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You gotta start somewhere…

I love my family.  They are my LIFE.  Over the last 10 years we have been through it…I mean, nasty, horrible, IT.  This last year has been brutal, and although we are hanging on by a thread, God is faithful.  This blog is not about telling our story, although I hope it touches someone and helps them to see that they aren’t alone.  It is about having a place that is safe to just be myself, where I can cry, laugh scream and maybe sing a little…as I learn how to breathe again.

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Wishing

Hard to believe it has been almost 6 months since my last post.  The days blend one into another and before long, time has melted away.  I wish that I could say that things are so much better; that everyone is feeling great and we are all one big happy family.  I WISH.

As most of you know, we have finally gotten a diagnosis for Adam…Gastroparesis.  The doctors at Wake who we thought would be the only people to help us have said that there is nothing to be done for him.  All these years, all this pain, all this suffering…and they simply told him to “hang in there” and they would see him in 3 months.  He is not a candidate for the three surgical procedures available to help manage the pain and nausea that is stealing his life.  We are left with only alternative treatments, which are very few, and very expensive.  IMG_5676

I have made a new GoFundMe page for Adam.  I share it everyday in the hopes that everyone on my friends list will pray, donate and share. Everyday I check that page, and see that the number is not going up.  It is hard to depend on others, but we have no choice right now.  I work hard at squelching the anger and betrayal I feel that people I have known for over 20 years type empty “I wish there was something I could do” messages, as I beg daily for shares, and donations to help my son.  Don’t they care?  If it were there child, their grandchild, their family…but it isn’t.  

I watch my friends post about graduation parties, college acceptance letters, engagements, births of children, careers, lives…I am happy for each one, thankful that you do not have to carry this blanket of sickness and disease that is stealing my babies from me.  My tears have fell without ceasing as I have looked at your pictures…this pain is so intense that it consumes me time and again.  What I would give for the mundane, the routine, the normalcy of the progression of life.

For every moment of happiness we try to be more than grateful.  Little things that other families take for granted we celebrate as if it is the most grand and wonderful thing that will every happen to us.  One of these things,  for Taylor, was prom. 212E28C7-201D-4E32-B5AC-8065B0B9898B

 Every year when the homeschool formals would come around, Taylor would either be too sick to go, or recovering from surgery.  Due to all the medical issues she faces, we are still finishing up high school, and an exception was made for her to attend, even though she exceeded the “age limit”.  Although the night did not go at all as we had planned, my beautiful daughter showed such maturity, strength and grace…for a few short moments..she was just another happy young lady.  Those moments were so very short.    But her smile that night, it made me joyful.

 Just when I think she can’t look more beautiful or make me anymore proud…she amazes me.

I wish they didn’t have to be so strong…I wish that they could be doing all the things that young adults are supposed to.   I wish God would heal them, my marriage and our family.  How many times can you cry until your eyes are swollen shut, before you are empty?     How do I get rid of the anger, the frustration and the heartbreak…the grief for lives that are so very different than the hopes our hearts held  for them???  How do I keep hope alive, when all I want to do is drive and never stop?  How many prayers must be said before He looks down and says ENOUGH…I wish I knew…I wish I had the heart to continue plastering a smile on my face and the energy to continue on.  I wish…                                                                                      

 

 

 

 

 

 

Change

I hate it…I avoid it at all costs.  Ask anyone who knows me well and they will tell you, I am a creature of habit.  I eat the same things, listen to the same music, (with a rare exception if I find something awesome)..I am a homebody..I don’t really like to go “out”, but when I do?  You guessed it..to a place I know well; Walmart, Ingles, Dollar Tree…I am so predictable it is sickening.

But sometimes, you don’t see it coming…you can’t prepare…you can’t stop it.

It slithers in and waits until you are comfortable, thinking that things were finally smoothing out.  The doctors were on the right track,  the horrible place your marriage was in had given way to a gentle love and respect relationship, there was a feeling of guarded optimism that although you didn’t have things, or money, or a nice house, you had enough.

Then, it oozes in through cracks…or busts through the door.  One is just as destructive as the other.

One morning, it is all different.  Your kids are no longer smiling, laughing, healthy, living…  he no longer craves to be with you….your health and the health of your spouse, and your marriage, are crumbling….where there was barely enough money there is NO money….suddenly you are screaming and no one can hear you.  What did I do to deserve this?  How can they be so sick with no answers? How can I make him love me again?  Then you realize…

There is nothing you can do…no amount of tears, or begging, or gut wrenching screams will stop it.

One of my favorite songs the kids were taught in Head Start talked about ” I can’t go over it, I can’t go under it, I can’t go around it, I have to go through it”.

So I am going through it…and it hurts.  Some days I just want to get in the car and drive…to another place, another life, off a cliff…depends on the day. This family is but a shell of what we once were…I am hanging on with everything I have, every breath in my body…But sometimes…

You have to let the change happen.

 

 

 

Miracles

In our day to day life we don’t think about them.  We are so busy with everything that we don’t slow down and realize; about that time we “almost” slid off the road,  when our child’s fever was so high the meds wouldn’t bring it down, when we couldn’t breathe, we hit our head, were in the wrong place at the wrong time…the list goes on and on.  How do you think you made it out of those situations?  Believe me, YOU had nothing to do with it.

For our family it has been  lots of little ones, and more big ones than I can count.  Depression keeps me from really seeing them, but that doesn’t mean they aren’t there, they didn’t happen, that more aren’t on the way.

My faith is running low; my heart is broken in so many pieces.  I climb out of the pit, only to get knocked right back into it.  It seems like the darkness is clinging to me just like my babies did when they were born, unwilling to let me go for even an second.

The only way to try to keep my head up is to really count them.

When I almost fell into the Grand Canyon as a child.

When I ran away from my mom in the parking lot of the grocery store and was almost hit by a car.

When my fever was so high when I was just a toddler that I was hallucinating and they couldn’t figure out why. (and all the fevers after this one)

When I did stupid things as a teenager and young adult that should have killed me or made me sick for life.

When Dan fell asleep at the wheel when he was driving and was awoken just seconds before running off the road, or into oncoming traffic (this happened many more times than he ever admitted to me)

When the kids were born healthy (except for a few minor things) in spite of it being a multiple birth, and the stress of toxemia.

When Adam had meningitis and we were unsure if he would live.

When Taylor rolled down the bank at Craggy Gardens and instead of hitting the concrete picnic table at the bottom, she rolled right underneath the seat, without a broken bone or concussion.

When Adam flipped over the handle bars of his bike and almost landed in the road in front of a car.

When Dan, Adam and Taylor were in a serious car accident in 2005, and they all should have been killed.

When He allowed me precious time with Trevor before he called him to Heaven.

When the tumors inside my body were benign.

When  our kids went through numerous surgeries.

When the tumors inside my daughters body were benign.

When He brought my mother through horrible medical emergencies twice, with her mind still intact.

When He healed my mother in love from cancer not once, but 3 times.

When He kept my husband and I together, even when one of us didn’t want to stay.

When He preserved my husband before, during and after major brain surgery.

And a million more…

Holding on for the ones we still need…healing, restoration, the return of joy and love in this house.  To feel good, love one another, and LIVE…

 

 

 

 

Broken

If you are looking for something to read to make you smile, laugh or feel good…this isn’t it.

I am exhausted and fed up.  Everywhere I look in my life something is broken.  My marriage?  Broken.  The health, heart, spirit and mind of my children and husband? Broken. Our finances?  Broken.  My health?  Broken.  My heart???  SHATTERED.  Am I depressed?   Discouraged?  ANGRY??  You bet I am.

It’s suffocating to be surrounded all the time with the pain and suffering of you family.   It’s like someone has a million weights tied to your arms and legs…a wet blanket over your head, has told you that you can help your family if you can get to them, and is forcing you to walk around in circles…and when you almost reach your family, they move.   I have told close friends and family that walking into my house on most days feels like I am walking into a morgue.  Harsh you say?  Try it for one day.  You will agree.

These moments are my reality.  Every. Single. Day:

The anguish of seeing my beautiful daughter taking 15 pills a day just to be able to barely function..who tells me everyday how horrible the pain is..what a burden she is….how she has ruined my life, made me miserable. Cries to me how much she wants children of her own, why won’t God heal me Mom???

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I always hug her and tell her this is my job, to take care of her and her brother, to teach them, love them….

And even if it wasn’t my job, I would do it anyway.

Because they are my very soul.

 

The agony I feel watching them struggle everyday is a pain I cannot explain.

The torture of listening to your son say that he knows that he will be homeless one day  because he can’t work to support himself,  and Mom and Dad aren’t gonna live forever.. that he hopes he dies in his sleep before that happens…dsc07526

Mom, I’m so hungry, but it will be so much worse if I eat anything…to know he can smell the food cooking and that he is starving but can’t eat anything….To look at his ever shrinking body  and know that if something isn’t done, if someone doesn’t do something, in another 6 months I could be burying my only son..

These words from my precious children echo in my mind every hour of every day, like a loudspeaker they repeat, over and over.  I am supposed to protect them, take care of them…how do I do that when doctors don’t know or care and no one will listen?  Tests after tests, doctor after doctor…PLEASE SOMEONE HELP MY BABIES!!!!

Now add in a husband who has rarely been sick a day in his life…who now has problems doing simple tasks…who is a MIRACLE after surviving brain surgery with only a mild processing delay in some areas, numbness and a weird swollen sensation in his face and tongue, which drives him crazy and makes it impossible to sleep, yet impossible to keep his right eye open during the day.   imgWho hasn’t been able to return to work yet, who is depressed (yes I said this, about my husband, online where people will read it), and withdrawn.  Who pulls away from me instead of toward me, who would rather be alone with his own thoughts than with anyone.  A marriage that was already struggling on it’s best days has now become, well, nothing….haphazard attempts at certain times to refocus on each other, draw closer, then the next day dawns with all of it’s struggles and gale force winds…and nothing again.

Then comes…a car accident.

God?  REALLY??

Rear ended and pushed into the car in front of us.  Concussions all around for Dan, Taylor and I (Adam was not with us).  The car? Damage totaling over $2000.

Then the news that the hospital failed to share with us…Dan’s bone graft has shifted…we knew something was wrong but attributed it to the concussion/cervical strain…panic sets in for both of us…what does this mean?  Another surgery?  What about the job they are holding until January 9th?  He isn’t ready to go back…what now?  A quickly scheduled appointment to see the dr after a previously scheduled MRI on December 7th…and now we wait til next week.

I am overwhelmed.  Most days it is all I can do to peel myself from the bed and force my body to move despite the pain and the depression and the heartbreak.  Will today be different?  Will the kids wake up and say they actually feel “not so bad”?  Will Dan have a day where he wants to spend time with us?  Will I be able to keep one foot in front of the other?  To keep it all together, take care of everyone, and try not to lose it, not get angry or hateful? I am failing at all of the above.

I should be praying constantly, worrying none, full of joy because “The joy of the Lord is my strength”…but I am not. I am so far from joy.   Words won’t come, my voice is silent.  It’s my responsibility to lift them up to you God, but I am paralyzed by all that is swirling around us and I am not able to do what you have called me to do….  Intercede for them… for my family, my life, my loves.

Well meaning people tell me that God breaks you before he makes you into what He wants you to be…that He won’t give you more than you can handle…He only gives his hardest battles to his toughest warriors…

God, if you are listening, please, I am begging you…ENOUGH.

I can’t handle another moment of this…torment.

 

 

 

Waiting….

I hate it.  Being forced to wait.  I am impatient.  And stubborn.  A control freak…and OCD? YEP.  That’s me.  You would think I would have some wonderful revelation about who is really in control.  I know it.  I just struggle to give over control to anyone..even God.

Last week we had an appointment for Adam at Wake Forest.  We have waited for this appointment for months.  When you have spent years trying to figure out what is wrong with not one but BOTH of your children, you do research..LOTS of it.  I came across an article about Gastroparesis and with it the name of Dr. Koch at Wake Forest.  I believe with everything in me that this is what Adam has, despite of all his normal tests.

So now, we wait again.  More testing at Wake Forest…3 more trips at least…more waiting.  Watching Adam slowly starve to death is beyond any words that I can utter.  If something isn’t done for him the reality that I could bury my only son is imminent.  He has chosen not to have another feeding tube, because in his words “it will only help me gain weight, it won’t fix anything”.

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On a good day on the Blue Ridge Parkway being silly

I want to hold him.  I want to climb into bed, snuggle up next to him and just hold my son.   He is so angry. So am I. Why is this happening?  How come other kids can have friends, a job, a girlfriend, a LIFE..and not him?  Almost a year ago he decided he didn’t believe in God anymore. ” How can HE be there and see the pain and not intervene”?  We taught them to ask and believe…pray and believe..trust…Adam feels abandoned… “God isn’t listening … He isn’t really there…or He would heal me”…

I admit it. I feel that way too…Trust is a hard thing for me…Faith?  Even harder.

Help me to not give up Lord.  Adam depends on me.  Help me to love him more, pray for him more. Help  me to be more  devoted to prayer for my son.  Let me break through the walls that I have built around my heart and model TRUST in you… FAITH in you.

Smile…

img_4385Every fall we take pictures.  Living in the mountains of North Carolina, we would be crazy not to take advantage of the beautiful quilt of vivid color as the leaves change!  This year I wasn’t sure if we would even all be here to take pictures.  When we found out Dan needed brain surgery, my already overwhelmed heart wouldn’t even let me think about doing anything as a family, til I was SURE we were all going to be here, together.  Adam mentioned something the other day about our annual Fall pictures…then Taylor began planning what she would wear..it made me smile that he remembered, and that they were willing to take the time and the energy to traipse around the woods waiting for me to get the perfect shot.  Most people take getting out of bed everyday and feeling good for granted.  Being able to just open your eyes, smile and start your day without excruciating pain and nausea is a dream for our kids right now, let alone going OUT of the house and LOOKING like they  feel good.

After a short drive on the Blue Ridge Parkway, we stopped to take some shots.  As I watched them laugh and joke, it img_4216brought me to tears.  THIS is how their life should be..smiling and happy.  I don’t know why these things are happening to our babies.  Watching them be in pain day after day with no sign of it stopping, no doctor who knows what to do, no LIFE…is more than this Momma can stand.  Lord, help me to depend on you more.  Help me to know what to do, what to say to calm their hearts.  Help me to stand strong beside them.  Help me to trust You, no matter how my mind screams at me to be angry. Help me to not give up Hope that our children will have wonderfully happy lives with jobs and families of their own…that they will be HEALTHY..that their hearts will return to YOU.img_4314