Tuesday, January 13, 2009

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.

Monday, January 12, 2009

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.

Friday, January 9, 2009

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.

Tuesday, January 6, 2009

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.



Monday, January 5, 2009

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.

Thursday, January 1, 2009

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.