Happy New Years everyone! Can you believe it is already 2016? I don't know about you but in some ways our 2015 was never ending, in other ways it flew by.
Christmas 2015 is in the books. We had a full day of time with family, food, and of course gifts. Every year my kiddos receive something they want, something they need, something to wear, something to read and something to give to others in need.
I've said it many times before, I LOVE pictures! I have always had them in every nook and cranny of my home. I think professional ones are the most worthwhile investment you can make.
It's been awhile since I've done an Ellis update and this seemed like the perfect week to do it. In 3 days it will have been a full year since Ellis came off the vent.
I didn’t figure out what he meant that day, but it all came together the following week when we were in the car once again driving home.
The big day has come. Our Ellis has now turned the big ONE! I can hardly believe it. The moment we were told would never arrive is upon us.
I have some BIG news I have been chomping at the bit to share with you all, my insanely amazing community of readers, on the eve of Ellis’ first birthday no less.
I was always the curious kiddo, never was satisfied with the "because it is" or "because I said so" answers. I wanted to know and understand the why's and the how's. I'm realizing many others are the same. Our life has been so public this past year, I think it creates a greater curiosity for what really happens behind the scenes. I get asked LOTS of questions from others in my daily life, mostly via social media. It's surprising to see some of the questions strangers are asking seem to be the same questions my friends are asking me when we get together.
Recently I started a weekly Q&A on my Facebook page where readers can send their questions to firstname.lastname@example.org and each Wednesday I will choose one to answer. We dove right in last week with the question of "would you ever date again?" Much to my amusement that seems to be the #1 question others want to know.
This week the question was about Ellis, new scans and her future prognosis. I thought I'd share an example of my answer.
On the question of scans:
Ellis has not had any scans since her hospital stay a year ago. The reason for this is simply because they have not (thankfully) been imminently necessary and would not change our current approach to how she is being treated. People can sometimes forget that these tests involve radiation that can be very harmful to babies, especially when a child has already had numerous tests performed prior. That coupled with the fact that she would have to be put to sleep for the scans make it something that is not immediately necessary or of added value. Scans are meant to give you a clear picture as to the status of the brain and a picture of what is to come based on that status. While I do agree scans can be useful in some cases, in hers she is already doing 100% of the things that the "scans" said she would never do. Sometimes there's what the medical books say a scan will mean and then there's the reality of what you see in front of you. In our instance those have been two wildly different things and our medical community around us wholeheartedly agree.
On the question of Ellis' future:
As far as her future-simply put Ellis is an anomaly. I don't throw the word miracle around lightly but there's no doubt she is one. We are constantly told by many Nurses and Doctors that there's no medical explanation for how she's able to do so well. For that reason, they honestly have no idea how to define what her future holds. We have been told by other Doctors that they believe she will catch up in the years to come and make a marked recovery. The most important thing is she is making continual progress/steps forward every single day. We expect that to continue to be the case as her brain grows and heals. There are many fascinating studies about the brains ability to grow and adapt, especially when the injury in question occurs at an early age. While you never "want" to have a brain injury, the younger you are when the injury occurs the greater the odds for recovery.
I will repeat again-there's really no way to gage this baby girl. She stands in contrast to everything she "should" be. We believe there's no limits to who she WILL be. We are believing for great things.
Ellis is growing and changing daily. As you can see in the pictures below head control is no longer an issue for her. Now we are working on even better core control. She has been working on her standing, which she loves. For the first time they put her on a treadmill to learn to take her first steps, which she did with both legs. She's in the very beginning stages of mastering these skills but it is huge progress for her. I can see her confidence growing every day.
I find it interesting many of the questions I receive pertain to the future and what that holds for us. It has become clear people have such a strong desire to know what's ahead, to plan for their own future. What few ever take into account is how quickly life can change, in an instant. Truth is I don't know the future any more than any of us do and I try to hold my plans loosely. I know what I feel in the present and that is thankfulness for where we are.
If you have a question you are dying to know, shoot me an email. I'd love to answer it over on Facebook.
Stay tuned in the next two weeks as I will have some very exciting posts coming up on the blog. One of them will be a wrap-up of Ellis' first birthday which will be next week (can you believe it?). The other will be a MAJOR announcement.
How's that for a teaser? Keep checking back, or better yet, follow along by hitting the button to your left.
Some exciting things coming down the line for our little family. Stay tuned...
I have heard people talk before about the "secret to life". I suppose there are many of them covering a wide-array of topics. Yet the older I get the more I realize one in particular which has been so crucial to our family. You ready for it???
JOY is a choice.
HAPPINESS is what wells up inside you at certain moments, at certain events, at certain times. HAPPINESS is a feeling.
JOY is something that can be present, even in sadness, disappointment and loss. JOY is a choice.
We are learning more and more that JOY and sadness can co-exist, each having their rightful place.
When I chose the name for the event we do every year to honor my husband, Choose Joy, I admittedly didn't give it much thought.
"In our sadness we Choose Joy" I thought simply.
I had no idea how much the concept of choosing JOY would become something our family would grasp to so tightly. Our family motto, so to speak.
Moments of HAPPINESS arise for us at different times. More now than it did in the immediate after-math of Joel's death. But JOY is something we hold as a value, a choice we make to walk in daily.
When JOY is a main-stay PEACE walks beside. I have found that the combination of the two is what has sustained us the most.
We have sadness in the loss of Joel. We have sadness in the moments we've lost with Ellis, and how difficult our journey can still be. All of those exist, daily.
Yet the weapon we hold that is more powerful than anything we face, is what we choose to walk in.
We choose to walk in JOY.
Death has robbed too much from this family. Too many days. Too many moments.
We have a saying in our home-we don't let fear win. Well, we also won't let death win. Or sadness win.
We conquer those things by living from a place of JOY.
There are still days that it is harder to make that decision than others, and sometimes we make it with tears running down our cheeks.
Each morning as I rise I make a choice of where I allow myself to fall. I have found there's no safer place to land, then in the arms of JOY.
Here are some of my recent, favorite and most joyful moments with my family.
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One evening my husband and I were watching the show King of Queens. My husband grew up in New York so he could relate to many of the themes that ran through the show about living life back East.