Friday, May 6, 2011

Never the same...

As I write, my husband is off to a family gathering. It is the birthday of his grandmother. Everyone in my husband's clan will be there to celebrate their grandmother's 90th birthday i believe. Well, everyone except myself, and Sabina, and her older sister, who decided to stay home and keep me company.

Ever since Sabina was diagnosed with mitochondrial respiratory chain disorder (mito from now on), family gatherings especially during Christmas and New Year's and family birthdays in restaurants and public places, find our family incomplete. Because Sabina is at risk in large crowds that may have someone coughing and with colds, my husband prefers Sabina to stay home where she is safe from contracting a virus. (which to a person with Mito, could be very detrimental) (on a side note, Sabina had to be confined last year for coughs that led to an infection) (So malls and crowded public places are off limits.) Sabina also gets tired easily (part of Mito), and so bringing her to celebrations that can drag on for hours is also not good for her.

So while everyone is taking family photos and opening presents and blowing candles, enjoy a great meal in a popular restaurant, and going "malling" together or what have you, Sabina is never around. She is not in family photos that show all the grandkids or cousins from A to Z. She is not sitting with us in the table for big family dinners. She is not with us as we countdown the New Year or greet everyone Merry Christmas as the clock strikes 12. Every special occasion Sabina is absent. Now, don't get me wrong. There are immediate family dinners at our home, or my grandma's house, or my parents' place or at my mother in law's or inlaws, where we get to bring Sabina. However, special gatherings where the whole clan in present, such as the holidays or big birthday parties, are not celebrations where Sabina is part of. We leave her at home with my mom or a capable adult friend to watch over incase of emergencies.

During these times, my heart bleeds inside. I see the families of my inlaws or my cousins or relatives and they are complete. They have numerous family photos together. We don't. We take our pictures at home before we head out. Last Christmas eve, my eldest daughter voices out what is inside my heart. She says -- "I miss Sabina. I wish she was here."

For an 8 year old to feel and recognize the absence of her sister is heartbreaking. Despite the revelry of gifts and excitement, my daughter knew that something, no someone, was missing. And occasions like tonight, she is missing again. Altho I chose to stay home now to be with her.

Its been this way for over 2 years, and I think in someway, relatives have gotten used to not seeing Sabina during these large family celebrations. They ask about her sometimes, but to be honest, i think maybe some have actually forgotten she exists. My husband has family members who have probably seen Sabina only once or twice. They only get to see her from photos I post on Facebook.

Isn't that sad? Yet, its our reality. So now, the way I view celebrations is never the same. Because someone will always be missing. The absence of Sabina's presence leaves a very big hole in my mother's heart. So how can I celebrate fully when I know my baby girl is not with us and is home alone?? I know because of her disease, she probably doesn't understand what's going on. But I do. And I feel very very incomplete.
So, when we are a complete family, I am overjoyed. Whether its a simple thing like a walk in the park, or a quick dinner with immediate family in someone's respective home, I am thrilled we are complete. All of us together just as it should it be.

But as I end this entry for today, feeling a little sad, I looked for a verse to cheer me up and saw this:
Psalm 43:5 "Why are you so downcast oh my soul? Why so disturbed within me? Put your hope in God, for I will yet praise Him, my Savior and my God."


  1. Holding your hand, sister. I know exactly how you feel. It took years for me to get Abby in my pics too...and I have inlaws that come visit her and see Nico and Emma and act like Abby doesnt exsist. So it feels like the wind gets knocked of me when I see them with no interaction with her. Id rather have them not come over than that blatant display to w/c emma and nico gets confused too because they are very protective of Abby. But we do what we can to protect our girls. yesterday i was sick but instead of resting, i did chores. when everything was done...the kids tucked in, the house clean (I find myself rearranging stuff all the time )and i was alone in my bed (george was out too) I just felt overwhelmed. With---everything. and cried for like an hour. After a good cry, it felt better. Not all ok, just...bittersweet.sigh

  2. hey candy! chie here. i feel your hurt. hang in there. while my son doesn't have some of the limitations that sabina has, he certainly is not in a lot of family photos. he doesn't like having his photo taken and gets stressed out in big crowds. take heart. you are not alone in this. sabina knows she's loved- whether she's in the photos or not...whether she's in gatherings or not. you know her face well and she knows yours :) love to your girls!