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
Amen!! That's the best way I could put that! I have seen this myself. Some days I have the guts to introduce myself and share our story, some days I admit I don't. The way Arkansas Children's is set up with the neuroscience center, it's hard to see who is with what clinic. It's almost set up like an ER where you have the nurses station and rooms but several doctors in each area. You don't know specifically what specialty other then neuro related. Yet like the ER, you know you could be there for a while. We have had that happen with seeing the kids' neurosurgeon. This was way before my son was born. Yet I try to be patient knowing that we have been that patient before too. At least I was when I had to get an unplanned c-section with my son.
On this journey, you see so many faces. So many families labeled by a diagnosis. Yet what many don't see is the people behind those labels. I see new faces every time we are at one of our three children's hospitals and at the Ronald McDonald house in Dallas. Though you also soon learn who the frequent flyers are as you become one of them. Our lives do revolve around appointments and our children but what does get hard is not letting that consume us.
Yet everything said here sometimes is still hard to do. Some days you wake up and are ready to go and fight. Other days it's like, "Bring on the coffee and I'm staying in bed!" kind of days. Our children need us. If we won't fight for our kids, who will? Honestly! If we don't, who will?
The question was asked with the link I got the original post from was this: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself?
I would tell myself first of all to pace myself. Don't sprint through this marathon or you break down before the first mile is done. The journey will last until our time is done on Earth. Period. I would also tell myself to NEVER be afraid to be assertive and speak out when you feel things are not going right BUT to be tactful and kind too. Switch doctors if you need to even if they say you can't. YOU are the parent, not them. When it comes to clinics and insurance, usually the person you are talking to directly is just a middle man and has likely dealt with enough nasty people for one day, so stay nice but firm. The three biggest pieces of advice though would be this:
1. Keep your faith in God even when you get mad at him.
2. Don't be afraid to ask for help but also understand that most will never understand where you are and most of the friends you had will change to new ones. Help each other.
3. Never stop fighting for your children, even if you are the only warrior facing Goliath.
Sorry for the word in here but I had to share, speaking of fighting for our kids.
I apologized
to a nurse last night as I headed out of the ER for being grouchy and inpatient about getting my
son looked at. (He's fine by the way other then fever but that will be
gone soon too.) I had to keep being persistent about getting my son seen, even after being in the waiting room six hours before getting anywhere beyond triage. It was a busy night but still... The nurse knowing at least some of our story with the
children said, "You are totally fine. I have worked here eight years and know an asshole when I see one and
you are not an asshole. I don't see a bone in your body that would act like one, just a concerned parent who has seen a lot." My
response? "*chuckle* I'll remember your words the next time I have to
fire a doctor from seeing my kids." He just laughed and we went our separate ways.
After a night of maybe four hours of sleep if lucky, I'm going to call this post good and I'll see you on the next one!
Cheers!
~ Special Momma ~
Wednesday, January 21, 2015
Thursday, January 15, 2015
Children
"How many children do you want?"
"Are you going to have more children?"
"You already have one special needs child, why want another?"
"You will really be busy now that you have two special needs kids."
"Mommy, I want a sister."
"Are you done having children?"
And the list can continue.
Not long ago, we have been working in a lesson book in Sunday School. There was a verse in it talking about how children are to be shot into the world like arrows. Blessed is the man who has his quiver full. I didn't say it right but you get the picture. Since that lesson, I have been thinking long and hard really about what that means.
The notes I took for that lesson was how God gave us our children for the great commission for one. The ultimate mission isn't to protect our children but to let them become what God wants them to be. Let go and watch them do God's mission. The earlier we teach them, the more likely they will. Are we willing and eager for our children to do God's calling for them no matter the costs?
Society sees children as a burden, especially financially. I can definitely see how society would see that. It's hard work! The purpose of kids is to extend God's mission field, not to bring attention to us. Often anymore it's about what our kids can do for us. I don't mean just working around the house while we watch type thing. How many sports do they play in? Drama club, cheerleading, basketball, volleyball, etc. Are they in that because THEY want to be or because YOU insist and two, are you using your children as a way to brag on yourself? "My son does this, this, this and this. What about yours?" type thing.
Raising kids is one of the greatest blessings you can have. Really.
The final question then was: How many kids does God want you to have, not what YOU want to have?
Let's be real here: Most of us say one or two. When I first married my husband, I said no more the three. I am not yet 33 and I have two living children and one angel from a miscarriage in between the two. My daughter who is seven is currently wanting a sister despite having a seven month old brother. To make that "worse", she teases about wanting twin sisters. Yeah, you read that right! Thanks a lot Jacque!! ;-) Yet even I let what society thinks, get the better of me. How? Honestly?? Financial being the biggest one, especially with having a young one in diapers for at least another 18 months. Two, I want to enjoy my son being young, not feel like I'm going to have two "babies" at once. And honestly for three, my own fears.
I figured after finding out I was pregnant with my son, we were done. Period, end of story. DONE! Main reason being because of the risks of the craniofacial issues arising. It was 50/50.... Both of my living children have that as a primary diagnosis. So given that, the first thing I think of when I'm asked if we are having anymore children, "I can't take that risk." Yet that is ME talking, not God.
So therefore, how many children does God want me to have? I have no idea. I'm not as young as I used to be and my clock is ticking. Yet society says no. Do I honestly know what to think currently? No..... I know unless God does something drastic (Which He is perfectly capable) no more children out of me for a while certainly and honestly likely ever. It's not that a part of me doesn't want just one more, it's that I don't know what I would do if we hit the "genetic lottery" a third time. Technically fourth. I don't know what if anything my angel had. Though someday both of my children will ask me why we didn't have anymore children. For a long time I debated how I would ever answer something like that. At least now I can say that God chose for us to have or not have anymore kids.
My job as a parent, especially a special needs parent is to raise my children to have a relationship with God first but also to grow up in this cruel and dark world as a light of hope. Hard for sure but that's my job. It took five years on this journey to see the opportunities to share light in this dark world within the realm of where God has me at. I don't to this day honestly see it everyday but I do see it, mainly while on or trips for "biggie" appointments. My daughter has despite the "financial and emotional burden" society says I have, been very blessed. She has gone viral before, met Sonny Sandoval and his band P.O.D twice, and more. Because of where this journey has taken us, she is where she is today. My son, no telling what blessings he will get. Likely not the same ones as my daughter but likely just as good if not perhaps better.
As hard as children are to raise in this cruel, dark and perverse world, most days I could honestly say, I wouldn't have it any other way. I just wish God didn't trust me so much sometimes.....
Cheers!!
~ Special Momma ~
Craniofacial t-shirts for sale! Check it out!
"Are you going to have more children?"
"You already have one special needs child, why want another?"
"You will really be busy now that you have two special needs kids."
"Mommy, I want a sister."
"Are you done having children?"
And the list can continue.
Not long ago, we have been working in a lesson book in Sunday School. There was a verse in it talking about how children are to be shot into the world like arrows. Blessed is the man who has his quiver full. I didn't say it right but you get the picture. Since that lesson, I have been thinking long and hard really about what that means.
The notes I took for that lesson was how God gave us our children for the great commission for one. The ultimate mission isn't to protect our children but to let them become what God wants them to be. Let go and watch them do God's mission. The earlier we teach them, the more likely they will. Are we willing and eager for our children to do God's calling for them no matter the costs?
Society sees children as a burden, especially financially. I can definitely see how society would see that. It's hard work! The purpose of kids is to extend God's mission field, not to bring attention to us. Often anymore it's about what our kids can do for us. I don't mean just working around the house while we watch type thing. How many sports do they play in? Drama club, cheerleading, basketball, volleyball, etc. Are they in that because THEY want to be or because YOU insist and two, are you using your children as a way to brag on yourself? "My son does this, this, this and this. What about yours?" type thing.
Raising kids is one of the greatest blessings you can have. Really.
The final question then was: How many kids does God want you to have, not what YOU want to have?
Let's be real here: Most of us say one or two. When I first married my husband, I said no more the three. I am not yet 33 and I have two living children and one angel from a miscarriage in between the two. My daughter who is seven is currently wanting a sister despite having a seven month old brother. To make that "worse", she teases about wanting twin sisters. Yeah, you read that right! Thanks a lot Jacque!! ;-) Yet even I let what society thinks, get the better of me. How? Honestly?? Financial being the biggest one, especially with having a young one in diapers for at least another 18 months. Two, I want to enjoy my son being young, not feel like I'm going to have two "babies" at once. And honestly for three, my own fears.
I figured after finding out I was pregnant with my son, we were done. Period, end of story. DONE! Main reason being because of the risks of the craniofacial issues arising. It was 50/50.... Both of my living children have that as a primary diagnosis. So given that, the first thing I think of when I'm asked if we are having anymore children, "I can't take that risk." Yet that is ME talking, not God.
So therefore, how many children does God want me to have? I have no idea. I'm not as young as I used to be and my clock is ticking. Yet society says no. Do I honestly know what to think currently? No..... I know unless God does something drastic (Which He is perfectly capable) no more children out of me for a while certainly and honestly likely ever. It's not that a part of me doesn't want just one more, it's that I don't know what I would do if we hit the "genetic lottery" a third time. Technically fourth. I don't know what if anything my angel had. Though someday both of my children will ask me why we didn't have anymore children. For a long time I debated how I would ever answer something like that. At least now I can say that God chose for us to have or not have anymore kids.
My job as a parent, especially a special needs parent is to raise my children to have a relationship with God first but also to grow up in this cruel and dark world as a light of hope. Hard for sure but that's my job. It took five years on this journey to see the opportunities to share light in this dark world within the realm of where God has me at. I don't to this day honestly see it everyday but I do see it, mainly while on or trips for "biggie" appointments. My daughter has despite the "financial and emotional burden" society says I have, been very blessed. She has gone viral before, met Sonny Sandoval and his band P.O.D twice, and more. Because of where this journey has taken us, she is where she is today. My son, no telling what blessings he will get. Likely not the same ones as my daughter but likely just as good if not perhaps better.
As hard as children are to raise in this cruel, dark and perverse world, most days I could honestly say, I wouldn't have it any other way. I just wish God didn't trust me so much sometimes.....
Cheers!!
~ Special Momma ~
Craniofacial t-shirts for sale! Check it out!
Friday, January 9, 2015
Salvation
The Oak Treeby
Johnny Ray Ryder Jr
A mighty wind blew night and day
It stole the oak tree's leaves away
Then snapped its boughs and pulled its bark
Until the oak was tired and stark
Johnny Ray Ryder Jr
A mighty wind blew night and day
It stole the oak tree's leaves away
Then snapped its boughs and pulled its bark
Until the oak was tired and stark
But still the oak tree held its ground
While other trees fell all around
The weary wind gave up and spoke.
How can you still be standing Oak?
The oak tree said, 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'm stronger than I ever knew
There are days I feel that and days I don't... Just being honest. My last post I didn't, today I do. Mostly. We had another pain clinic appointment for my daughter today. Once a month we drive three hours one way to do these. It gets exhausting. Yet blessings are in our trips too. Our famous view of Little Rock.
We were also the customer of the day at the Chick-Fil-A we always stop at once in our trips. I know half of them by name in there and most of them know who we are. Yet the day in and day out of many days is tiring. Though my children are sooooo worth it.
A friend and advocate tagged me in a post tonight on Facebook. I will share the link but here is an excerpt.
"How do you accept the fact that , although normal is a very ambiguous term, in the mainstream way of thinking she will never be normal. Most kids get a last minute-invite to a sleepover and their biggest concern is whether or not the host has a spare toothbrush for them to use. Well, at least the parents worry about that. Not my kid . . . or yours. Toothbrush? Check. List of restricted foods? Check. Vitamins and supplements separated into individual baggies with dosing times/instructions? Check. Nebulizer? Check. Compression vest? Check.
“Oh wait! In the rare event you are actually invited, you can’t sleep at anyone else’s house, because we chelate every three hours around the clock on weekends. Oops. Sorry honey.”
She might just be onto something when she wishes for normalcy. This would allow her to experience and enjoy all the daily events that most take for granted. I could watch with pride, instead of worry and panic. Most days I have accepted that this is the path we were meant to take. I just have to wonder, was it really necessary?
Another day, another loss."
Yet for us, being on the road brings thoughts. The hours driving, music playing and yet thoughts flow like a river. my mind wasn't going all over on the way to Children's more so as it was on the way home. Though while at Chick-Fil-A, I was reminded how sometimes a certain smell will bring much back. For me and I'm sure most of you, different sounds, smells or other things will bring back memories. Certain beeps, smells and other sounds bring different times of this medical journey into my head. Today it was a smell that reminded me of the Ronald McDonald House in Dallas. Medicinal smell. Yet in a way, it's comforting yet all too familiar. A familiarity that is fast approaching as we soon go back to Dallas, this time for both of my children. Time away from their friends and this summer as families go on vacations or children hang out with their friends, I will be watching my young son face his first surgery and his sister, who has been there twice just for this type, will for the first time be on this side of it. I am not looking forward to that whole thing at all..... Yet it has to be done.
Our losses may not be necessary, at least how WE see it but it could be worse. A lot worse. So worse that there are two special needs families who will say goodbye to their children this coming week as they are laid to rest. Something my daughter has seen herself. Loss. There are families we have met over the years on our journey that were torn apart because of loss, not always death either.
Yet no matter how dark it really does get, light is there. Salvation is there. We just have to hang in there and hope for the best..... "Fear can sometimes creep into my heart and steal my focus away from having faith. I'm learning the first step to stop fear is to acknowledge it. Then overpower fear with prayer and God's Truth." ~ Lysa TerKeurst ~
Listened to this the last hour on the way home today. I feel like I drive that on autopilot now, especially when pain clinic sees little miss once a month..... I often get songs stuck in my head and this one officially is now.
Salvation by Skillet
All alone, lost in this abyss
Crawling in the dark
Nothing to wet my longing lips
And I wonder where you are
Are you far?
Will you come to my rescue?
Am I left to die?
But I can’t give up on you
I feel you keeping me alive
You are my salvation
Touch you, taste you, feel you here
Oh oh, yeah yeah
I feel you keeping me alive
You are my salvation
Hold me, heal me, keep me near
Oh oh, yeah yeah
My heart will burn for you
It’s all I can do
Salvation
Salvation
(Keeping me alive)
Salvation
(You’re keeping me)
Salvation
(You’re keeping me alive)
Been out from under who I am
And who I want to be
Held you tightly in my hands
Why are we unraveling?
Was it me?
Will you come to my rescue
Or did I push to far
When I turned my back on you?
I feel you keeping me alive
You are my salvation
Touch you, taste you, feel you here
Oh oh, yeah yeah
I feel you keeping me alive
You are my salvation
Hold me, heal me, keep me near
Oh oh, yeah yeah
My heart will burn for you
It’s all I can do
Salvation
Salvation
(Keeping me alive)
Salvation
Touch you, taste you, feel you, need you
Give it all just to find you
Hold me, heal me
I will find you
Keeping me alive
You are my salvation
Touch you, taste you, feel you here
Oh oh, yeah yeah
Our love will never die
You are my salvation
Hold me, heal me, keep me near
Oh oh, yeah yeah
My heart will burn for you
It’s all I can do
Salvation
Salvation
Touch you, taste you, feel you, need you
Salvation
Driving down I-40, there is an area where above a cliff, at night you see a cross illuminated. Driving home today it was already totally dark, yet that cross could be clearly seen. White as snow in a black sky. As much as late appointments annoy me, if I wasn't driving home in the dark, I would not see that as a reminder to always keep the faith, no matter how hard or how dark it sometimes gets. I often wonder why God chose for my two children to deal with what they do yet I think they both will be stronger for it and yet will always know they have the other one to understand. At least if they were both having to face this journey, I pray that they never feel alone in it..... Yet a part of me wonders if the child I had miscarried was here, what journey would he/she be on?
kaydat.deviantart.com
I'm exhausted so I'm calling it a night.
Cheers!
~ Special Momma ~
While other trees fell all around
The weary wind gave up and spoke.
How can you still be standing Oak?
The oak tree said, 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'm stronger than I ever knew
There are days I feel that and days I don't... Just being honest. My last post I didn't, today I do. Mostly. We had another pain clinic appointment for my daughter today. Once a month we drive three hours one way to do these. It gets exhausting. Yet blessings are in our trips too. Our famous view of Little Rock.
We were also the customer of the day at the Chick-Fil-A we always stop at once in our trips. I know half of them by name in there and most of them know who we are. Yet the day in and day out of many days is tiring. Though my children are sooooo worth it.
A friend and advocate tagged me in a post tonight on Facebook. I will share the link but here is an excerpt.
"How do you accept the fact that , although normal is a very ambiguous term, in the mainstream way of thinking she will never be normal. Most kids get a last minute-invite to a sleepover and their biggest concern is whether or not the host has a spare toothbrush for them to use. Well, at least the parents worry about that. Not my kid . . . or yours. Toothbrush? Check. List of restricted foods? Check. Vitamins and supplements separated into individual baggies with dosing times/instructions? Check. Nebulizer? Check. Compression vest? Check.
“Oh wait! In the rare event you are actually invited, you can’t sleep at anyone else’s house, because we chelate every three hours around the clock on weekends. Oops. Sorry honey.”
She might just be onto something when she wishes for normalcy. This would allow her to experience and enjoy all the daily events that most take for granted. I could watch with pride, instead of worry and panic. Most days I have accepted that this is the path we were meant to take. I just have to wonder, was it really necessary?
Another day, another loss."
Yet for us, being on the road brings thoughts. The hours driving, music playing and yet thoughts flow like a river. my mind wasn't going all over on the way to Children's more so as it was on the way home. Though while at Chick-Fil-A, I was reminded how sometimes a certain smell will bring much back. For me and I'm sure most of you, different sounds, smells or other things will bring back memories. Certain beeps, smells and other sounds bring different times of this medical journey into my head. Today it was a smell that reminded me of the Ronald McDonald House in Dallas. Medicinal smell. Yet in a way, it's comforting yet all too familiar. A familiarity that is fast approaching as we soon go back to Dallas, this time for both of my children. Time away from their friends and this summer as families go on vacations or children hang out with their friends, I will be watching my young son face his first surgery and his sister, who has been there twice just for this type, will for the first time be on this side of it. I am not looking forward to that whole thing at all..... Yet it has to be done.
Our losses may not be necessary, at least how WE see it but it could be worse. A lot worse. So worse that there are two special needs families who will say goodbye to their children this coming week as they are laid to rest. Something my daughter has seen herself. Loss. There are families we have met over the years on our journey that were torn apart because of loss, not always death either.
Yet no matter how dark it really does get, light is there. Salvation is there. We just have to hang in there and hope for the best..... "Fear can sometimes creep into my heart and steal my focus away from having faith. I'm learning the first step to stop fear is to acknowledge it. Then overpower fear with prayer and God's Truth." ~ Lysa TerKeurst ~
Listened to this the last hour on the way home today. I feel like I drive that on autopilot now, especially when pain clinic sees little miss once a month..... I often get songs stuck in my head and this one officially is now.
Salvation by Skillet
Isaiah 53:5-6
All alone, lost in this abyss
Crawling in the dark
Nothing to wet my longing lips
And I wonder where you are
Are you far?
Will you come to my rescue?
Am I left to die?
But I can’t give up on you
I feel you keeping me alive
You are my salvation
Touch you, taste you, feel you here
Oh oh, yeah yeah
I feel you keeping me alive
You are my salvation
Hold me, heal me, keep me near
Oh oh, yeah yeah
My heart will burn for you
It’s all I can do
Salvation
Salvation
(Keeping me alive)
Salvation
(You’re keeping me)
Salvation
(You’re keeping me alive)
Been out from under who I am
And who I want to be
Held you tightly in my hands
Why are we unraveling?
Was it me?
Will you come to my rescue
Or did I push to far
When I turned my back on you?
I feel you keeping me alive
You are my salvation
Touch you, taste you, feel you here
Oh oh, yeah yeah
I feel you keeping me alive
You are my salvation
Hold me, heal me, keep me near
Oh oh, yeah yeah
My heart will burn for you
It’s all I can do
Salvation
Salvation
(Keeping me alive)
Salvation
Touch you, taste you, feel you, need you
Give it all just to find you
Hold me, heal me
I will find you
Keeping me alive
You are my salvation
Touch you, taste you, feel you here
Oh oh, yeah yeah
Our love will never die
You are my salvation
Hold me, heal me, keep me near
Oh oh, yeah yeah
My heart will burn for you
It’s all I can do
Salvation
Salvation
Touch you, taste you, feel you, need you
Salvation
Driving down I-40, there is an area where above a cliff, at night you see a cross illuminated. Driving home today it was already totally dark, yet that cross could be clearly seen. White as snow in a black sky. As much as late appointments annoy me, if I wasn't driving home in the dark, I would not see that as a reminder to always keep the faith, no matter how hard or how dark it sometimes gets. I often wonder why God chose for my two children to deal with what they do yet I think they both will be stronger for it and yet will always know they have the other one to understand. At least if they were both having to face this journey, I pray that they never feel alone in it..... Yet a part of me wonders if the child I had miscarried was here, what journey would he/she be on?
kaydat.deviantart.com
I'm exhausted so I'm calling it a night.
Cheers!
~ Special Momma ~
Friday, January 2, 2015
Reality
This won't be one of my pretty posts so be warned.....
"Your son has what your daughter has." I already knew it when I first saw him and the last ultrasound I had showed most likely.
I'll tell you though, yes I knew the risk when I found out I was pregnant with him. I got that pregnancy test positive on the day that my angel baby would have been due. My 5th month of pregnancy, I had a dream about my son. I didn't know his gender yet but in the dream a voice told me, "He will prepare the way." My daughter, in my 5th month of pregnancy with her, I had a dream that a beam of light shined onto my belly and a voice said, "You are anointed."
I remember both dreams clearly. Very clearly. Little did I know what we would face....
Little did I know eight years later after I had the dream about my daughter, where we would be. Little did I know how blessed yet sometimes cursed I would feel. Blessed because I have two mostly healthy children and one angel baby. Yet cursed in a way because of the struggles...
I hear it all the time that we are blessed. Yes, I have my husband, my children, a home and transportation. Yet the reality is that I don't know what we face ahead. Just earlier today I told my husband (Not where the kids could hear me!) that I feel like what we deal with now is my atonement. He often tells me our budget can't make it. I often hear how tight things are and that now we have the house, we have to cut the budget even more. He's talked of finding a second job, one that will give him no more then 16 hours a week more. Any more then that and we lose SSI and Medicaid for my daughter and would likely lose Medicaid for my son too. The primary insurance is nowhere near enough to cover what has to be. Forget the appointments for a minute. Just the meds she has to have a month, would be easily 300. That's just for my little monkey. No telling what Mr. Froggie will be. Now add in deductibles, co-pays and all of that to doctors. In a surgery year, we would owe at least 100,000 in all medical costs that year. Not prescription costs, that's easily another 3,000. That's just accounting for my daughter. In a non surgery year, it would be about 20k for only medical. Who can come up with that??? That is with the primary insurance but without Medicaid. So we lose Medicaid, we are in deep trouble. These numbers don't account for food, gas and lodging that trips to Little Rock and Dallas require. So yeah, that's always over our heads.
You know what? This is the reality for many like us. This is our Holland. Now, you may be thinking, "Why not have fundraisers?" There are some, even locals who have for various things and raised money. We are not fortunate. In seven years, I have had four I have tried. The first I had jars out when my daughter was first diagnosed with her craniofacial. In six months of those being out, we got about 3,000. That lasted a little bit. Up till the last couple of years we were able to set some money aside. Not anymore. Not in a good while. Yet the medical journey doesn't stop. Traveling still has to be done and bills need paid. The last three fundraisers, the last one being six months ago all flopped. Didn't even raise anything in two of them, the third one got $10. That's it. Yet life goes on, right?
My daughter goes to Little Rock this week for the pain clinic. It's for her migraines. We are supposed to do that once a month, sometimes once every two months. Little Rock is 2.5 hours driving one way. Dallas is about six one way. I'm having to face the reality that I am going to have to tell the pain clinic that we either space the appointments out more or cancel entirely because we can't keep up. This has been coming down the pike for a good while now but with us in the house and more utilities with it, I don't see options. What will that mean? Increased and or more severe headaches that my daughter gets. Her headaches average about three to four a month currently, severity varies. Yet what choice is there? What will the reality be for my son as he gets older as well? I just don't know yet.... We have also faced the reality that depending on insurance issues, we may lose the team in Dallas that cares for both of my children.... Then what? Hope and pray I find a trustworthy team that can and that accepts our insurance..... Yet also risk more....
Those who don't walk a journey like this don't have to make tough choices like that.... Life in reality is full of tough choices for everyone. It's honestly full of miracles too. I wouldn't change it, mostly..... Perhaps it is though my children that others will learn love and acceptance as well. Judge by appearances and disabilities less and love for the inside more.
Despite how ugly life is sometimes, I am blessed that I have what I do. Just sometimes though, I wish we could better afford what my children and we need. Yet life is what it is. The hardest part sometimes is looking out, seeing that others get what they need, fundraise more then enough to cover medical costs but others are left with the reality of bankruptcy..... We are not to that point yet but what truly scares me, we are not far from it at all.... Medicaid gets lost and or we lose my daughter's SSI, that would be our reality. Then what??
As beautiful as riding the cliff edge can be in a journey like this of special children, knowing the fall would likely happen, is what makes a journey like this terrifying.... For some it's even not knowing if their child will survive to the next day.... For many, we also ride the fiscal cliff edge.... Knowing that because of money my children won't get all of the care they need hurts. What kind of mother does that make me??? Some of the stories I read about really makes me wonder how are some deserving of the care therefore can afford it easily yet others can't? How is it that some children out there are denied a chance at life because someone thinks they don't have much of one anyway so why bother?? Who decides that crap?! Who decides who is "worthy" of care and who isn't?
What makes some think they are God and decide who is worthy of life let alone a fair chance? When did this pathetic society get to the point that clinics and hospitals would rather decide who of their patients they can make the most money off of and forget the rest? When did we get to the point that regarding human life, no matter how poor or disabled were less valuable and worthy then turning a profit? When did we get to the point that insurance dictated everything, including who lives and who doesn't, and truly the only reason they exist is to also make profit. It has nothing to do with truly wanting to help people. Hospitals are no better when they charge insurance companies what they do!
We live in a government run by idiots and the rich......
This is our Holland and it's not always roses. Yet God will somehow, someway provide a way. He always does.
~Special Momma ~
"Your son has what your daughter has." I already knew it when I first saw him and the last ultrasound I had showed most likely.
I'll tell you though, yes I knew the risk when I found out I was pregnant with him. I got that pregnancy test positive on the day that my angel baby would have been due. My 5th month of pregnancy, I had a dream about my son. I didn't know his gender yet but in the dream a voice told me, "He will prepare the way." My daughter, in my 5th month of pregnancy with her, I had a dream that a beam of light shined onto my belly and a voice said, "You are anointed."
I remember both dreams clearly. Very clearly. Little did I know what we would face....
Little did I know eight years later after I had the dream about my daughter, where we would be. Little did I know how blessed yet sometimes cursed I would feel. Blessed because I have two mostly healthy children and one angel baby. Yet cursed in a way because of the struggles...
I hear it all the time that we are blessed. Yes, I have my husband, my children, a home and transportation. Yet the reality is that I don't know what we face ahead. Just earlier today I told my husband (Not where the kids could hear me!) that I feel like what we deal with now is my atonement. He often tells me our budget can't make it. I often hear how tight things are and that now we have the house, we have to cut the budget even more. He's talked of finding a second job, one that will give him no more then 16 hours a week more. Any more then that and we lose SSI and Medicaid for my daughter and would likely lose Medicaid for my son too. The primary insurance is nowhere near enough to cover what has to be. Forget the appointments for a minute. Just the meds she has to have a month, would be easily 300. That's just for my little monkey. No telling what Mr. Froggie will be. Now add in deductibles, co-pays and all of that to doctors. In a surgery year, we would owe at least 100,000 in all medical costs that year. Not prescription costs, that's easily another 3,000. That's just accounting for my daughter. In a non surgery year, it would be about 20k for only medical. Who can come up with that??? That is with the primary insurance but without Medicaid. So we lose Medicaid, we are in deep trouble. These numbers don't account for food, gas and lodging that trips to Little Rock and Dallas require. So yeah, that's always over our heads.
You know what? This is the reality for many like us. This is our Holland. Now, you may be thinking, "Why not have fundraisers?" There are some, even locals who have for various things and raised money. We are not fortunate. In seven years, I have had four I have tried. The first I had jars out when my daughter was first diagnosed with her craniofacial. In six months of those being out, we got about 3,000. That lasted a little bit. Up till the last couple of years we were able to set some money aside. Not anymore. Not in a good while. Yet the medical journey doesn't stop. Traveling still has to be done and bills need paid. The last three fundraisers, the last one being six months ago all flopped. Didn't even raise anything in two of them, the third one got $10. That's it. Yet life goes on, right?
My daughter goes to Little Rock this week for the pain clinic. It's for her migraines. We are supposed to do that once a month, sometimes once every two months. Little Rock is 2.5 hours driving one way. Dallas is about six one way. I'm having to face the reality that I am going to have to tell the pain clinic that we either space the appointments out more or cancel entirely because we can't keep up. This has been coming down the pike for a good while now but with us in the house and more utilities with it, I don't see options. What will that mean? Increased and or more severe headaches that my daughter gets. Her headaches average about three to four a month currently, severity varies. Yet what choice is there? What will the reality be for my son as he gets older as well? I just don't know yet.... We have also faced the reality that depending on insurance issues, we may lose the team in Dallas that cares for both of my children.... Then what? Hope and pray I find a trustworthy team that can and that accepts our insurance..... Yet also risk more....
Those who don't walk a journey like this don't have to make tough choices like that.... Life in reality is full of tough choices for everyone. It's honestly full of miracles too. I wouldn't change it, mostly..... Perhaps it is though my children that others will learn love and acceptance as well. Judge by appearances and disabilities less and love for the inside more.
Despite how ugly life is sometimes, I am blessed that I have what I do. Just sometimes though, I wish we could better afford what my children and we need. Yet life is what it is. The hardest part sometimes is looking out, seeing that others get what they need, fundraise more then enough to cover medical costs but others are left with the reality of bankruptcy..... We are not to that point yet but what truly scares me, we are not far from it at all.... Medicaid gets lost and or we lose my daughter's SSI, that would be our reality. Then what??
As beautiful as riding the cliff edge can be in a journey like this of special children, knowing the fall would likely happen, is what makes a journey like this terrifying.... For some it's even not knowing if their child will survive to the next day.... For many, we also ride the fiscal cliff edge.... Knowing that because of money my children won't get all of the care they need hurts. What kind of mother does that make me??? Some of the stories I read about really makes me wonder how are some deserving of the care therefore can afford it easily yet others can't? How is it that some children out there are denied a chance at life because someone thinks they don't have much of one anyway so why bother?? Who decides that crap?! Who decides who is "worthy" of care and who isn't?
What makes some think they are God and decide who is worthy of life let alone a fair chance? When did this pathetic society get to the point that clinics and hospitals would rather decide who of their patients they can make the most money off of and forget the rest? When did we get to the point that regarding human life, no matter how poor or disabled were less valuable and worthy then turning a profit? When did we get to the point that insurance dictated everything, including who lives and who doesn't, and truly the only reason they exist is to also make profit. It has nothing to do with truly wanting to help people. Hospitals are no better when they charge insurance companies what they do!
We live in a government run by idiots and the rich......
This is our Holland and it's not always roses. Yet God will somehow, someway provide a way. He always does.
~Special Momma ~
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