Friday, May 3, 2013

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. To go to therapy. To 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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Mandy Gramkow said...

Love this!

Rachel said...

I'm so glad you reposted this. My daughter was born at 25 weeks last year and I am getting close to the end of my maternity leave - and realizing that I cannot possibly go back to work and I've been struggling with that. It seems like so many of the blogs I've found don't talk about the SAHMs that didn't want to be, but I'm glad to know there's someone else out there who felt the same way - and that it turned out well for you.

siobhán said...

thank you for this article, it was like you were right there in my head. My little boy was born at 30 weeks having had a severe brain haemorrhage in utero at 25 weeks which was diagnosed on ultrasound. He had meuconium peritonitis at birth and required surgery and an ileostomy. Two weeks after this he was diagnosed with cystic fibrosis on top of which he developed chronic lung disease of prematurity. The doctors told us he wouldn't see christmas last year and to just enjoy the precious time he had left. I didn't believe them and told them they were wrong and I was going to take him home someday. No one believed me at the time but Robert came home, on room air no tubes in january of this year! We are now home 16 weeks (we spent his first 18 in hospital)and he is doing great. Of course we were in lock down to prevent RSV but now the summer is coming around the hospital have told us we can start to move out a little with him (of course with lots of precautions). Now that our life seems to be settling somewhat (as much as any life settles into a routine with a child with special needs AND a life limiting illness)I found myself pausing for just a minute yesterday and the past eight months and all the emotion, challenges and turmoil we have faced just came rushing in on me and I was overwhelmed. There is no one of our friends or family that truly get what we have been through and so coming across your blog today was such a breath of fresh air to me, a virtual hug! So thank you for sharing your little man's story, we send you good wishes and I look forward to reading more on his progress.

Jessi said...

I never have felt I fit the mold of typical mom, so it makes sense I have a kid who breaks all the norms! Glad this post resonated with you!

Jessi said...

Wow, thanks for sharing your story! So glad you came upon the blog today. Your boy sounds absolutely amazing! You are still early in your journey. I just want you to know that you are a great mom and you will get there.

Leslie Hennigar said...

Hi Jessi! I have just spent the last few days reading your blog about your amazing little guy! We too had our son Christopher early at 31 1/2 weeks. Certainly not a micropreemie like Jack but still early! We were fortunate that the nurses called him a "boring preemie" since he didn't really have any complications, just needed to grow and learn to eat. He was sick a lot that first year though which slowed him down on his gross motor skills-didn't walk until 22 months- I remember the comments!!! Of course at the time it was stressful as was P.T. but now he is a fiesty red head who doesn't walk but RUNS everywhere! I just wanted to thank you for sharing your story! You are so positive and Jack is adorable! It seems like your husband, parents and entire family have been a wonderful support system throughout this journey! That's how ours are too, thank God! Christopher is obviously a much less extreme situation but i still could relate to a lot of your story! Thanks for making me appreciate my family even more!!! Hugs from a preemie mommy in Mn!!!

Jessi said...

Hi Leslie!
I love hearing from you and about your story! The NICU is never easy, no matter how long you are there.

Anonymous said...

Jessi, as others have already said, THANK YOU for re-posting this. Our twins were born at 25 weeks in November 2011, and I have often wondered "how long, o Lord? will you forget me forever?" As you said in your post, "I was angry, depressed, worried, and scared a whole lot" in the last 17.5 months. Our daughter has her challenges, but she is doing fairly well. Our son suffered from bilateral brain bleeds and is facing many more challenges. While I know that he is an amazing miracle and am so very thankful for have him with us, my heart aches at times when I wonder what his future might be like. I have only recently run across your blog in my search to find a "community" of micro-preemie moms because I have realized how much I need the support of others who are traveling a similar road. While all of us, our kiddos, and the journeys we are on are unique, it is such a blessing to find others who can at least relate to what I'm going through. In this post (and others), you have articulated some things I really needed to hear to be encouraged. Thank you.
God bless,

Jessi said...

Hi Nicole,

That is exactly what this blog has become - a community. And it's due in large part because wonderful people like you comment and tell your stories! Thanks for the sweet note.

Shawnda Ereth said...

Hi Jessi,

I read your blog occasionally because I know of your family through my dad and my aunt who are acquaintances of your husband. I love this entry! Thank you to all of us who have been there or who are going through it. I am the mother of 24 week triplets--now 8 years old. I think you hit the nail on the head with how to get through it but I found one more thing helpful. I wasn't much of an exerciser but I found getting up early and getting in a little bit of activity helped with the stress that can come with having preemies and I made some wonderful friends. It may be something that helps others. Thanks again for your wonderful blog! Love to Jack the superhero!

THAT Kinda Girl said...

I know you wrote this a long time ago, but I wanted to let you know it's still touching people. I am the new mom of a 26 weeker. Teagan was born three weeks ago, and I'm just beginning to navigate life in the NICU, and being the mom of a micro-preemie. I know I will need support from other moms who have been through this so I just started looking for blogs and some form of a community. I'm so incredibly grateful for my son; he is God's blessing to me... But I also know I have no idea where my life is headed next. I'm scared. I'm overwhelmed. I've never been a mom (though I desperately wanted to be), instead I've always just been an independent, determined professional woman. I know having Teagan will change so many aspects of my life...and right now, I don't even know what those are. I'm thankful I found your blog and am going to go back and read other posts. I just wanted to say "Thank you" from an overwhelmed mom looking for some help and those who understand.

Jessi said...


Thank you so much for taking the time to comment on this post! In the shuffle of life, I had forgotten I wrote it. It is interesting reading it now, with these additional years passing. So glad you found it helpful. And thanks for sharing your story! I love hearing about Teagan. Since you are just beginning your NICU journey, I want you to know you can always email me if you have any questions or just want to chat. This is the hardest thing you will probably go through, so just know I care and am thinking of you!

Jessi said...


I love how small of a world it is :) Thanks for your comment. I LOVE your advice. I have found my morning walks to be such a good stress relief. Hope you are and your triplets (!!) are well!