Aero & Elvis

I am new to Elmo. I love Elmo. Aero loves Elmo.
Maybe, one day, I will grit my teeth and my eyes will spontaneously hemorrhage when I hear that telltale Elmo chuckle. But, for right now, I am basking in the radiant smiles and giggles that Aero bestows whenever Elmo is around.

sins of the father, part 1

me, joe, dianne, dad, stinker

My father was a single parent, for the most part. He married Bonnie when I was 6, divorced less than 6 months later. He married Mary Ann when I was 8, divorced when I was 11. The time with Mary Ann is what I look to as the most idyllic of my childhood. Home from school, change into play clothes, have a homemade snack, play outside, either on the beach or in the woods, dinner together as family at the dinner table, change for bed, have a snack and sweet dreams. Oh, beautiful consistency and structure. This photo was taken during those halycon days.

My father had a gypsy soul and big heart. He was a career Navy man, his last post being stationed at Puget Sound Naval Shipyard, Bremerton, WA. He enlisted at age 17, retired at 37. His wander lust created a bit of a nomadic childhood for myself and my younger brother, Joe.

At age 8, without my father, he put my brother Joe and I on a plane to live with his parents in southwestern Pennsylvania, coal mining country , land of lush, rolling hills and rabid Steeler fans. To this day, I don't know why. I can't even recall feeling strange about it the move. It just was.  Just a few months later, he showed up, married to Mary Ann and with her daughter, Dianne. We all moved to Norfolk, VA and spent a summer in a house 4 blocks from the ocean and with a real life swamp in our backyard.  We moved back to Bremerton just 3 months later.

I became much more aware of my father as a person when he and Mary Ann split up. He was a gentle, giving soul in his day to day interactions with folks. Yet, I could feel a confused, torn and tormented man lurking beneath the surface. I was 11 years old when I started taking on my daddy's darkness. I began to feel the burden of carrying the emotional weight for our tiny family. 

At age 12, we were once again boarded on a plane bound for P.A. This time, I was mad. I had just hit my stride in junior high and I was loving every moment; pep rallies, basketball games, disco dances in the cafeteria and boys! Every time I talked with my dad on the phone, I begged him to let us come back. At the end of the school year, we flew west to Portland and stayed with a family we knew in Port Orchard. Four months later we took the a Trailways bus cross country, this time with our father. 

My father decided he needed his family's support. He was finding life difficult to navigate with the responsibility of raising teenage 2 kids. He spoke of aunts, uncles, cousins that would be able to help us out. Little did we understand the kind of help that was needed, required. 

Oops!

Totally forgot about posting! I was really wrapped up in doing some online research for therapeutic protocols for children with Down syndrome. Absolutely fascinating. A complete oversimplification of the science, but all the extra chromosomal material creates an overabundance of protein in the system which creates A LOT of oxidative stress on the body, especially cognition (brain development). So, the theory is that if you can arrest the deterioration through nutrition and supplementation of anti-oxidants, you can increase cognitive synapses. Lots more to study. The challenge is that doctors are not aware of all this research and the amazing quality of life that some very diligent moms have created for their kids by being really savvy and smart. Jeez, Moms rule! The doctors just think that that it is what it is. I say phooey on low expectations and not helping Aero realize his potential.

Sol's Visit

We visit 13 Coins Restaurant every time Sol comes to town (mostly for breakfast). On his last visit, it was March and Aero had been a resident at Swedish for over 2 months. I was so in the rabbit hole of having a baby in the hospital. Life for me was extremely stressful and myopic. I felt I was in a time warp vortex, never to escape the existence I was currently experiencing. When Sol mentioned that on his next visit Aero would be joining us at 13 Coins I did not believe his words.

Yet, here we are and Aero is feasting on knuckle sandwich. Aero is a very social eater. He wants whatever you are eating although he has not graduated from puree texture ('cept for those awesome cheese puffs). I fed him a bit from my plate, a little egg yolk and gravy. A waiter walked by and gave Aero a little head massage. He could not resist touching the pixie rocker do Mr. A was sporting that morn.

Aero's new tumble mat, a gift from Uncle Sol. The blanket on the floor was cutting down on his 'moves'. Aero is more of an observer. He seems mostly content dumping out the contents of the plastic bins and then chewing on them. In an effort to encourage more locomotion, we thought this slippy-slidy surface would help.

The entertainer.

Bed time stories?

Bro Love

It was so amazing to have Sol here. He was our first over night guest since Aero coming home. We are living an rather isolated existence because of Aero's feeding therapy and feeding schedule. It made things feel (sigh) a little normal, a little easier. I could exhale not feeling that I was the only one on baby watch. Aero so appreciated being held by Sol and spending time in his company. And maybe because I was a wee bit relaxed, Aero had a breakthrough in his feeding. He is taking breast milk from a spoon. Little by little, drop by drop adds up. It takes about 30 minutes to have him drink 20 ml (one feeding is generally 140 ml). Slow. Steady. Progress.

Happy 9th Month My Bubbage

Uncle Sol is here visiting us from New Hampshire and we are having a grand time. That's why the 2 days of very brief blog posts. Have so much to share and will do tomorrow. But, for right now, at this moment, please take a moment to say a big thank you for this precious love and his 9 months of existence on this earth and for blessing my life with so much incredible heart busting joy.

Best Day Ever!

Sorry for the tease but I am absolutely exhausted and I can't adequately describe what an awesome day this was for Aero. I will tomorrow.

Aero's First Food Love

This imp, baby of popeye'd forearms, mesmerizing blue eyes and giver of sweet as pie chunky monkey slobbery love kisses, is double fisting smart puffs in this photo.

The feeding therapist at Children's Hospital introduced them to him last week. She called them 'crunch and melt' food. I have not been able to pry them from his hands since.

They satisfy his need to 'CRUNCH' while not being threatening to his new found swallowing food skills as they turn to mush as soon as they mix with saliva.

Incidentally, we have discovered a new non-toxic super glue...smart puffs and Aero's saliva. Kind of tough to pry from kitchen floor once dried.