through all the intense emotions that you will no doubt feel. It took me three years and I still feel like I'm in the process. For some, it may take shorter. Or longer. We all experience things differently, but there is comfort in knowing that you probably won't feel the same six months from now.

The key during the waiting game is learning acceptance. Acceptance of your situation. Acceptance of your new way of life. For me, I struggled desperately with the idea that I now had a special needs child. I hated that term. I hated the pity I received. Not only did this life hand me the cruelty of delivering a baby at 23 weeks, we now had to wade through the waters of having a disabled child. It's my attitude that needed the biggest change. It was a matter of constantly reminding myself that having Jack alive was the greatest gift I could have ever received. My attitude and coming to terms with the way things were took up a big portion of those three years.

2)  Filling the Void

Having Jack meant that I had to give up my career. This was probably the single biggest struggle for me and my personal identity. I never saw myself as being a stay at home mom. It just wasn't in my DNA and something that never crossed my mind. And not only was I now a SAHM, but I was mom to a medically fragile child. A child that was in RSV isolation for basically two years (meaning mommy was in isolation, too). A child that was not eating. A child that was not mobile. My days were marked with stress and exhaustion over fear that my child would end up in the hospital again... or even worse.

I had to do something with my time at home. Something that was purposeful beyond being Jack's mommy. The first year I baked. I baked and baked and baked some more. It was my therapy. It was delicious. And it gave me a little something to do that made me feel whole. The second year, I started this blog. I decided I would blog five days a week. I took up photography. I studied photography like I was in school for it. I started to take other people's pictures. Then I started to make money at it. I took the time to really focus on my creative side.

Yes, I missed my career. I missed that part of my brain. But I tried to fill my hours with things that had some personal fulfillment. Again, this was a conscious effort on my part to try and change my attitude. Not every day was a good day. Some days I wanted to crawl back into bed and not face Jack's schedule and needs. Other days were glorious, where I marveled at my miracle boy and everything he taught me about life.

3) Intentional Relationships

Even though Jack was in RSV isolation, I still had to get out of the house at least once a week. I needed the social interaction. Honestly, sometimes the thought of seeing people and getting out of the house was very draining. There were days I didn't want it, but I knew I needed it.

It was often awkward to meet up with people and talk about Jack and what we were going through. I felt like Debbie Downer. I struggled when someone asked me how I was doing or how Jack was doing. Do I really tell them? Or are they just being polite? Do they really want to hear that things are not good? It was a vulnerability that I was not used to.

I started to be very intentional about my relationships. I chose to be around positive and trustworthy people. I could not stand drama and fled at the sight of it.  If someone was a complainer (how dare someone complain about their easy life!), I didn't pursue it. I started to seek out relationships with people that I knew I could be safe with. I just wanted to feel comfortable. I needed normal. I needed easy. And I needed the support.

I also found this truly wonderful community of micropreemie moms. They were, and still are, my lifesaver. I don't thank them enough, but they helped me more than I can put into words. I count them as some of my closest friends.

4) Remembering

Having Jack turned my world upside down. Whatever I thought was a pressing issue the week before he was born, was immediately forgotten the minute I had my c-section. It kinda stayed that way for two years. I didn't have the time, energy, or brain power to think about anything that I used to be passionate about. In fact, thinking about those things used to make me sad and long for my old life.

But now, I remember. I remember what used to make me tick. I remember why I used to be interested in those things. What used to get me excited. I am still the same girl with the same dreams. It just took me a bit to remember.

5) Soul Care

My spiritual life and my belief in Jesus were the only thing carrying me through on many days. I was angry, depressed, worried, and scared a whole lot of the past three years. I questioned, tossed and turned many nights, and wondered why this had happened to us. But for my hope in Christ, I would have been lost. I had an anchor that got me through the darkest of days.


The cycle of anxiety and asking "why me?" may never go away. But I think I've learned to be content in this season.
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Amy said...

i love that - content in the season. I think it's a great lesson for everyone. i know for me, having ryan changed my perspective on so much! changed my perspective or changed me, i'm not sure which, but i know i'm a better mom for having gone thru some of the preemie stuff. i look back now with the big kids and think about what i took for granite with say all that now as i'm ready to run out the door and hide from all of them! they are driving me nuts right now! i've had to come down with the hammer this afternoon about getting chores done! i have it, but it's a necessary part of parenting!

Jacqueline Ernst said...


Thanks so much for being honest. I feel like so many other mom's done understand. And the isolation is the worst part - even at 17 months corrected - we have no idea how strong his immune system is. People take for granted that a runny nose is just a runny nose and not something that could put a little one in the hospital.(hello meningitis scare of summer 2011! - and at church no less)

I'm glad you've found ballance in mommyhood - at least a bit. And I'm so excited to see Jack grow! He's getting so big and strong.

Becky said...

Simply beautiful. Once again you said everything I have trouble expressing. Have you considered turning the blog into a book. Not so much about the nicu...but all the stuff that has come since. You give great advice ......maybe we could have an ask Jessi page :)...

Jonathan Weaver said...

Jessi, I am not the mom of a micropreemie, but I wanted to let you know what an encouragement and and inspiration you post was today. We all need to learn to be content in the circumstances that God puts us in. Thanks for sharing!

LeaAnna said...

Thank you for sharing! My twins are 11 months old and I'm having an extremely hard time with, last year at this time I was... And I find myself wishing I could go back but then I stop and think about what a blessing my girls are and even though we all struggled and had ups and downs and still do, I'm do very thankful they are here with us! As I think about the up coming RSV season and the isolation we are facing once again, I think I'd rather have it this way than others. While its still hard, I love my life as a preemie momma!

Becca said...

This is truly inspiring. I can relate on your experience,during my lowest and saddest time only God that I can turn to.