Remembering Bella

Today is the fourth anniversary of losing our beautiful Bella to Walker-Warburg Syndrome. Here is a video that was featured in the 2011 Neuro Film Festival “Remembering Bella.”

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Lessons Learned from Loss

Welcome to the January Carnival of Natural Parenting: Learning from children

This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have shared the many lessons their children have taught them. Please read to the end to find a list of links to the other carnival participants.

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I lost my sweet daughter, Bella, when she was sixteen months old. She was born with a very rare genetic condition called Walker Warburg Syndrome. She had hydrocephalus, Microphthalmia (blindness), had to be fed through a feeding tube and had Muscular Dystrophy and that’s just to name a few characteristics of the disease. She was born in January; she’d be five this month. Maybe because five is such a landmark age, I seem to be having a harder time this year than in the past couple years. I think about how she would be starting Kindergarten and how her personality would be blooming.
Having a special needs child really teaches you so much about patience and about not taking things for granted. I realize now how much I just took for granted with my oldest, Big Z. First steps and first smiles are so exciting, and with Bella, we were just desperate for her to lift her arm or turn her head. Over time we realized for her, these steps were never going to happen. So with our newest little one, Lil’ Z, I want to soak up every moment because time goes by so quickly. January is also the month when Lil’ Z, was born. Perhaps this adds to the bitter sweetness of this month?
From losing my daughter Bella I’ve learned that I had to become stronger than I ever wanted to be. I never wanted to survive the death of my sweet baby girl. I really thought it was something that would destroy me. Living with a special needs child is a lot of work, requiring some heavy duty support systems. I look back at all of the appointments, work, exhaustion and I have no idea how I did it all.  I learned not to depend on only myself as it became quite apparent I also needed to really learn how to depend on something more. It was certainly a lesson in faith.
In hindsight, another thing I now understand is that you can never take enough pictures and videos of your kids. I thought I took a lot of pictures of Bella. In fact, we took pictures of her every day during her long stay in the NICU. We had friends and family constantly requesting updates, so my DH updated a website every day with new pictures. However, I still wish I had more. I am so thankful that we had family photos taken professionally two weeks before she died. Of course, we had no idea at the time that it would work out that way, but I cherish those pictures so dearly. We didn’t take many videos of her because she didn’t move or “do” anything much. I kick myself now and wish we had captured just a little more of her. The two small clips of video we took have become so precious.
I have also come to realize that memories do fade. Oh, how I wish that wasn’t the case! Right after Bella died I could remember every little fat roll and mark on her little body, now three years later I really struggle to hold onto those small details about her. Perhaps that is the only way that the pain doesn’t eat us alive, if we remembered it all so clearly maybe we wouldn’t be able to go on. Our family works hard to talk about Bella a lot to keep her memory alive. We have a special box of things that remind us of her that we get out and then share Bella stories together.  She touched so many people’s lives in her brief stay on this Earth. Sometimes I miss her so much I feel like this giant hole of emptiness inside me is leaving me to be nothing more than an empty shell. Fortunately, I have my two other little munchkins that give me plenty of reasons for getting up the next day and searching for what joy it will bring.
Finally, I’ve learned that there are worse things in life than death. While death is pretty high on the list of terrible things, I strongly feel that in some situations death can be a blessing. I would give almost anything to hold my sweet Bella in my arms again.  For the longest time after she died, my arms ached for just wanting to hold her in them. While I know Bella does not have to suffer and struggle anymore, it’s us, her family that are left to feel sad without her. So I guess that’s what else I’ve learned, I’ve learned to have hope. Hope that one day I will be reunited with my sweet Bella again and my whole family will be together as one.

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Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit Hobo Mama and Code Name: Mama to find out how you can participate in the next Carnival of Natural Parenting!

Please take time to read the submissions by the other carnival participants:

(This list will be live and updated by afternoon January 11 with all the carnival links.)