Sharing stories of fear, frustration, hope and acceptance

Archive for February, 2012

LoVe for AdAm <3

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“Any person who acts out of love is acting for God. There is no way to repay such acts, except perhaps to pass them on to others.”
– Martha Beck

Since Adam was born we have collected pictures of the nurses, doctors, therapists, and teachers who provided him with extra-special support.
We want to show him one day when he’s older all the family and friends who have shown him love and encouragement. He will know that many people worked and prayed very hard to heal him, strengthen him, teach him, and guide him. He will know that many have LOVE FOR ADAM.

He will know that on Saturday many showed their LOVE FOR ADAM. We will tell him about all the people who came, (people who don’t even know us) came to show that they care and wanted to help his father and I out so we could be there with him in the hospital.
We will also remind him with the photos that NO MATTER WHAT challenges or disabilities lie ahead: God never leaves you alone just look at this whole community of people who LOVE AND ACCEPT him just the way he is….

May GOD BLESS all the people who have taken time out of their lives to help us or pray for us during this challenging time. You have lifted us and strengthened us with out expecting anything in return. We are forever grateful and we plan on passing the love on to others…

Thank you for showing
your LOVE FOR ADAM,

The West Family

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More than Words..

What does it mean to interact?

What constitutes interaction or communication?

Is it a conversation? What if one is unable to speak or Sign?

Is it a look? A touch? A feeling? Or the combination of all three?

I miss my son very much and I don’t know if I should feel thankful for what we had or thankful for what we now have. After much thought I realize what I miss is not necessarily holding him or laughing with him or playing as a family.
It’s the interaction, the “back and fourth” part of communication, the acknowledgement of one another’s presence. I guess my heart is trying to reassure my brain that even though he is temporarily unable to respond; he does not feel alone, or afraid and he is aware of my love and senses my presence…. I don’t know, I hope and pray he does.

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Hospital Fatigue

There’s truly no place like home.

It’s been five weeks that Adam has been hospitalized. Its getting harder and harder to have patience with this whole hospital scene. Doctors, Residents, Fellows, Nurses, Respiratory Therapists. Some, if we are lucky, take some time to get to know Adam, but two or three days later they rotate…

I’m tired of this place. I just want to pull Adam free from all the tubes and machines, free from all the labs, and tests and doctor-lingo (short for “we don’t know”).

I KNOW IT’S ALL TO HELP HIM!

When he opens his eyes I have to remember to breath. My heart starts beating real fast, almost out of my chest! I get so excited because it’s one step closer to home. I can’t help but to wonder how Adam must feel. Can he see me, does he sense I’m always here? I know he wants me to hold him. I know he misses his momma because I really miss him too!

Some might say I should be thankful because things could be much worse. At this moment I don’t care- I just really want him to be well already. I want to take him home where our world is free from diagnoses, home; where we can close the door to strangers, home; where he and Frankie can play, forget about all things “wrong” and just be thankful for what is right. Home where we can Sign and he can cruise and bang the walls all up in his “BMW”.

HOME WHERE HE CAN BE OUR ADAM AND NOT JUST ANOTHER PATIENT.

Worth Reading

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“The realization of how precious Adam [is] to me, how much my life is lightened by his presence, and how lost I would be without the angels he brings with him; as my friend says, the way a dog brings fleas.”

“He may not have the features you requested, or be able to perform all the tricks. But put him in place, and he will light up your life.You have no idea how much magic is in him.”

“I gave the psychic Adam’s name and birthday.”
“I have to explain this to you, said the psychic. You see, Adam is an angel. Angels are different from other metaphysical beings, occasionally they decide to incarnate- to become human for a while. Not that they have to, you understand. Sometimes that’s just the best way to do what they want to do.”

I’ve been reading this amazing book ironically titled, “Expecting Adam”. The author is Martha Beck, she happens to be a contributor for O magazine.
– the similarities: I’m in awe….

“The meaning of life is not what happens to people…
It’s what happens between them.”

“The Oak Tree”

A card from my cousin. I received the day after Adam went into status for an entire day.
(Status- seizure that does not stop).

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A mighty wind blew night and day. It stole the oak tree’s leaves away, Then snapped it boughs and pulled it’s bark. Until the oak was tired and stark. But still the oak tree held it’s ground while other trees fell all around.

The weary wind gave up and spoke,
How can you still be standing, Oak?”

The oak tree replied,
“I know that you can break each branch of mine in two, carry every leaf away, shake my limbs, and make me sway. But I have roots stretched in the Earth growing stronger since my birth. You’ll never touch them, for you see, they are the deepest part of me. Until today, I wasn’t sure of just how much I could endure. But now I’ve found, with thanks to you, I am stronger than I ever knew.”

Especially now, try to remember that you are stronger than any problem you encounter or any disappointment life will bring….AND SO IS YOUR CHILD

Wild Fires

Look for this Artist: Rachel Aldous
Song titled: A Mother’s Prayer
(I found on utube)

I have become frustrated with doctors and their lack of listening skills. Adam has a thing he does with his eyes just before he seizes. He will stare a blank far off stare and his eyes will get stuck in a kind of day dream. We call them “starring spells” since, according to the neurologist, they are NOT seizures. (Lately he’s been having facial twitches as well.) These are “not seizures” either. I call them very important WARNING SIGNS. Last night thanks to the night nurse I was able to maintain my sanity because Adam was exhibiting these behaviors and I’ve been telling the doctors only to hear the response, they are not seizures.

I knew something was coming. I felt it- something was stirring in my gut mixed with anxiety. I paced like an animal-mother would near her wounded baby.

Nothing happened. I went to sleep. At 5:30am I awoke to find that Adam had begun to seize. He went into “status” until 10:00pm. Today he is in a “Pentobarb Coma”. It’s a medically induced coma to help his brain completely shut down. The hope is he will awake slowly as the meds are reduced and his brain will have rested enough to protect itself against seizures.

Now he not only has a breathing tube, feeding tube, catheter, EEG continuously recording and a pick-line; one in his arm and another iv access in his neck but he also had to get a blood transfusion.

I often say that doctors underestimate Adams “ability” to seize. I know better. When Adam’s brain begins to seize if it doesn’t get meds soon enough it’s like an angry wild fire. I know, I’ve seen it. I can’t help to wonder if the doctors would have listened to me and Adams warning signs could this have been prevented. Now the doctors have seen it for themselves. MAYBE NOW they will listen, maybe now Adam has their attention.

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Good Times Coming

Dear Readers:
I have gotten some feedback about my recent blogs. I just want to assure you that all my blogs will NOT be so sad.

Unfortunately our family is facing one of the realities of caring for a child with extra-special needs. I decided to share these experiences in hopes to offer support to other parents in similar situations.

The good times will come again and I will keep you posted but in the mean time THANK YOU ALL- family, friends, and readers for ALL your support and generosity during this difficult time.

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