Monday, December 15, 2008

Leaving on a jet plane

So, in three days, I am going to Cancun. Alone (well, technically not ALONE alone, I mean sans the hubby and children). My boss is sending the staff of the lawfirm I work at to an all inclusive beachfront resort for 4 nights. How sweet is that? I am pretty excited....and incredibly guilty. Marty is going to be home dealing with the three kids - and I love him for it. I'm really going to miss Jaida and Jax, and Maia...well, yesterday, let's just say it was a 4 hours crying/scream fest.

With Ativan.

(I am updating this at almost 10 p.m. on December 15th - her scream and cry fest today was from 9 a.m. until about 5 p.m. - pretty much non stop - Ativan does NOTHING for her at ALL. Ask me if I was going to go insane today!)

I won't miss THAT, but I will miss how sweet she was after it was over, and how pretty her long eye lashes look with tears on them.

Recently I went to Jaida's first Christmas concert. She sang her little heart out (find me on Facebook to see her yourself!) It was something else, and I was pretty much on the verge of tears the whole time. Marty and I sat there just beaming - and while I was so happy and proud, part of those tears were sadness that we didn't have that experience with Maia. She will be 14 this spring. I still get overwhelmed at times like these.

I spent a long time last night on the phone with one of my closest friends. It's absolutely phenomenal to me how someone can live such a parallel life to mine - but years apart. I keep watching her make the same choices, feel the same way - it's sooo bizarre. I told her we should write a book together when our lives settle down - and call it "Parallel Journeys, 10 years apart". It's that uncanny. I love you, girl...you know who you are...

I feel so incredibly fortunate to have the life that I have, even with the "new" Maia. Jaida and Jaxon are the children of my heart and I cannot imagine my life without them. I tied my tubes when Maia was 5 months old and knew I couldn't face an abortion...or more miscarriages...and struggled with thinking I would never have another child. We fostered for a year - several children, all beautiful, but temporary blips in our lives. We needed that permanance.

Almost daily, we are brought to tears with our love for our children and appreciation for how they have revolutionized our outlook on life. When it was just Maia, we tried to not look past the next day, for fear of the future. We were so afraid. For us, and for her. Now we look forward and dream of all the possibilities for them. Jaida will be the smart one - top of her class so her teacher tells me! She wants to be a photographer - and goes around the house with my old digital camera, taking incredibly clear and accurate pictures of the dogs, her sister, her toys....

Jaxon will be the family clown, always trying so hard to make us laugh. That's his job. He knows it. Both of them will grow up loving their sister - they both run to hug her when she comes home from school; Jaida always helps run the lift when the Red Cross girls are in to bathe her- they tell me all the time how Jaida is such a little helper - she always wants to help with Maia - picking out her clothes; Jaxon sits beside her in bed and watches t.v. with her, and always, always picks up her toys when she tosses them out of reach. How fortunate we are to have two little souls who will hopefully, one day be there for Maia when we cannot. We have ensured our peace of mind, knowing she will have some family as we age. (We know of people with Emanuel Syndrome in their 40s, so the possibility exists she may outlive us...)

My 93 year old Nanny was here recently and we enjoyed some special time together. Maia LOVES her and it was so sweet. She also LOVES the train we have under our tree, as you can see from the video, she gets pretty excited!

I want to wish everyone reading this a joyous holiday season. I am so grateful for all the support I receive from your comments, both public and private. We will be celebrating our first Christmas this year with Maia's new little brother Jaxon who joined our family just last January, so it will indeed be a special one for our family.
video

2 comments:

Natrice & Wayne said...

cute, looks like she was having a lot of fun there...enjoying the music and the train...thanks for posting that clip...

Patyrish said...

I BUSTED OUT LAUGHING when she looked at the camera all happy! I love the "hand" thing. It's totally MY FAVORITE thing that she does!

Steph she really looks so pretty in these pictures. I think her hair this length is my favorite so far.

Thanks for the talk last night, it helped me more than you know. I may not have been totally receptive last night but PLEASE know everything you said has been echoing in my head.

What would I do without you my friend?

Maia's mom....

...is Stephanie, and started Chromosome 22 Central not long after Maia was born, after she was told there were no other kids like her daughter in Canada! Years later, we've found almost 200 families with children affected by Emanuel Syndrome - and Chromosome 22 Central has had at least 2000 families find us. Visit http://www.c22c.org/ to learn about other chromosome 22 disorders, visit our message boards, see pictures of our children, read newsletters, join email lists, and find other families! We are a true community from over 40 countries. We are also a non-profit/charity in Canada and have non-profit status in the US as well. We are proud of how far we have come! We represent families who have children with the 22q11 Deletion Syndrome (DiGeorge and Velocardiofacial Syndrome), Cat Eye Syndrome, Trisomy 22 - mosaic and partial ) 22q13 Deletion (Phelan-McDermid Syndrome) and other rare translocations and genetic disorders involving chromosome 22.

This blog is all about Maia, our ups and downs, the good, the bad, the awful, the terrific.... we go through it all with her! I try to be honest about what it's like to raise a child with her disabilities, and I look forward to hearing from other families who have kids with special needs too! Please leave me comments!

We also have a family blog - . Maia has a terrific sister and brother, who were both adopted from China. I am a carrier of the balanced translocation, and after 4 miscarriages before giving birth to Maia, we decided that adoption was the best way to increase our family. I am always happy to tell people looking to adopt what it's all about. E-mail me if you have any questions about my daughter Maia, or adoption. OUr family blog is closed, but if you are interested in adoption I'd be happy to send you an invitation, just email me!