Grown Up Feelings

It wasn't until I became a mother that I experienced the phenomenon of truly dichotomous feelings. When I was young, I either liked something or I didn't. Someone either made me feel happy or sad. Life was easier then.

It began with Patricia. Having her in my life, carrying her for seven months and feeling her wiggle and dance inside me, experiencing the joy of impending parenthood with my husband. These things brought me more joy than I could ever imagine. When she died, my world collapsed and a gaping hole was left in my heart. Now, when I think of my sweet Patricia, I feel both incredible joy and intense pain simultaneously. With great love comes great grief.

I feel similarly with Anna. She is absolutely the light of my life and her smile makes the whole world better! It is true also that some of the events in her life have caused me great heartache, and my fear for her future is ever-pressing as each month goes by and she falls further behind. So much of this is normal parenting and I am aware of that. What parent doesn't fear for their child's future? And what parent doesn't want to snuggle all day with their infant one minute and be as far away as possible the next? (Thanks a lot, teeth!) However, I do equate special needs parenting to parenting on steroids. Every feeling is intensified, and only other special needs parents can truly understand.

I am trying to embrace all of these feelings and accept that adults live their lives not in black and white but in shades of grey. Some days, I am successful and can end the day on a positive note, feeling grateful for my family. Other days, I can't handle the conflicting feelings and the sadness and frustration wins. I spend the hours wallowing in pity, wondering why I have had to endure such tragedy and heartache and wishing things could just be better. I can't find the words to wrap this post up in a bow. Can you guess which type of day today is?

I Wish It Were 2013

On January 8th, Anna will turn one year old. I would be lying if I said I am excited for her birthday. Honestly, it is the 4th worst day of my life. She was not supposed to be born in January, she was supposed to be born in April. She was not supposed to have brain bleeds. She is supposed to be able to roll, sit up, hold a sippy cup with both hands, and maybe even crawl. But she cannot do these things, and it is all because of January 8th.

We had a nice Christmas with our family and Anna was spoiled with gifts and attention. But I wish we just celebrated Christmas 2012. I wish today were January 6, 2013 and I was 26 weeks pregnant with our perfect little Anna. I wish most of 2013 had not happened. No ventilators, IVs, feeding tubes, MRIs, surgeries, therapies, etc. etc. etc. I hate what she and we have had to endure.

Of course I am thankful. I am SO thankful for her beautiful smile and laugh, and for the amazing progress she has made given what we were told in the early days after her bleeds were discovered when were offered the possibility of taking her off of the ventilator. I am thankful for the support of my family and friends and the entirety of Anna's care team. However, being thankful does not mean I have to embrace every part of our journey. I certainly don't spend every minute feeling sadness and regret, but on days leading up to major milestones, I am flooded with these feelings.

We will honor Anna's first birthday with a small family gathering. I am not ready to celebrate, but we will honor the day we met Anna just as we do the day we met Patricia. I hope someday I will be able to celebrate.

No doubt Anna will enjoy her cake as she did her Christmas muffin!