Joey is 3 1/4 years today. A milestone. A victory. A reason to be thankful and count our blessings. With every new season there’s quite a bit of adjusting. The last four I’ve found myself surprised we got a little more time. Grateful as well as unsure and a little scared… What should I expect? What plans do we make? And, will there be another season?
Winter was rough. Spring got a little easier. And I guess we will see what summer brings. Joey is very weak and continues to decline, but has enjoyed a few good months free from sickness and respiratory bugs. He does OK for a few hours off the O2 here and there. Although inconsistent and not always very productive, he’s still able to cough. He’s tolerating feeds well and we don’t see nearly as much seizure activity as we did a couple months ago. There’s a lot to be grateful for indeed.
We are trying to live and not give too much thought to his death – or new life, if you will. Ironically, death, or the anticipation thereof heightens your senses and makes you feel more alive at times – a beautiful sunset turns into a breathtaking master piece; music does not just bring you joy, it stirs your heart; the smell of your favorite meal cooking makes your mouth water but it also brings comfort to your soul; a soft little hand resting on your shoulder fills your heart with unspeakable love and for a split second, maybe an hour, everything is just right in a dark and fallen world.
The same inescapable anticipation can also dull your senses, sometimes numb you completely. Your lament becomes your praise. You see smiling faces but the sound of joy and laughter don’t reach your ears. You buy your favorite coffee and drink it every morning – not because you want it, but because it has become habit. It’s a life of extremes and intense contradictions; we both live and die a little bit every day of every season.
As we are stepping over another threshold of transition we continue to fight through the heartache and the pain, we continue to learn about unconditional love and uncommon grace and we continue to live – trying to do so full and well. We do it because of a pure and innocent little soul who fights hard each and every day, who loves without limits and who lives fully and beautifully even though he’s dying.
And when he can’t fight anymore, when he can’t live anymore, we know his love and strength will propel us forward. We know we will need to live on and fight thru. We know we will because he can’t.
One thought on “3 1/4 – A Milestone”
The anticipation of definitely does heighten your senses. Sometimes it’s exhausting to live in that heightened world. Sometimes i just shut down and try not to feel or notice anything.
I’m glad Joey is having fewer seizures and you have had a nice season of respite. It’s impossible to plan for the future, so I’m happy that your present is somewhat easier.
I think of you and Joey frequently. I really enjoyed our brief talk at the conference. I get great comfort seeing the strength in my fellow moms as our kids fight this terrible disease.
I hope summer brings you all comfort, regardless of the direction of Joey’s health.
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