Stella a Week Ago
Posted by Auntie Juju (Julia Gonsalves) on Nov 15, 2011
Stella now isn't always visibly happy to see me, or even notices I'm there. Sometimes I am standing in her peripheral vision and she calls her version of my name like she has no idea I'm there. Stella has trouble seeing now, some days her pupils are so big there is just a ring of blue, and sometimes they are just tiny dots in a big blue puddle. Stella's smile is still explosive and arrives when you least expect it, when I am at my most tired and least funny, when the entertainer in me is packing up and putting everything away. Stella now asks for food she doesn't want, wants to grip sticky lollipops that carry pieces of lucy and the couch and cheetos cheese popcorn. Stella now asks for a present each time someone leaves her house (and it truly is stella's house), 5 and 1 presents to be precise. I never commit, say I'll try but I don't have any money, I'm in overdraft. She says ok but maybe its why she will sit on my lap with much less frequency than a few weeks ago. The only gifts I pack are gentleness and patient attention for her, leftovers from how I was before her diagnosis. I think our nearly 2 days alone during the births of sam and gunga mark the pinnacle of our closeness and I am rolling down a hill now on a long string firmly fixed to her curled up little toes, connected forever but never to be so close again. Stella now will take walks in the ergo sometimes. I took her last weekend, talked about how beautiful the sunset was until I realised she'd fallen asleep. I saw the little blue veins in her face behind her pale thin skin in the context of fading daylight and it was peaceful that time, the feeling in me. I wanted to walk with her for days, her special blanket wrapped around us both like a housecoat. I wanted to keep her head under my chin.
Stella now goes in waves. She wanted to crawl yesterday and didn't care that she couldn't really. She still wants to have Tea parties with fred but can't sustain a storyline beyond drinking and pouring. She wants a thousand things at arms reach and can't balance them all, she refuses to acknowledge the limits of mish's lap and the sloppy couch cushions.
Stella now was stella a week ago, and she changes daily, arrives and leaves our lives in steps both forward and backward, morning and night, and we measure in smiles, measure in silence, measure in wait.
Comments (14)
Marg Baldwin:
Nov 17, 2011 at 01:02 AM
Such a sweet little pumpkin!everything that you write brings back vivid memories of my Dana who passed away Nov. 20th 1982. I know what it is like wondering and waiting for what is to come. it breaks my heart toknow that you are going thru what we did. The day she died was like any other, we had upped her morphine and I think that played a part in her quality of breathing. She just closed her eyes and went to heaven. It was a very peaceful passing for her.
you are all in my heart.
Dawn:
Nov 16, 2011 at 10:23 PM
I often want to comment but I'm always looking for the right thing to say. I guess there is no right thing to say! I wish I could take away all the hurt Stella's illness has caused her and her family. I try hard to understand why things like this happen to children. I have two boys one 18 years and the other 18 months and I'm terrified something awful will happen. I cry often reading Stella's blog. Your new baby Sam is just beautiful and I love the pictures of Stella and Sam together, they are perfect.
Sending love and light
Nameste
Shauna MacKenzie:
Nov 16, 2011 at 04:36 PM
Although I have two boys of my own, I love my nieces as if they were my own daughters. Family is forever! It's wonderful that you had a few days of alone time with Stella during the births of her baby brother and cousin. It may not have been a long period of time, but time shouldn't be measured in length, but in quality. Ride each wave of change with her and your family, adapt as she is adapting. And cherish every single moment. Hugs to you all!
Tammy Bailey:
Nov 16, 2011 at 02:28 AM
I've just read today's entry. What a beautiful, blessed little Angel that He has entrusted to your family. She is teaching everyone whose life she touches, great things and great wisdom. She is so lucky to have such loving family to walk through this with her. Prayers and blessings always.....
Andria Christopher:
Nov 15, 2011 at 11:36 PM
xoxo
Brooke:
Nov 15, 2011 at 11:01 PM
I have been reading for a while but don't know that I've ever commented. I am always in awe of the amazing family Stella is blessed with. Amazing mommies but also an amazing extended family. And how blessed you all are by Stella. Who by the way, has to be one of the most beautiful children on earth.
Tricia-Leigh:
Nov 15, 2011 at 08:41 PM
I once commented how special Stella's Mommies are, but the raw emotion in this post reminded me how special all of you are. As a mommy to two little girls and an aunt to two more, I can only imagine the painful journey your whole family is on. Once again, thank you for sharing this little Angel with all of us. I cry for you all. I may never know Stella, but I do carry a little of her in my heart. I think of you always.
Ida:
Nov 15, 2011 at 08:17 PM
Julia,
Thank you for the update. I come to this site everyday to read about your beautiful niece. I too, have a 2.5 yr. old niece and I love her as if she is my own daughter, just the way you love Stella. This beautiful angel is truly a gift from God.
The stories here are beautiful and heartbreaking at the same time. Even though I am a stranger, Stella and her family are in my thoughts and prayers everyday. I wish so much that I can take the pain away, make Stella better and give her a big hug.
The one thing that I can do is continue to hold Stella in my heart (the tears just won't stop)and pray for her.....I wish I could do more....
Sue Hutton:
Nov 15, 2011 at 07:52 PM
Juju, Andrea...
Your writing opens my heart. Thank you for being the amazing spirits of hope you are. Love love love. Suze and Kai
Heather:
Nov 15, 2011 at 07:13 PM
Julia & Andrea...Thank you for updating us recently on Stella. I am so sorry for you. I have posted many times about my feelings as a Mother but I am also an Auntie. This is a special and unique bond in itself. The love that you have for Stella is evident. Being an aunt is like having more kids that just don't live with you (and you can spoil them and then give them back to their parents). I can only guess how all of you are feeling right now as every day is filled with uncertainty. Stella is never far from my heart and my mind as I wonder what kind of day it was today. Sending Stella and you all my love today and everyday as I hold my breath.
Go to Comment Page 1 2