For the first several years after my son’s death I focused heavily on keeping his memory alive. I spoke of him every chance I was given and I did a tremendous amount of charity work in his memory. I worked with several hospitals on how to make the NICU experience better for parents, and educated their providers on what a family needs when the time to say goodbye to their baby has come. A passion for always keeping him at the top of my mind has driven me to continue with these efforts through almost eight years.In that time life has changed tremendously.
I have continued to raise his twin brother, and gone on to have two more healthy, singleton daughters. I found a job that I look forward to going to every day and have accomplished things professionally that I am very proud of.
As my living children have grown, life has become a constant battle of balancing doing it all and knowing when I to stop. I have had the opportunity to coach my eldest daughter in the sport that I loved growing up, and I’ve watched my twinless twin develop a great passion for learning. My youngest daughter is now 18 months and I look forward to seeing her grow as she learns whom she is.
From the outside looking in, life has flourished.
During this last year or so I have struggled with my journey in grieving. I have taken steps backward, wondered how to balance so much pain and so much happiness, and am seeing a counselor to help me work through the extreme happiness and sadness I feel on a daily basis.
During my time in therapy, I believe that I have found something new to work towards: establishing boundaries.
For so long I needed to speak of my son and I needed to do all I could to keep him in my every moment. My heart was so broken and it was the only thing I knew what to do. I created a blog, told my story, and worked hard to make my son’s life matter to health professionals.
Over the course of my last year of struggle, my need to speak of him has changed. I feel a desire to protect his story and only share with those who are close to me. And even then, only rarely. When I do speak of him and what we went through in NICU, I can no longer do so without breaking down. Speaking of my journey out loud no longer brings me strength.
Moments of his life remained cloudy for a long time. In the beginning I only saw the love we had for him, and the desire his nurses and doctors had to keep him alive. Those same memories now bring a realization of all we put him through; of all of the pain he experienced. At the time, his death seemed his destiny, and it was a peaceful decision for us. I now worry we made that decision too late and those last few weeks of his life were misery. But we had so much hope, and we thought we were saving his life. I now know we were simply prolonging it.
It took seven years to work through the fog of his death, and now that those moments are no longer clouded, I can clearly see all of the pain.
This is why I need boundaries. I need to speak of him only on my terms now. I need to guard my heart.
I have been at several social events lately where his death has been brought up to me by others. There was a time where this would have given me comfort – knowing that others remembered him.
It no longer comforts me. It now brings me back to a very painful place.
My journey through grief is constantly changing, which something I did not think would hold true for so long. I have longed for a constant pace, which I may have to accept that it will never come. The waves will be relentless. Times will be easier, and in turn, times will become rough again.
Right now it’s incredibly painful and by establishing those boundaries I feel like I may be able to work through the pain better.
I’m not sure what that means for the charity work I have so loved. I know it means stepping back and giving myself time to heal. But I honestly don’t know how to do that, and I know that complete healing will not happen this side of Heaven. But I can work towards a peace that continues to evade me. I can be a little selfish, and I think I deserve it.