Dalia is in the operating room right now. When she comes out of anesthesia her world will have changed. Her tongue will no longer poke through her mouth where her left upper lip would be; no longer be able to slither up into her nose. Her hard palate - the front part of her palate behind her gums, will be closed.
When she is in a new setting, or around people whom she has never seen, she is quiet, observant, curious, attentive, trusting. When she is at home or when she’s grown accustomed to a new person or place… watch out! The panther awakens and roars. She talks. By this I mean she vocalizes a lot of sounds and expressions. She is using the language that she is able to make with the back of her throat (gutteral sounds – hard “g”, “ha”, “ch” like Hebrew “chai”, or “ya.” She cannot make the sounds that we make by putting our lips together or putting our tongue to the roof of her mouth.
After today, she will start learning how to make these sounds. I will be patient for her even if she cannot be patient. I think she’ll find a way.
Her sounds are beautiful. Since coming home to Vermont 10 days ago, she has started saying new words. When she first wakes up, sits her little body and big head up and says, softly, “Hi.” Then a little louder, “Gah Gye.” She has lerarned “Uh-oh” – as in the time I was changing her diaper, had taken dirty diaper off and I heard “Uh-oh” to find her peeing on the changing table. Way to use your words, Dalia! Last night when Tal was playing peek a boo with her she said “hello.”
Friends and family have asked how she is doing. They/you do not know because, well, I have barely had enough time to keep her bottles clean! I have even more admiration and respect for all of the parents and caretakers out there for raising their kids after doing it for just 3+ weeks.
She is doing so well. We are so fortunate to have had this little beautiful human fall into our lives. Ok, so it took four years and a lot of anguish for us. But, still, we are so fortunate. She is just the right girl for us. She is happy, active, playful, funny, curious, and many have said “very smart.” Coordinated, determined. Loves her cat and dog, watches and laughs with her big brothers.
I brought her to the North Branch School play on Friday night. (NBS students write an original play every year and perform it for 2 nights. A must see!! Always funny, insightful, full of comedy, hope, poetry, questions and truth). SO many people came up to Dalia to say hello, to welcome her home. I felt so much love and goodwill, so many watchful eyes and open arms, so many swift tennis-shoed feet ready to chase after her and catch her when she needs to come back home. She had conversations with Eric Warren (NBS Science Teacher) and a few alums that seem to involve some signing. It sure seems like she may have been taught some sign language. She held her arms up for Michael Seligmann to hold her. She pointed at the stage and said “Gah GAH!” when the students were on stage, especially her brothers. She clapped her hands spontaneously. She danced around with happy Grandma Ginger.
So, in short, she is a joy.
This morning, I “woke up” at 4:30. I probably only slept about 3 hours, having had 2 unique dreams about my alarm clock either not working or going off late. We had laid her down asleep last night at 10 PM and by midnight she had managed to flop and flail herself so that her body was parallel to the pillows, thereby leaving no room for me to lie down fully on the bed. OK, fine. Just get through the night, please, don’t wake up and want your bottle because you can’t have liquids after midnight… I woke her up at 5, changed her diaper, put on her pink Pumas (thanks Kelly and Ruby) and got in the car in the dark and rain. No crying, no whining. Just curious. Slept on the hour ride to Bulrington. Brought her into the hospital and she started clapping. While we sat in the waiting room to be registered, I pulled out Elephant, one of the stuffed animals we had sent to her in December. She hugged Elephant and offered him up to the people sitting on either side. She offered her book to the intake person. Our friend, Gretchen, an RN at Fletcher who is now an administrator for the OR department, and mother of Calder’s teammate, Tyler, came in early to see us and make sure we were OK. I cried when I saw her. I cried last night when Tal told me she would be here. Dalia took a liking to Gretch right away. They played with the little mouse in a box, played with the toys outside her preparation room. Dr. Laub came by, Dr. Chris Yen, the resident Anesthesiologist, Dr. Joe Kautz, the attending anesthesiologist, Karen the nurse. A social worker who blew bubbles. They checked her out, asked me lots of questions. Everyone was available and nice.
They let me go into the operating room with he even though I had told them I have a tendency to faint. I put on my white exterminator suit thing, a blue fabric hat and blue shoe covers. Dalia did not approve of my get-up at all. She let them put a bracelet on her – no problem. She sat on my lap and faced Dr. Yen, who put a mask over her nose and mouth. I held her as she breathed in and out, and went to sleep.
I think of my nephew, Peter, who had Leukemia and has Down Syndrome. All the hellish procedures and after-effects he went through, so bravely. Peter - you inspire me! I hope that Dalia will follow your brave path.
Soon she will be out of surgery. Tal will be here after school to make his little girl feel good.
I sure wish I could talk to my Dad right now.
Thank you all for your words of love and support. We feel it.
I am updating the blog with photos as I can.
Love, and Happy Passover,
DIna
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