BFF

Joaquin already has a Best Friend Forever and her name is Jolie. They are cousins and are only 6 weeks apart. It's going to be so much fun watching these two grow up together and we know they will share a very special friendship.

Here are a few photos of us....Jennifer (my sister in law- yes we have the same name!) holding Joaquin and I'm holding Jolie, J & J head to head on the day they met (Jolie is only a few days old) and naptime for the two little ones in the same pack-n-play crib.

Nana

There is no denying that Nana and Joaquin have a very special bond. He lights up whenever he sees her and she is the only one that brings out his devilish side! He loves to try and "love bite" Nana- all over her face! He's like a little tiger when he's in her face. We are so fortunate to live so close to my parents and that he gets to see Nana and Grandpa almost every day. He goes through Nana withdrawl when she goes away on vacations.

Here's are few photos taken today with Joaquin and his favorite Nana!

Mild Case of Down Syndrome?

I thought I'd post the most commonly asked question even though I still don't have a clear cut answer for it. Friends, families and strangers always ask me if there are different degrees of Down syndrome- mild, moderate or severe. They'll ask me if there is such a thing as a mild case of Down syndrome. I think people are assuming that Joaquin has a more mild version of DS based on the fact that he was not diagnosed right away, the fact that sometime it's hard to "see" it in his face and the fact that for the most part he's on target developmentally.

Joaquin doesn't have a mild case of DS he just has Down syndrome. I'm really not sure how else to answer this question but it will be one of the first questions I ask next week when we visit Dr. Wardinsky, the lead doctor at the Down Syndrome Clinic at Alta Regional. This will be our first visit to a doctor who deals exclusively with children blessed with a little extra....a little extra chromosome.

There is no such thing as a mild case of Down syndrome- your genes either have three 21st chromosomes or they do not. But how that manifests itself will be different on each and every person and that person may have mild, moderate or severe symptoms. I saw it written somewhere online that it's similar to asking "Are you mildly pregnant?"...you are either pregnant or you're not. Maybe a good analogy is that no two pregnancies are the same.....sometimes you have insomnia, nausea and stretch marks and sometimes you only have weight gain and varicose veins or very few symptoms at all. With DS, no two children are the same, sometimes you have heart problems, typical facial characteristics and low muscle tone and sometimes you only have a few facial features, a little hearing loss, a mild strabismus or very few symptoms at all. One must also remember that the rest of Joaquin's genetic makeup, the rest of the 44 chromosomes have come from his parents so that's why he'll still resemble us and his siblings. He will also possess our strengths and our weaknesses much like our other children do. He will just have additional challenges based on how the Trisomy 21 affects his brain and his body.

Then there is the issue of how much control we have over his sensory stimulation in order to help his brain compensate for any injury caused by his Trisomy 21.....which we've written about in previous posts and is the main focus of the program we are doing with the Institutes as well as the therapy services provided through our Regional Center.

I will always welcome this question because I feel that this is one way that I can help education and advocate for my son and his peers. I hope to learn more every day about Down syndrome so I can share the most accurate information with those around me and increase the awareness. Just a few days ago, I felt compelled to put a Down Syndrome Awareness Ribbon magnet on the back of my car. I've never done anything like that before. Bring it on.....the questions, that is!

Someone to Watch Over Me

Here is an adorable photo of Mateo peering in at the baby in the crib. I think Joaquin was close to 3 months old and Mateo was finally warming up to having a baby brother. I love this photo.

Spidermania

Here is our family of spiders- The Red Spiderman is Diego, The Black Spiderman is Mateo and of course the spider is Joaquin. By the way, I'm truly afraid of spiders....huge case of arachnophobia! It's so ironic that I have a household of boys who are obsessed with them. Diego really wants me to dress up as Mary Jane on Halloween night and he wants Hector to be Peter Parker....we'll see!

Papa's Baby Boy

Looking Back

My Grandma Eleanor passed away earlier this year when Joaquin was about 6 weeks old. I had a very special relationship with my Grandma. She helped raise me as a child when my mom was working as a nurse to put my dad through law school. We even lived with Grandma for the first 3 years of my life in a house just down the street from where I currently live.

I remember getting a phone call from my mom a few days after Joaquin was born, those early morning calls that are always dreaded, that Grandma wasn't doing very well and was in the hospital in Truckee. I knew the moment I got that call that I was going to drive up there with Joaquin to make sure she had a chance to meet him. He was only a few days old but I wanted to see her immediately. Fortunately, Hector was home from work for the week so he stayed with Diego and Mateo so I could go with Joaquin and the rest of my family to see Grandma without the distraction of two little boys running around the hospital.

She had had a rough night so we weren't sure how lucid she would be when we saw her. Fortunately, on the drive up to Truckee, we heard that she was stable and would probably be released back home later that evening so I was able to relax a bit. I had taken special care to dress Joaquin in the softest powder blue baby gown and cap with a matching blanket. He looked angelic. I remembered the first time I introduced Diego to Grandma and had made the mistake of dressing him in jeans and a Stanford sweatshirt.....I never heard the end of it! "Babies don't belong in jeans!" she used to tell me. It was part of her dry Irish humor. I wasn't going to make that mistake again.

I was so eager to see Grandma but mostly for her to meet Joaquin. When I entered the room, she was very surprised to see us and then was a little upset I had brought the baby to the ER where all the "germs" are...."He should be home in bed!" she told me. There was my Irish Grandma. But she immediately softened when she saw him and it was such a special moment when I was able to introduce him to her.

I carefully laid him in her arms, careful not to put too much weight on her, but still allowing her to feel his body in her arms. I don't remember all the exact word she said because I was lost in the moment but I do remember one thing very vividly. She said something about him being beautiful and perfect. She stressed how amazing it was that these little babies turn out so perfect, how rare it is that anything is wrong. I remember agreeing with her as we both just stared and smiled at the baby.

My grandmother lost a baby shortly after birth and she never ever talked about it. My dad had told me a few years ago. I do know that Grandma wanted to see her baby again and talked about him when she was close to passing. I'm sure her comment to me about how rare it is that anything is wrong had a lot to do with her loss. I have to imagine that whenever she saw a healthy baby, she saw a miracle. I can't imagine the pain of losing a child, the pain she must have carried silently with her. I know she loved her grandchildren and her great grandchildren and that we all were a source of pure joy and healing for her.

How I wish I could talk to my grandma now. She passed away a few weeks later. She never knew about Joaquin's diagnosis. I want to talk to her and tell her about it and hear her say to me again that he is perfect and that nothing is wrong. I miss her. I now know just how close to crossing paths their souls were. The full circle of life....Joaquin coming into this world and Grandma leaving us. They had a moment together and I'm so grateful. Her words stay with me. He is perfect and there is nothing wrong with him.

Thank you Grandma. I love you.