Because Saying it Isn’t Enough–You Need Swirls

swirlslastLast week was the official launch of Juliana’s Journal. I’ve been writing for seven months but wanted to wait until I had enough on the blog for people to actually read. I am always overwhelmed and grateful for the response and feedback we get when people learn more about Juliana and what we’re experiencing. Again, I feel fortunate that we have so many people who love all over us and offer encouragement and support wherever they can. We seem to get these little snippets everywhere and it never gets old.

The other day, Juliana had a late afternoon appointment with a new doctor. The girls were antsy and I was wiped out. When asking about her history I told the medical assistant that the information was unknown because Juliana was adopted. So that she could add it to the record, I then told her that Juliana had severe developmental delays. “What you’re doing is amazing. It’s so beautiful.” She immediately responded with a big smile. I mumbled a few words of thanks and said it’s not always easy but we are doing our best.

And I say the same now. We are in this on a daily grind, trying to do this the best we know how (and making up a lot as we go as most parents do). My goal is to live a good and grateful life despite our current challenges. Believe it or not, a simple email, Facebook comment or “Like” brings a smile. It says what our neighbor put into words “You aren’t in this alone.” And I know that is true because so many friends–old and new stopped by the blog.

Being the creative type that I am, I felt that a simple Facebook shout out wouldn’t be enough to show our appreciation. So, I had the girls pull out all the stops to make their best swirls (pictured above) just for you.

Thank you so much to those who checked in near and far—from Atlanta to Raleigh; New Orleans and Dartmouth alike. I do hope you will continue to be a part of our lives and Juliana’s Journal.

Tell Me this Won’t Go on Much Longer

Ugh!, Ugh!, Ugh!

That is my thought of frustration as I referee another fight between Juliana and Jessa.

Hands down! Feet down! and No touch, Sissy!” are spoken countless times a day in our house right now. We are all anxiously waiting for this phase to pass.

Technically, they’re not really fights. Juliana seems to be on a mission to “Get Jessa.” At any given opportunity, she can scarcely resist a tug of Jessa’s ponytail or if her hands are occupied, a swift kick to any body part she can reach. Once, she almost knocked herself down attempting to kick Jessa with her leg. I’m laughing as I think about it, but when it’s happening it’s not that funny.

It seems that this mission started the moment that Jessa came home from the hospital. In Juliana’s mind, I’m sure she suddenly felt there was someone taking away all the attention she was getting from mommy and daddy. Then, we progressed some and the grabbing seemed to level off. Juliana seemed much too occupied with school and therapy to be worried about attacking her sister.

Then, boom! School gets out this May and summer hits. She has sailed into attack mode with a new vengeance and energy. I guess with the loss of a full school morning, she wants to intently focus her attention somewhere and Jessa seems to be the object of choice. And the mood seems to strike everywhere; the pet store, the library and even while watching the 4th of July parade! We have very few pictures of the girls together because we have to keep them apart or distracted to keep some peace.

Sometimes, I’ll see Juliana giving Jessa a look that says “Why are you still living here?” Then today, I had an Aha moment. During a morning drop-off at therapy, Juliana hauled off and tried to swipe the glasses off one of her classmates. This was because the therapist and I had directed our attention to him. That showed me that she is not interested in having ANYONE take attention away from her. Jessa takes our attention away so she lashes out in protest.

“Hands down! Feet down! and No touch, Sissy!” are spoken countless times a day in our house right now. We are all anxiously waiting for this phase to pass. Jessa has developed her own coping mechanism. When Juliana is reaching out for a grab, she lets out a loud shriek and takes off running. I holler “Go, Jessa, Go!” and she is so tickled that she forgets that Sissy is “after” her. This gives us all a laugh and relieves a little tension from a stressful situation. Friends tells us this will pass and I keep asking myself when?

I know there are many of you out there who can relate. Special needs parent or not, if you have gone through this phase with your kids and have words of encouragement, I’d love to hear your story in a comment below. Siblings are welcome to jump in too. If you or your brothers and sisters had it out for each other how did your parents get you to a truce?

Please share because I need validation that this is a phase that will soon come to pass.


Celebrating Li’l Miss Independent

patriot 1As many Americans did, my family and I spent last Friday celebrating Independence Day. I can’t help but think of the freedoms that we share that so many other countries do not. As Americans we are rich beyond comparison not just in our wealth, but in the little things too–like cookouts and firework shows; those special moments that we sometimes take for granted. Of course, my mind also floats to Juliana and I can’t help but think of some of the personal independence she enjoys because she can now do the following:

  • Sit up alone
  • Climb stairs
  • Use a device to make choices
  • Walk independently
  • Feed herself with a spoon

These are just some of the important things that stand out. Of course she has achieved many other milestones that we never thought we would see. We are happy for them all.

So, although the parades are over and the fireworks put away until the New Year, I hope we are all reminded of the freedoms that we get to have—those large and small that make our independence worth remembering and appreciating.