My thought for today!

Today I went to my niece’s birthday party. She turned 4! I’ve been trying to reconnect with my family since moving home. It’s been harder than I thought it would be. Mostly because I’ve lived away my family for over 25 years. Anyway

While she was opening her presents she was so excited and was trying to open up a package and had some trouble, so mom tried to help her and she cried out “I can do it”. All of the sudden a time rushed into my memory of my Brittany when she was two opening her presents and saying something very similar like “my can do it”. Tears welled up in my eyes and I had to secretly leave the room. I became so overwhelmed with sadness and grief. And I wasn’t anticipating it. That’s grief! It comes whenever it wants and stays for however long it wants.

I was reading an article about a family who has a child with autism. She said something publicly that I’ve not really had the guts to say to anyone face to face about how I feel. But I’ve been able to write it for the most part here and in my personal journals. But here it is in a nutshell…

“I put on a good face in the public,
but in the most private recesses of
my being, I felt my heart start to die
a little.”


When Brittany was first diagnosed with encephalitis at 11 months of age, the grieving process began then. The loss of normalcy as we knew it to be was gone. We were left to find our way into a “new” kinda normal. As the years went on and the disabilities became more apparent, the reality was clear to us, but not for everyone else. For on the outside things looked normal. But on the inside “our private home life” it was far from it. The future was uncertain.

Then at age 5 the diagnosis of epilepsy was devastating to us. I was in nursing school at the time and knew what the complications could be. Then the constant battles with insurance, medications, doctors appointments, medical tests… it was all consuming. Then the words of that mother I mentioned earlier…

“I put on a good face in the public,
but in the most private recesses of
my being, I felt my heart start to die
a little.”

Then came the diagnosis of Crohn’s Disease. Age 10 was a rough year. She experienced stomach pain, increasing seizures and we didn’t know what was going to happen. Then after a year of up and down moments…things got better. But what it was really was “the calm before the storm”..

“I put on a good face in the public,
but in the most private recesses of
my being, I felt my heart start to die
a little more….”

Her last year of life was constantly in turmoil. But she lived it full of life and never let it get her down, well not for long any way. But once I realized we were dealing with something truly devasting…..

“I put on a good face in the public,

but in the most private recesses of
my being, I felt my heart start to die
a little more….”

Her last year of life was constantly in turmoil. But she lived it full of life and never let it get her down, well not for long any way. The really good stuff that happened…having found her best friend Caro and her love Andy. She had finally found what she’d been missing for so long. Acceptance of her peers.

Then the final months of her life were the worst of my life, because down deep I had a sick feeling things were going to get worse. But I never thought she would die! Then she did! Without warning, not even a chance to say goodbye! My last words to her “go do your homework”. There at her desk minutes later – she had a severe grand mal seizure for which she never recovered. Over the next 12 hours I watched, them try and revive her 4 times. Finally stopping it all because the doctor said her heart couldn’t take much more. I couldn’t take seeing her the way she was, my last vision of her being pounded on and shocked….

I know it was her time – I’m a nurse – I know they did everything they could – but God wanted her more. I’m glad she doesn’t have to suffer any more…but when does my suffering end?

These words are mine now since the very moment I said STOP CPR….

“I’ve been putting on a good face in the public,
but in the most private recesses of
my being, a part of my heart has died
and a hole now exists never to be
filled again with a love of a child.

It rests next to the other hole in my heart
where my mother used to be, which lies
next to the hole where my grandmother
used to be, which lies next to the few other
people who have broken my heart.”

My hope is in the Lord to heal my heart because it is written “God is close to the brokenhearted, he comforts them.”

m

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2 thoughts on “My thought for today!

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