As a birthday gift Jennifer sent Makily a really cute outfit she made.
It has special meaning.
Jennifer's son Jackson has Emanuel Syndrome and just recently turned one.
(click here to see her blog)
The first video Jennifer saw of Makily was this one:
Jennifer and I have spoken on several occasions and she has told me that this video gave her so much hope in the beginning when things were so sad and uncertain. There is such a cloud of darkness that looms over you when your child is first diagnosed with a severe medical and developmental disorder. I remember feeling like I was thrown into another strange reality and how incredibly desperate I was to find someone else that shared my same reality. I remember many a night I would type out LONG, depressing emails to Stephanie (Maia's Mommy). At the time it felt like she was the only person on the planet that had felt/was feeling the same way I did. I am so thankful for all the other Emanuel Syndrome families that have helped me through the last four years.
Jennifer has also told me that watching Makily and reading my blog has helped her so much. What she doesn't realize is that her reading my blog and being comforted by my child's determination HELPS ME IN WAYS I COULD NEVER DESCRIBE. Knowing that because of Makily there are people that read this blog and feel some sort of comfort in knowing that I TOO share their reality. That life is DAMN HARD but even when it feels like the world has crumbled around you and no matter how DARK and long the tunnel seems, that there is a light. Life goes on and it's best to try and focus on the positive rather than to dwell on the negative. Knowing that our struggles are helping other people encourages me in ways I will never be able to express.
Thanks Again Jennifer. Makily looks adorable in her outfit and she wore it proudly.
Seriously how cute is this?
Modeling.....such work!
Cutie Patootie
This one cracks me up!
Full Version of "Animal School" Video. This is a good one for EVERYONE to see, especially teachers. This is why Makily is our "Little Bee".
***By the way I fully realize I owe you guys a birthday party video and some other updates but this week has been killer and it's only Tuesday night. I think I am coming down with a cold too as all my joints are KILLING me and I am nasally. I am 30 and today I feel about 55. Hopefully I will get it together by the end of the week***
7 comments:
OMG, that is such a cute outfit!! I'm glad she had such a great party!! And you do have some idea how you all make me feel, and how you help me....I LOVE YOU!
So 37 year old me has achy joints this a.m. too (are you 30 today?! Or just hve been thirty and just mean you still are 30 today?!) Is it your birthday too?
It's too early here....!!
Steph xo
Oh Gosh Steph! You are crazy.......no I am 30 and will be 31 July 23rd....ACK! Seriously though I really feel older than I should and part of it is that I have not jogged or worked out in months. I NEED TO GET OFF MY FAT BUTT!
Every time I lifted Makily yesterday my shoulders felt awful. I gotta start pumping iron! ;-)
Those pictures are a riot. I love them. I'm glad our kids brought us together. We are truly two peas in a pod. Have a great day!
Happy Birthday honey!! WOW.
31?!!
Makily looks over the top amazing in her outfit. My only regret is that I'm shooting Jackson without Makily present in the pics.
You have no idea how much I want to shoot your baby.
SHE WOULD BE MY STAR MODEL! BIG EYES AND CRAZY HAIR! LOVE HER.
That outfit is seriously too cute! Makily looks adorable!!! It is so nice to connect with other moms who "get it". The diagnosis does not even matter, it's just getting it and understanding our own losses, dark days as well as the triumphs and glorious days! Who else but moms who "get it" can celebrate the milestone your child acheives that everyone elses kid had done it forever and a day ago. We're all connected and it's good we all have one another. Hugs to you for sharing your story, your feelings and most of all that beautiful Makily!!!
its a perfect fit! I love the way your story unfolds...
I really need to work on focusing on the positive and not the negative. I do "OK" with katy, but now I need to be like that about the other areas of my life...
I just returned from a long trip with the inlaws. I was such a crabby, complaining traveler...I SUCK!
Priceless! Does she sell those outfit??? Makily's facial and hand gestures are priceless! As always, your writing inspires me. Love you!
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