Monday, March 9, 2009

the journey ahead

This is a video about the Journey involved with raising a child who is diagnosed with Down Syndrome.
I enjoyed watching this and I think you will too.

The Journey Ahead from Christian Appleby on Vimeo.

We are learning so much every day about what this diagnosis means and doesn't mean. It hasn't been easy to talk about with everyone - but we've gotten so much love and support about this and we are so grateful for that. Max is an incredible light that fills up our lives in so many ways. I'm so glad he is in our lives and I can't wait to learn more about him as he grows up and shows us who he is. I sometimes fear that I won't have a clue as to what to do or how to be the best mom for him and his specific needs and I am sure all the moms out there can relate to that one!

We signed up to be a part of the Down Syndrome Associate of Los Angeles and through that organization we were given the name of a married couple who also have a baby with down syndrome. They will be our mentor family. We've talked with them on the phone and plan on meeting with them soon. I'm so excited about that. It's nice to talk with other moms out there but to talk with one who also has a baby with similar needs as yours is so relieving in a way. I plan to sign up for everything possible. We are going to go to a group soon to meet other parents and I think that will be a great way to learn more about early intervention that we will get for Max, and what all is out there. There is a Huge round up in a few weeks that takes place at the skirball center here in LA and Jerry and I plan to go even though it's technically a "mom's luncheon".

For all the people out there that don't know what to say when they meet someone who has a baby with a developmental disability - you can just say " your baby is beautiful, what a blessing! "
pointing out how he looks - or as he grows if things make him look "more down's then last time you saw him" isn't really a fun fact to point out. How about " Look how cute his ears are! " or " What a sweet baby !"
I think the most important thing I'm trying to say here is that a baby ( or any person ) is a human being first, not a diagnosis.
Getting to know him for who he is - is key to all relationships. Pointing out the things that are "different" isn't really helpful in any way. Telling me that you are not going to tell other people about his diagnosis because you don't want them to be upset - is upsetting. I can't quite put my finger on why this bothers me - but it just feels like you are saying that some thing is wrong with him that others are not going to be able to handle. I think that would be better kept to yourself if you feel that way - instead of telling me that.

Ok that is my daily rant.

Right now Max is in his sling that I am wearing on me and he is content as I type. I just love having him near me this way.
I've loved the early morning feeding time with him. I love being up right before and during the sunrise with him. I love the ritual of it. I love sharing feeding times with Jerry so we can take turns and the other person can sleep more! Jerry likes the late night feedings and I like the early morning ones. I just adore watching Max. His facial expressions, the way he moves around, the way he deals with his bottle, and how he communicates. He looks so different every hour! We are amazed every day at how much he is changing right before our eyes. I hope you get to meet him soon! Yes You!


clairity said...

Hi Family!
I love your blog Catherine!
I'm so happy for all of you there enjoying each other so much!
We keep up the milky flow thoughts for you! My mom is visiting and I showed her all the pictures and we are just in adoration of all of you. So lovely to see.
Baby Max is so cute, I love looking at him (almost) as much as my babies! I wish I could hold him so much! Akiva is one tomorrow!
I've got you on my feed now so I can keep track of you! Thinking of you on your babymoon!

Catherine Just said...

you are so sweet Claire. Thank you so much for the thoughts and well wishes. I can't wait to introduce you to Max and I can't wait to meet Akiva!