~ Susan Guy ~
(Keep her in your prayers please.)
So much is talked about the rainbows after the storms. But what it doesn't talk about is the damage left by the storms. Someone has to clean that up and rebuild. Even once the journey has begun, storms will often hit. Often without any warning. During the storm, all that you are doing is going through it day by day, minute by minute praying you survive mentally, if not physically as well. These storms can last a very short time to years and years.... The severity varies greatly. Sometimes you have light to guide you during these storms, sometimes not. The light varies in brightness as well. Sometimes the storms are just rain and sometimes it's a category 5 hurricane.....
Today I felt a storm hit. I have known it was coming being that my children have MRI's and stuff soon but I didn't expect to have to fight insurance again already..... We are going to suffer for it this time.... Hopefully by my son's surgery it will be settled... I hope... Honestly I'm freaked out a little but it all works out.... It has to.... I'm trying to keep the faith... The hardest thing in the storms is to still hear God's voice through the roar of the storm....
"I was sure by now God you would have reached down
And wiped our tears away,
Stepped in and saved the day.
But once again, I say amen
That it's still raining
As the thunder rolls
I barely hear your whisper through the rain
I'm with you
And as your mercy falls
I raise my hands and praise
The God who gives
and takes away"
Right now I'm not sure what God is trying to say other then to be patient..... I got that hint while checking e-mail yet again today waiting for our schedule of appointments ahead..... PATIENCE ISN'T A STRONG SUIT YOU KNOW!!! :) What I fear the most on this part of it is how it all will be covered..... One can't get blood out of a turnip. I know my children are in good hands though. Besides, this momma knows how to roar like a good old momma bear. It's not the first or the last time I have had to roar to get things done....... I admit I'm a worry wart who is an anal miss-plan-it, must have a plan A-Z and have things DONE early. Gee, I wonder why I am that way! Because I have to be and things don't get done by clinics and insurance otherwise!! (I'll shut up now. lol)
As hard as it is sometimes, we have to toughen up too.... Yet we have to have time to let our guard down and rest from the battles of everyday life.... That's harder sometimes.... Finding rest when we feel like we always have to be ready to fight, defend and carry on no matter what.... Many of us wonder what true REST is.... Yet God tells us to find rest in Him.... Shutting up my mind of thoughts is the hardest part in doing that....
By: Melissa Whitney - I think
Based on Psalm 37:7, "Rest in the Lord, and wait patiently for him..."
Often we are tried and troubled
Many a care have we;
Jesus knows each thought, each feeling,
He sees what we can’t see.
He knows that every flame He sends
Will only purify;
Every flood can wash us clean
When He is by our side.
Rest in the Lord; wait patiently for Him
He will be your light when the way has grown dim
Rest in the Lord; wait patiently for Him
He will guide you, walk beside you
Just trust in Him.
When we cannot see why
A problem must arise
Jesus knows the end will make it
Worth our flooded eyes
He works each circumstance together
As part of His wise plan
He only asks we trust Him fully
And, by His grace, we can
Rest in the Lord; wait patiently for Him
He will be your light when the way has grown dim
Rest in the Lord; wait patiently for Him
He will guide you, walk beside you
Just trust in Him.
Things and people change
Though we wish they’d stay the same
Jesus is the only one
Who doesn’t ever change
He’s always there to lead and guide us
Be our faithful friend
His love can never, ever fail
He’ll be with us to the end!
So rest in the Lord; wait patiently for Him
He will be your light when the way has grown dim
Rest in the Lord; wait patiently for Him
He will guide you, walk beside you
Just trust in Him.
Written January 2005
Yet trying to get others to understand our journey sometimes is at least half the battle.....
http://www.theguardian.com/lifeandstyle/2013/aug/16/children-disabilities-special-needs-mumsnet-campaign
"Amanda Marlow, 43, who lives in Milton Keynes, says she has survived by growing a skin so thick she doubts anyone's disapproval could penetrate it. "Sometimes I think if I marched through the shopping centre with 'F off' written on my forehead, I couldn't be more obvious about it," she says.
She has four children, twins Elizabeth and James, 13, Oliver, seven, and Alex, six. Elizabeth has Treacher Collins syndrome (which causes craniofacial abnormalities); James has Asperger's syndrome and Alex has severe autism.
"What I'd like people to understand," she says, "is that these are my children. This is my life. It's not a bed of roses, but we try to make the best of every day. What would be nice is if people were kind and considerate once in a while, and gave us a bit of space. We're dealing with issues that most people haven't got a clue about, and it's intrusive when you get someone coming up to you and saying, he needs a clip round the ear when one of them has a tantrum."
If Amanda, Claire and Jane could ask the rest of us to do just one thing, it would be to stop staring. "It's fine to do a double take, but once you've taken in that our children have a disability, get on with what you're doing. It doesn't give you the right to gawp," says Claire.
Beyond staring, what angers Amanda is when strangers ask about Elizabeth. "They say, what's wrong with her? And I say, nothing's wrong with her. She's fine."
"Claire agrees: it's not a tragedy, she says, that her child has a disability. "We don't need pity; we're a very happy family and we just want to get on with our lives. I hate people calling me 'special' or thinking I somehow have extra qualities that enable me to deal with all this. The truth is that when it happened to me, I thought I couldn't cope.
"But a very wise person said to me: 'You'll cope because you have to.' And that's what anyone would do. Calling us 'special' or alluding to our great qualities makes us different, sets us apart, and we don't want that at all."
These and I would say the other huge thing many families face is the financial hardship. So many rely on Medicaid or similar programs.... Also being a special needs family is isolating. But also you learn about so many more families like you. Too often you only learn of these families via social media like Facebook. We are not alone though.....You may feel alone where you live, especially if you don't know many other families but you are far from alone in the world..... (I have to remind myself of this OFTEN as well....)
What I Would Tell You
I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention; I’ve grown accustomed to the curious eyes of onlookers. Our daughter was born seven and a half years ago, and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to — they just didn’t unfold in the way we’d imagined or planned.
I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day — the car ride home. Cerebral palsy can turn a car seat into a torture chamber.
I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume the man sitting next to you, looking equally tired and shocked, was your husband.
I made my way toward the doors, and as I passed you, our eyes met and I smiled at you. You smiled back, and for a moment I knew you knew I understood.
If I could, I would tell you — although you might not believe it right now — you will be OK. I would tell you to dig deep within yourself because you will find the strength and resilience somehow, and it will surprise you. I would tell you to honor your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.
I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.
I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all the services and resources available. Find someone who can learn how to care for your child so you can have breaks and so you and your partner can go on dates — even little ones like a 20-minute stroll outside holding hands, sharing wine on the deck or even catching a movie.
I would tell you that you know your child best, and no matter what you’re told by the doctors and other professionals, you know the answers. You will teach them about your child. At times you will question the validity of your intuition, but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.
I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy, and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so you can stay healthy in your mind and spirit.
I would tell you to seek out other mothers like yourself. This is, indeed, the road less traveled, and you will feel alone along the way, especially in the company of healthy children and their parents. Yes, you will feel isolated, but know we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.
I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but don’t let the internet overwhelm you. Having some trust in what your child’s specialists tell you can be grounding. Other mothers and fathers of children like ours can be a wealth of information.
I would tell you this isn’t an easy life. It’s tough, there’s no doubt about it, but you’re capable, and the rewards are great. You may never see your child graduate from a university, walk down the aisle or give birth to your grandchildren, but you will feel pure joy when your child laughs for the first time. You will celebrate the moment when you connect with your nonverbal child. You will call your spouse at work to tell him that she has gained 4 ounces because weight gain is always a struggle with our children.
I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.
I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy, but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.
I would tell you that others will not get it. They can’t. This is a unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile, but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bull.
I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts, and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.
I would tell you that grief will creep up on you after years have passed and you least expect it, like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.
I would tell you that you will recognize her because she is you from seven and a half years ago. And you will want to run to her and hug her and tell her that everything will be OK. You will want to save her from the pain and the hardship and the unknown.
But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you will smile at them and walk by. They have their own path to travel, and it will be different than yours. It may be longer or shorter. It may be more or less complicated.
I would tell you that this mother’s searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.
Julie Keon
June 29th 2011
Lost
By : Carol Andrews
11-7-14
I could feel you within my heart
but the storms in the night pulled you away from me.
I called out your name but I can't speak above the thunder.
The rain is pouring out, beating upon my ravaged soul.
I reach for you but you aren't there.
I know you are out there but you are far away from me.
I can't feel you beside me now.
Where are you now?
Are you lost, or is it me?
Will I find you again?
I feel alone in the darkness without you.
I know I will see you again but when?
I can barely hear you with you so far.
Are you still in this storm or are you on shore?
If you are looking for me, leave your footprints on the midnight shore.
I may someday find you again.
Are you searching for me?
Can you see the storm tearing me apart at sea?
Will I ever find shore again?
As the night grows darker, the more blind I am.
In faith I step out toward my heart.
I am falling into despair.
The storm is drowning me to the eternal darkness.
To the place where eternal dreams are nightmares.
As I take my last breath I plea to you.
"Save me!" I whispered, as the darkness drowns me.
I look up and you are grasping the hand that is above my head.
I feel you pulling me up from the depths of hell.
I feel your strong grip as you shield me from the storm.
"Where were you Lord when I needed you?"
"I was there, you only had to call out to me."
Inspired from the song Hymn for the Missing by RED
Let's see how it all goes....
~ Special Momma ~
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