Friday, April 14, 2017


My oldest daughter was born to be a big sister.  I mean this in the sense that she has this caring and special soul that was meant to be the oldest of many siblings.  Sam and I have been fortunate to help her fulfil that mission of hers; although the responsibilities she has taken on at an early age were not exactly the ones I would have envisioned when she made us parents.  She absolutely loves to dote on her brother and sisters, she loves to be in charge, she loves to interact with them, and she loves to help them explore the world in whatever is the best way for each of them.  Watching her with Sonzee has been the most touching, as they truly have a unique and special bond, however, I would be lying if I did not feel like she has been gipped in a small sense.

When she became a big sister for the first time she had barely turned 18 months old.  She never handled the transition with any negativity and loved to hold her brother and play with him.  I really do not think she remembers or really knows her life without him in it, and so they have this special tag team/super hero bond with one another.  They fight like cats and dogs and the next second are hugging and making up.  By the time our 3rd came into the world, she was a few months into being a 3-year-old.  Again, she welcomed her sister with love, wanted to hold her, and pick out her clothing and love on her, but being that she was 3, she was still too young to want to pick her up and drag her around the house like a doll.  Then, we had Sonzee and she had just turned 5.  She could not be more excited that she now had another sister, one who she could control like a little puppet, and one that she wanted to be carrying around the house like a doll. ** 

As a 5-year-old she wanted more out of her big sister roll, and she wanted to be like "all the other big sisters", like all her friends she got to see being big sisters.  She wanted to be able to just pick up her little sister off the floor and carry her around the house and plop her down in her room to play house.  She wanted to crawl around on all fours with her and let  her go tell her where she wanted to go.  As she got older she wanted to hold her hand as she started to take her first steps and lead her around the house (who knows-maybe that will happen one day down the road).  There are so many big sister things that she does with Sonzee, but it is just not the same.  

Over the first two days of the Passover holiday, we went to our friends in a nearby city.  Their youngest daughter is 14 months and is in that cowgirl bended knee, unsteady but excited phase of mastering walking.  For two days, our oldest held her hand and helped her around the house.  For two days when their daughter climbed into a stroller or toy car and could not get out, our oldest was right there to help her.  These two girls were in heaven with one another.  It made me so happy that a need was being filled for both of them.  However, it broke my heart that now at 7, my oldest does not have a healthy baby sibling.  There are always tubes on Sonzee, and there is so much support needed to lift her.  Our oldest while extremely strong and eager is unable to do more than straddle around her and lift her up for a hug.  While she sisters her in an entirely amazing manner, as a mother, it just crushes me that she cannot be like most of her big sister friends.  

I know deep down Sonzee was meant to be her little sister, and they were meant to be "twin girls", but I do wish for my oldest that Sonzee would give her a little bit more of that normal big sister role.

**Even if Sonzee didn't have CDKL5, I totally would not have allowed her to carry her the way she wanted-just saying

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