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.)

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14 thoughts on “Lessons Learned from Loss”

  1. I’m not exactly sure what to say because how can a person ever really say the right thing to a parent who has lost a child. But I wanted to acknowledge your courage to put this out there. I imagine it’s a pretty emotional thing to do. Hugs to you Erica.

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  2. Oh my! This is the first carnival post I’ve read this month, and it already has me in tears. You are so strong and so … I’m not really sure what the word is? I agree on the pictures, and on how the memories fade – I sometimes just watch through old photos, simply to remember the ‘baby’ days. I cannot imagine how it feels. I hope your healing continues and that you and your family are deeply blessed.

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  3. wow. props for sharing your story. i think this is a lesson to all of us: more honesty, more loving what you’ve got. Bella was fortunate to have such a special mama.

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  4. What a sad and beautiful post. I’m so sorry for your loss of sweet Bella. Thank you for sharing the lessons she taught you — they’re both painful and inspiring. It makes me want to hug my loved ones close and appreciate each moment we do have.

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  5. Ok, I’m not usually one for being lost for words, but this post has just emptied our my heart of compassion and love for you and your family. I don’t know what to say except thank you for sharing such a raw and honest post …

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  6. I was crying in seconds of reading this. But thank you so much for posting it. I am so sorry for you loss. It is so brave of you to share the story and lesson with us. One could never be able to know how you feel without being in your shoes, but can only imagine that this took a wonderful and strong heart to write. Thank you so much for making me thankful for my son. It is a beatiful gift and lesson.

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  7. Thank you so much for sharing! Death is such a strong teacher. I lost my father almost 11 years ago, and it is amazing how time removes those strong memories slowly. I agree that it is because we couldn’t go on with our daily lives if we could still remember clearly those that are taken from us. At the same time, I also feel more at peace about moving on myself some day, after his going.It is wonderful that you have been able to process your grief in a way that allowed you to hold your other children dearer and to give them more of yourself.Thanks again for the beautiful post!

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  8. I’m so glad you included a picture of Bella with her big sister. I kept looking at it while reading your post and taking in her sweet face. Thank you for sharing your story. My heart aches for your loss, and I send you much lovingkindess and wishes for continued love and healing…Blessings,Stacy

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  9. I am so sorry for your loss. It’s true that memories do fade. I lost a good friend five years ago, and now all those little details are gone… smells, smiles, little movements someone makes. I can’t imagine your pain, and I am so sorry. Thank you for sharing your story.Olivia

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  10. Oh, Erica! We lost our third. He wasn’t here for as long as Bella was, but it still tore me apart. I’m so glad you got to be with Bella for her little lifetime and so sad you had to endure her loss. I know how that loss feels and there really aren’t words to say. Just a hug and a shoulder to cry the tears on is needed. I wish I could give you a hug and we could both cry for our lost little darlings. I can’t really do that here in cyber space, but know my heart bows with yours this January.

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