Life After NICU

Sometimes You Have to Ask for What You Want

I think it’s good to put what you want out into the universe every once in awhile. For me it brings much-needed focus, gives me a little accountability, and it helps me define exactly what it is that I want. I believe when all that is going in your favor only good things can happen.

When James was in the NICU I journaled a lot and put a lot out into the universe. At first I wanted to write everything down to help me process what was happening. It was all new, incredibly stressful, and very overwhelming. Writing it out helped me make sense of it all, as much as that’s possible in those kind of circumstances. Then there were incredible things happening that I didn’t want to forget, like the day he first opened his eyes, the day I held him in my hands, the first time I changed a diaper. Things that were supposed to be routine became huge milestones. Then I continued writing, and still do, as a form of therapy for myself. Writing out the painful experiences can bring them closure, and helps to take the power away from my thoughts. Writing out the joyful experiences helps me to capture that emotion so strongly within myself. The NICU was full of pain and fear, but it was also full of amazingly beautiful experiences that I’m forever grateful for, and writing it out helped me to recognize that.

As I journaled in the NICU, the only acceptable outcome of my writing was for James to be ok at the end of day. I wrote with that in mind, and fully believed it would be true. I was able to keep that focus most of the time, but there was one week in particular where I let fear take over. I thought about all the horrible what if’s that might happen, and there were many. It was an intensely draining week full of tears. My husband helped to keep me focused after that. When I brought up what if’s and fears he quickly reminded me that the only acceptable outcome was that James would be ok. I’m thankful for the resolve he had, and the feelings of peace we felt as a result.

kennedy-krieger-instituteThe last few weeks have been filled with a lot of uncertainty. James has been sick, other than a day here or there, for about three weeks. There were days he completely refused to eat and drank very little pediasure. As recently as last weekend we were having discussions with the doctor about placing an NG tube just to help get him through and keep him hydrated. Days like that fill me with questions about our upcoming trip to Baltimore. I’m certain they can help, but what form will that help take? Will we be leaving with an NG tube? Will we be coming back to Dallas to schedule g-tube surgery? Will we return to Baltimore for in-patient or out-patient therapy? Will we have a plan we can implement at home? I don’t know the answers to those questions but I do know what I want, and putting what I want out there makes me feel more confident that we’ll achieve it.

I want a plan. I want to know what the next step is in getting James to gain weight. I’m open to whatever that plan may be, but I want a plan. I’m finished with uncertainty and the wait and see approach. It definitely had its place, but the time has come for the next step. That’s what I want from The Kennedy Krieger Institute. It seems so simple; I just want a plan. I believe I will have a plan in a few short weeks, and that gives me the ability to take a deep breath and keep going.

James and I begin our journey today. I’m nervous and a little anxious about the coming weeks, but I feel certain we are headed in the right direction.

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2 thoughts on “Sometimes You Have to Ask for What You Want

  1. Keep your head up, your an inspiration to ALOT of moms and I look forward to hearing about this adventure…to see if it is something that can help Caroline. We both wish you both luck in that you get some answers and a plan;)

    • Thank you so much Kira! Such encouraging words, I appreciate that so much. I’m nervous, but really looking forward to getting things moving for James and his feeding. I will let you know how it goes!

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