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I thought I would share some poems that are very inspirational... There are some people whom I have had the pleasure of meeting on DS that I could not imagine what they are going through... My prayers are with you. And then we have my daughter who is my hero, full of laughter and love, but how she has struggled so, until recently. So here are some poems I read often, and they give me much peace of heart. God Bless, Katie Mac.
To All Parents
I'll lend you for a little time a child of mine, He said,
for you to love the while she lives and mourn for when she's dead.
Love Me Enough To Let Go
Your hearts are breaking - I know: I can tell
Because you're my parents and I know you so well
As hard as this is, there's something I need to say
I don't want to linger, don't beg me to stay
Keeping me here only gets in my way
Prevents me from being where I want to be
Out of this body and finally pain free
Living with God is my ultimate goal
By taking me home He is making me whole
The only thing holding me back, Mom and Dad
Is thinking of you and the good times we had
You fought for me when no one else could
Refused to give up when others told you you should
You packed a whole lifetime of love in (two) years
Gave me strength to handle all of my fears
Showered me with courage - you said - "It's a loan"
While secretly hiding tears of your own
You've done everything I needed - I couldn't ask for much more
Please love me enough to help me pass through that door
I know you are sad - and it doesn't seem fair
But the time has come to put me in God's care
Since I started the job I was sent here to do
And planted a seed now residing in you
I'm sure I can trust you to carry my load
Please love me enough - enough to let go
- Kathy McElhinny
My Little Angel
Sometimes angels aren't covered in light
Sometimes angels aren't always right
Sometimes angels don't have wings
But nothing compares with the love they bring
My little angel isn't very tall
My little angel hasn't said a word at all
But there's nothing like the sound I hear
When my little angel is drawing near
When my little angel comes around
I feel I can fly, and I'm leaving the ground
All I hear are the beating wings
Baby's cries, but no other things
My little angel sleeps all day
But when he's in my arms, there's nothing to say
His halo is a cow-lick of soft, golden hair
He can't work miracles, but I don't care
My little angel can't walk or talk
But time flies fast, and you race the clock
My little angel won't be little for long
But my angel will never be gone
- Author Unknown
Slow slow children...
Run the race.
Our special children try to pace all they do, all they feel,
to learn to live to become real.
First she tries to count to ten.
Then, she stops and tries, again.
One has learned to lift a spoon.
A task that equals men on the moon.
Another has learned to say a word.
A better sound has not been heard.
And it was he that learned to play
and work with others throughout the day.
With patience and love, he will try
to care for himself, and to get by.
Slow slow children...
How they grow!
Our special children...
What they know!
To love. To give.
For us to live.
- Eleanora N. Gambino, June 26, 1973
Little Angels
When God calls little children to dwell with Him above
we mortals sometime question the wisdom of His love.
For no heartache compares with, the death of one small child
who does so much to make our world, seem wonderful and mild.
Perhaps God tires of calling the aged to his fold
so He picks a rosebud before it can grow old.
God knows how much we need them, and so He takes but few
to make the land of Heaven more beautiful to view.
Believing this is difficult, still somehow we must try
the saddest word mankind knows will always be "Goodbye."
So when a little child departs, we who are left behind,
must realize God loves children, "Angels Are Hard To Find."
- Author Unknown
Growing Pains
My Precious little girl
How my heart ached for you today
when you tried to play with the children.
You sought to win them over with your sunshine smile.
Your sparkling blue eyes expressing the words
your lips are unable to form.
You couldn't understand when your gestures of friendship
were not reciprocated.
I saw your attempts to join in their games - games they played with your toys
which you shared without hesitation.
You stood by on the sidelines watching intently, enthralled with their
every word and action.
When one child fell and began to cry,
you were the one who ran to give her comfort
deeply concerned about her well-being.
And when the children left
you were saddened to see them go.
I cradled you in the safety of my arms until you smiled again.
- Juby Shapiro
It may be six or seven years, or twenty two or three,
but will you, till I call her back, take care of her for me?
She'll bring her charms to gladden you, and shall her stay be brief,
you'll have her lovely memories as solace for your grief.
I cannot promise she will stay, since all from earth return,
but there are lessons taught down there I want this child to learn.
I've looked the wide world over in my search for teachers true
and from the throngs that crowd life's lanes I have selected you.
Now will you give her all your love, nor think the labour vain,
nor hate me when I come to call to take her back again?
I fancied that I heard them say: Dear Lord, thy will be done!
For all the joy thy child shall bring, the risk of grief we'll run.
We'll shelter her with tenderness, we'll love her while we may,
and for the happiness we've known, forever grateful stay;
but shall the angels call for her much sooner than we've planned,
we'll brave the bitter grief that comes and try to understand.
- Edgar A. Guest
Finally my own Poem for my Linabell ~
Oh Baby of mine, I knew from the moment I held you, stars light up
in heaven as you're eyes softly gazed with mine.
The Doctors told me There was complications with you in my womb, but angels
voices stood up for you, those angels led me to you.
Oh Baby of mine so special so bright, but to other's not all is right.
Oh Baby of mine I once longed for the day the doctors would say, here is a pill, she will be just right. But as we grew together I knew you were always okay.
Oh Baby of mine to me so perfect and fine, those silly Doctors what do they know, so what if there is a problem with your genetic code. You still laugh, learn, love, and live, and with some extra help you grow. So you are not the "norm" and you get frustraited when you see how easy it is for others to thrive, and you have to sturggle with everything inside.
Oh Baby of mine, for every tear you shed I have shed one too, and for every triumphant milestone you're family celebrates eagerly with you.
We love you so much our little Baby of mine, you're the rock that we lean too for emapthy, knowledge, and love, of man kind.
Oh Baby of mine, We are so blessed to have you lead as the Big little sister,
the angel with wise eyes. We wouldn't ever change a thing my sweet little Baby of mine.
Oh Baby of mine always be true to thyself, and don't worry about how others look, and sometimes stare, point, and curely joke always know You are a very special individual with you're own unique code.
Oh Baby of mine I knew from the moment I held you stars lit up in heaven as your eyes softly gazed at mine.
To Caroline with love, Love Mommy ( Katie Mac )
The good news is the oral carnitine is really seeming to be helpful for just being on it for 4 days, Linabell is improving on fine motor skills :) Not quite as shakey when holding a pen or pencil :) I am excitied :)
UPDATED GOALS
Helping My Daughter.
Progress 20%
Encouragements: 0
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To give everyone a peak into my world I thought I would write about why I am here my beloved little Linabell ( Caroline )... She is a happy7 year old, whome sturrgles to thrive not only in growth, but also mental abilitys, and cordination. She loves to sing, dance and play princess. She hates to write, has trouble with memory, concentration, and is rather uncordinated.
From the start Linabell has struggled and fought... For now what seems to be her life. She had severe reflux, doctors told me it was normal... Being my first child I thought o.k., She tended to get colicy, but know we know it was due to her carnitine deficency... Again being a knew mom, and my little Linabell being my first child I thought o.k. But around 16 mos she was non-verbal and could not walk.... They told me wait till she is 18 mos... That is when I started to fight for her, my gut instict told me something was off. Finally at 2yrs.... She was still not talking, so I started speech therapy with her at home while waiting for refereals to finally go through. We started by simply making faces to stregthen her facial muscles. That helped a lot. Then finally a refferal went through for speech... Caroline was 3 1/2 yrs old at this point... She went for roughly a year in a half. Basically she was dropped because it was an atriculation problem... I fought to get a genetics appointment... First time I got the run around by a UN-QUALIFIED employee of Tri-care... In my blunt personal opinion, the woman was rude & I think boldly lied when I called to see if we had authoriziation. BUT as time grew I realized that most of the Commonwealth of Virgina was widely disorganized, except for two systems... Well-Fair.. And Lower Income housing... Unfortunatley for us, those issues were not our problem. So Virgina was letting Caroline slide into the cracks. Finally at age 6 after 6 years of fighting a authorization got through to tricare for genetics.... It took e getting the doctor involved, but it happend.... So we began Tests.... FOR EVERYTHING you could think of... Although much to my dismay, the genetics doctor out there seemed more interested in Carolines short stature than really anything else... Well Scott got orders to Oregon in this time frame... We let Caroline stay out in VA with my Mother & Father to finish up the tests. And finally she finished up and Joined us in OR.... Well I hadn't heard anything from the gentics doctor as far as results... So natrually I started calling to see if any results had come back.... I was told by an ordinary office receptionist with no M.D. or even nursing degrees that "Caroline just has a slight vitamin defeciency" just be sure to give her flintstones everyday. SO with that knowledge we saw her new PCM out here... AND the ball started rolling.... Carolines Doctors appointment with a genetics follow up is in June... But the SHOCKER that really frosted my rear was when Tri-Care West got a group called echo involved to make her an exceptional family member, they went through all diagnosis that they had in her files... And the so called slight vitamin deficency was PRIMARY CARNITINE DEFICENCY.... WHAT the hell?.... The doctors in VA failed to tell me this.... Now after doing my own research I realize how potentially fatal this can be... Ad what really makes me angry is the fact that with screening as an infact and being put on L-Carnitine she could have had a devlopmentally normal life... I got the phone call 3 days ago from a case worker for Tri-Care whom found the actual diagnosis from the Genetics Doctor in VA... He right away notified me & Carolines PCM out here ! I am furious the doctors in Virgina failed my daughter... I could go on and on about how horrible that commonwealth is.... Butinstead I plan to focus my attention on helping my helpless daughter. Her Doctor out here is on the ball and I cannot praise her enough ! By just reading the papers that Tri-Care West faxed into her office and listening to what I told her the Nusre from Tri-west told me, she started Caroline on Oral Carnotor, and we are going back for a full genetic work up again on June 2nd. This time with a more knowledgeable doctor of genetics who will not treat Linabells disorder as a "Fairytale Disease" because it is so rare.
My only hope for Linabell is that she does not further diblitate and thrives as well as she can.. And that my new cause for Linabell and those like here is to push for mandatory screening in all states, and furthering the education of Carnitine Deficency I & II. The problem I see is that like Doctors in VA... They are blinded by they're own arrogance, and without parents that fight, as long and drawned out as it takes, it worry's me for the future of kids. NEVER take a "so/so diagnosis" Just keep pushing! Just because a doctor has a specialized degree in medicine, does not mean they have the right to dismiss information that can be life changing.
