A Letter from Big Brother Diego (age 5)

Dear Joaquin,

Baby, I like you so much because you are so cute and fuzzy. I am happy to be your big brother. I like to play with you and put your toys in front of you so you can crawl to get them. I like to call you “Softy” because you are so soft. When you grow up some day, I’ll miss you as a baby because you are so cute. When you are 5 years old, I’ll be 11! I want to teach you how to play soccer, basketball and baseball. I love you very much.

Diego

Baby Steps

A moment of sadness. It was a very quick fleeting moment but I had it nonetheless. I'm not sure what it was exactly but I felt it and then quickly it was gone.

I attended a preview music class at our local Gymboree. I did many of these types of classes with Diego and Mateo when they were young and it was a fun way to meet new parents and babies around the same age. This was my first time taking Joaquin to a formal class setting where I didn't know the teacher or at least one parent in the group. I am a member of a local parent's group in town where I attend lots of different play groups and events with parents and children that I know quite well but I wanted to try something new with Joaquin, to take a step out of my comfort zone.

This Gymboree music class was unchartered territory for me, a brand new experience for the two of us....our first step toward full inclusion. Why not take him to a "typical" music class for a baby his age? I signed up for a free preview class while Diego and Mateo were both in school. It was a great class and the teacher had an amazing voice. At the start of the class, we sat down to smiling faces all around, lots of cute babies and moms. The teacher started off with a welcome song. It was then that I felt a pang of emotion. I began to tear up and I'm not sure why. I would call it a moment of sadness but maybe it was just a moment of all sorts of emotions wrapped up into one....fear, anxiety, sadness, shyness, pride, hormones? It's moments like these where I am faced head on with the reality that I am on a different journey than most of the people around me. It can feel very lonely. On the one hand, I want to include Joaquin in as many of the same experiences that I participated in with Diego and Mateo and then at the same time, I see a benefit to attending classes or events surrounded by parents who understand our situation and are "walking the same walk" as I am with their own special children. I can see how both scenarios could be beneficial.

Throughout the class, Joaquin was mainly interested in looking at me, watching my face. So I just immersed myself in the moment and it was as if it was just the two of us in the class. Occasionally a mother would ask me "How old is he?" or "He's so cute" and I would return with my own curious questions about their little ones but otherwise it was a special time for Joaquin and me. Focusing in on Joaquin grounded me and I felt more stable in my emotions....I was able to hold it together but a very small part of me just wanted to get out of the room and back to our comfort zone. We stayed and we ended up having a wonderful time. We focused on the moment and living it. The here and the now.

When I try and get to the root of what my feelings were during the beginning of class, it's really hard. I think I've been living in sort of a protected bubble this past year. I've surrounded myself with my support system of friends and family and neighbors, even fellow bloggers, and it has all been a very safe place to be. As I start to venture out into the world and as I take the steps that need to be taken for Joaquin, I'm a bit afraid of what might be out there. I'm afraid of the ignorance and the cruelty.

But maybe the tears that started to well up in me as the Gymboree class sang out Joaquin's name and we sat there, the two of us happy and healthy and living our lives, were also tears of hope. Hope that perhaps everything will be o.k. We were taking our first baby steps together.

Baptism

Joaquin was baptised on December 21st at Sacred Heart Church in Sacramento. Many of our friends and family were with us to celebrate this special day. Jose and Virginia are dear friends of ours and we are so happy they agreed to be Joaquin's Godparents. Hector and Jose have been friends for a long time when they met in Mexico City. They are a very special couple, so full of love, and they have always been so kind and caring to all of our children.

Joaquin wore a baptismal gown that was handed down by my Aunt Giovanna from Italy. It is over 50 years old and was handmade in Italy. All three of our boys were baptised in it. It's the only time our boys have worn a "gown" and all three of them looked beautiful in it. Little porcelain dolls.

We had a beautiful brunch after the ceremony at my parents house. Even with the rain, it was a perfect day.

We are so grateful to God for giving us the gift of our son Joaquin.


Jose (a.k.a. Pollo) and Virginia, Joaquin's Godparents.


Joaquin ready for his big day and wearing his cross from Pollo & Virginia.


Joaquin with his Godmother Virginia.

Bye! Bye!

Joaquin is waving bye bye and it is the cutest darn thing you've ever seen!!!! I will try and catch it on camera and share it here on this blog. Oh my gosh, it makes me want to cry it's so sweet.

I have to hold his arm up for him most of the time to help him focus on waving but with lots of practice it's coming easier and easier for him. I'm so proud! I think he's proud of himself to, you should see the grin on his face when he does it.

The Year My Son and I Were Born

Kathryn Soper wrote a memoir about her first year mothering Thomas, her son who has Down syndrome. It's titled The Year My Son and I Were Born, we can't wait until it comes out in March. Here is a little promotional montage she put together. Kathryn Soper is the mother behind the "Gift" book and "Gifts II" that is coming out later this year or early 2010 which one of our essays is included in. Very exciting!

The Future of Prenatal Testing

Where are we going with prenatal testing?

Once again, a fellow blogger has posted a subject that I think about, talk about and write about all the time with people. Please see this post for a most amazing look at the topic of prenatal testing- question of life or death. Malakai's mom takes the words right out of my mouth. I was in tears after reading it.

Just the other day I got an email from a friend who wanted to know more about the startling statistic that I've written about in the past....that 90-91% of pregnancies are terminated when a diagnosis of DS is given after an amnio. This friend of mine asked if the statistic is slightly skewed by the fact that most people who get an amnio are more likely to terminate anyway, hence the reason they are having the amnio. It's a good question and makes some sense but it's still horrifying. I believe this is one of the biggest areas of discrimination still remaining in our society. Life or death decisions are being made based upon a diagnosis that is hugely misunderstood. Please look at my Joaquin. He is the child being aborted.

I also have friends that have brought up the fact that maybe not every parent is equipped to handle a diagnosis of DS therefore it is in the best interests of the child that he be aborted rather than have parents that are afraid or incapable or just plain don't want a child with a disability. I really don't know what to say to that. Like Malakai's mom mentions in her post, what if your child is born "perfect" but suffers a trauma at birth that leads to brain damage? What if your child is hit by a car and will never walk or talk or is now mentally disabled? Are these parents that would have otherwise terminated a child with DS going to fail as parents now? Probably not. I would hope they would rise to the occasion and do what was needed for their hurt child because it is their child. Right?

What if they develop a prenatal screen that tests for autism? for depression? for ADHD? for bipolar disorder? for leukemia? for diabetes? for obesity? for breast cancer? the list can go on and on. Would it be ok to abort based on this information? Where are we going as a society with this kind of testing? I cringe to think of where we are headed.

I am passionate about this topic. I feel moved in ways I cannot explain to reach out to the world and make a change. I don't know how I will do this but I know that I have to. Joaquin is the most amazing child and has every right to be here. Please tell me, what human being is perfect? who would want to live in that world anyway.

My sister in law, Jennifer, just emailed me this creed and I think it explains it all....

THE DIVERSITY CREED
By Gene Griessman © 1993

I believe that diversity is a part of the natural order of things—as natural as the trillion shapes and shades of the flowers of spring or the leaves of autumn. I believe that diversity brings new solutions to an ever-changing environment, and that sameness is not only uninteresting but limiting.

To deny diversity is to deny life—with all its richness and manifold opportunities. Thus, I affirm my citizenship in a world of diversity, and with it the responsibility to….

Be tolerant. Live and let live. Understand that those who cause no harm should not be feared, ridiculed, or harmed—even if they are different.
Look for the best in others.
Be just in my dealings with poor and rich, weak and strong, and whenever possible to defend the young, the old, the frail, the defenseless.
Avoid needless conflicts and diversions, but be always willing to change for the better that which can be changed.
Seek knowledge in order to know what can be changed, as well as what cannot be changed.
Forge alliances with others who love liberty and justice.
Be kind, remembering how fragile the human spirit is.
Live the examined life, subjecting my motives and actions to the scrutiny of mind and heart so to rise above prejudice and hatred.
Care. Be generous in thought, word, and purse.

Time flies.....

A post from Hector...

I can't believe it has been almost a year since Joaquin was born. It feels like he has always been a part of our family, I can't even remember what I was like a year ago.

What were my thoughts and what were my hopes?

Mateo will be 4 in a couple of days and Diego will turn 6 in April. Time flies but one thing is for certain, Joaquin's first 11 months feel like a lifetime in all respects.

We cried a bit but we laughed even more. We ran around different places and so many appointments but we sat and gazed at him in astonishment even more. We had countless sleepless nights but with him by our side it felt like such a blessing, listening to him breath knowing that he has nothing to worry about. He will be loved and cared for. Then, in the morning when he wakes up between Jen and I, he smiles, and you know what real love is.

Kindred Spirits

Often on this journey of mine, I am inspired by all the other mothers and fathers of children blessed with Down syndrome. I have had the pleasure of "meeting" them through their blogs and sharing in their journey. Just today, I "met" a mother that I feel could be my kindred spirit. Everything she writes speaks to me as if they were my own words. Even her son, Malakai, could be Joaquin's brother. Her blog can be found at malakaistow.blogspot.com. I have enjoyed every word I've read on her blog and I am overjoyed to see that she is looking into the Institutes in Philadelphia. I believe she lives somewhere "down under" but I haven't confirmed exactly where yet. I wish I could hop on a plane and meet her tomorrow.

On her blog, I came across a letter that she found in a local DS newsletter. I must share this letter because I feel the very same way about Joaquin. Another kindred spirit, these father's words could be my own.

"Always Reaching" written by a father of a child with Down Syndrome:

From the STL DS Newsletter
by Matthew’s Dad

Every time I see my son, I reach for him.

It doesn’t matter if he rounds the corner 4 seconds after I have seen him last, or if I am picking him up from school and have not seen him for hours…I reach for him.

I can be 1 foot away or 100 feet away…I reach for him just the same. I reach for him with my arms, with my eyes, with my heart.

I wonder sometimes what I am reaching for.

I have seen this in other people when they see my son.

My family, my friends and perfect strangers. They all reach for him.

I see the same movements, the same gestures, the same need to hold out their hands for him. They want him to come to them, some know him and some don’t. Some call his name and others just motion for him. But they all seem to want him to come.

For a moment, you can see his spirit reflected in their faces. I watch the smiles grow across their faces with a fullness that is unavoidable.

When he falls into their arms (which is what he does to everyone), I see a momentary peace envelop them, and their eyes close, they pull him in and they experience what I call “The Joy of Matthew”.

He gives it to you. He wraps you in it. He wriggles and squirms and mashes the love into you. If you did not know what to expect, you may be surprised and find yourself amazed at the feeling, overwhelmed at the emotion he carries with him.
I am lucky. I get to hold him all the time.

And I have been able to think about that feeling and where it comes from and what it may mean. I think Matthew is a window through which we see a pureness of emotion… pure happiness, pure sorrow, pure joy and pure love.

Despite what some may think, our special children are closer to God than we are. We see so much in them that we lack. We wish quietly in so many ways that we could be more like them. And when we hold them, if just for a moment, we feel closer to God.

That must be why I am always reaching for my son.

That must be why they all reach for him.

Gratitude

Goodbye 2008....welcome 2009!

What a year it has been. One that I'm sure we will look back on for the rest of our lives. It was the year our lives were changed profoundly by the addition of our third son.

Let me share my thoughts of gratitude as the first day of 2009 comes to an end.

I am grateful for my husband who is so patient with me.
I am grateful for my children who give me so much love and joy and test me constantly and help me to be a better person.
I am grateful for our family, our friends, our neighbors, our community who have helped us in ways too endless to list here.
I am grateful for our home and it's coziness and closeness and the memories that we are creating in it.
I am grateful for our stability in terms of having a steady income from Hector's job and my ability to stay at home with our children even in these tough financial times.
I am grateful for our health.

My resolution this year is to live life one day at a time, to be present and to enjoy the simple things. I have made this resolution in the past and it has always been a challenge but I have a perfect example to follow and learn from now. Joaquin reminds me daily of what is good in this world. His constant smile cheers my soul and melts my heart. I know he has the same effect on Hector and the boys. In fact, he has the same impact on everyone he meets.

Happy New Year and may 2009 be filled with peace, love and joy.