Parents of Preemies Day

As originally posted on my blog, Joseph at Home (http://josephathome.blogspot.com/2014/05/parents-of-preemies-day.html)

Parents of Preemies Day

 
Our first family photo
 

Today is Parents of Preemies Day - a day to recognize the courage and strength of preemie parents. We were thrust into the preemie parent world in the fall of 2009 when our twin boys, Joseph and Campbell, were born at 24 weeks gestation. The fear, the worry, the unknown, the grief, the uncertainty that plagued us that day is a feeling that will stay with me forever. Would our babies survive? If they did, would they have a quality of life? What would that life look like? Would they be able to walk and talk? Would they die? How could we live if they did? Oh, the questions that we asked that day.

Campbell died after 23 days of life. I never thought I would be in the "parent of a child that died" club but I am. That 'club' makes people very uneasy. They often don't know what to say to you. Their demeanor often changes when they find out I have a child that died. I think people assume you are supposed to be a bubbly mess of tears all the time. Do I feel like that some days? Sure. As we've said since he died, "you learn to get through it, but you never get over it."

Do I miss him every day? Absolutely. I am so grateful that we had 23 days with him. The more that time goes by since he died, I realize more and more how blessed we are to have had that amount of time with him. So many parents don't get one day, one hour, or even one minute. We had 23 days. There are parents who would give anything for 23 days. Do I wish we had a lifetime with him? Of course, but I always try to be thankful for what time God did allow us to have with him.

Joseph spent 228 days in the Neonatal ICU before coming home. Seven and a half months of our baby living in the hospital before ever coming home. Months of worry and anguish. Months of living second to second. Moments of life and death. Months of tears and laughter as we watched him grow and saw his personality emerge. The joy and happiness of finally bringing him home.

Being a preemie parent is tough. Some days it seems impossible. There are many days I cry out of sheer exhaustion. I never saw myself as a stay at home mom. I envisioned myself continuing to work when we had children. After Joseph was rehospitalized five times in the first year he was home, there was absolutely no option but for me to put my career on hold to care for Joseph. Caring for him is more than a full time job. The doctors appointments, the therapies, dealing with insurance, the sleepless nights (I don't remember the last time we slept through the night), the advocacy, ordering medical supplies, educating myself of new treatments and questions for doctors, finding the right school, doing everything in our power to keep him healthy. I could go on for days.

Would I trade this in to have my career back? Absolutely not. I can't imagine doing anything else. Being the parent of a preemie is the most rewarding job I will ever have. I have witnessed a miracle happen in Joseph. Medically, there are many reasons he shouldn't be alive. But he is - and he is thriving. He is walking, he is talking, he can eat, he is happy, he LOVES life. He does so many things that doctors virtually said were impossible.

Joseph has taught me so much about life. Some things just aren't important anymore. Living every second in life to the fullest is important. Watching Joseph work hard, seeing his determination, seeing his drive to succeed, seeing his willingness to learn - they are such important lessons I have learned from him.

Is life a little tougher for Joseph because of his prematurity? Yes. Does it make me mad? Absolutely. Does it make him mad? He doesn't know any different - and that, I have to remember. If he's not mad, I shouldn't be mad.

Holding the title of 'preemie parent' is one I never thought I would have. But I do. And I'm proud of it. Really proud of it.

 

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