His Hands Are Holding Me

Warning graphic pictures will follow. *update June 4, 2015...Original graphic pictures are no longer with this post. Not sure what happened to them. Hmmmmm....

"Mommy, you're hurting me."

"Please don't. I hurt."

"NNNNNNNOOOOOOOOOO!"

Screaming, crying, kicking, yelling....these are our nights, our mornings, our life.

I will never be able to really describe with words the sounds that come from Bradley's mouth. Night...specifically bathtime....is the worst. The next would have to be the 2:00 a.m. screams that could bring the dead out of a deep sleep.

I won't lie, it is tough, painful, frustrating, painful, tiring, and did I mention painful to have to put Bradley through this pain or to watch him and try valiantly to bring some sense of relief to the pain, but knowing I can't.

I could get angry. I could yell, kick, scream, rant and rave myself, but that won't do any good and it will only cause Bradley more stress if he hears it which will in turn stress him which will in turn cause him to scratch and make his wounds worse.

How can I not do those things? Where does the patience to work through the screaming, kicking, wiggling, etc. come from?

God. He has to be holding me. Not just carrying me, but holding me as a mother holds her baby who is in pain. Who is crying. Who just doesn't understand and wants it to all go away.

Have I wondered what I've done for Bradley to be in so much pain? Yes, but I received the peace I needed one night while reading the Bible. December 18, 2007 God revealed to me the answer to my prayers and I trust him. He led me to John 9:1-3 (1) As he went along he saw a man blind from birth. (2) His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" (3) "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."

My reflections from that day: How often do we question God about the "shortcomings" or "problems" we have? How often do we blame Him or set blame on ourselves? When truly it could be that we are the way we are so the work of God can be displayed.

Bradley was almost 2 when I wrote that and I was pregnant with Tori Brooke. We had already been battling Bradley's eczema, asthma, and allergies for about 1 1/2 years. That winter things were looking up with the eczema, Bradley was not hospitalized with his asthma that winter (of course we were doing breathing treatments twice a day to prevent it), and we had his allergies....for the most part...under control.

March/April of 2008, just a few months after my revelation, the eczema reared its ugly head. We tried to go back on the same meds that had worked the previous year, but insurance refused to cover the med (Protopic) which out of pocket was about a $400 drug. Needless to say...not in our ability to pay for. The insurance had sent a lovely letter telling us all we really needed to do was make sure to have a humidifier and use lotions, lotions, and maybe some hydrocortizone. Isn't it nice to know our insurance providers now know us as patients and are medically licensed to make such decision?

The dermatologist fought it and insurance finally approved the med. for a total of 1 year. Unfortunately, the med did not work this time. Summer was awful, Bradley's legs and feet stayed torn up with sores.

In August we saw an allergist and it was confirmed that Bradley definitely had an allergy to milk, but also to egg (will probably never get to have anything with egg), citric acid, and slight indications for peanuts. Clearing out our pantry, fridge, and freezer, and then shopping that weekend, we realized there was no way we could work through this if we focused on what he couldn't have so we decided to focus on what he could have.

Unfortunately elliminating all these foods from Bradley's diet did nothing to help his eczema. Well, maybe a slight improvement, but not enough. Since August Bradley has been on antibiotics about 8 times and of those 8 at least 6 or 7 were because of staph infection.

The most painful part was knowing just how painful my own eczema is and knowing that my baby has it so much worse.

We finally switched dermatologists because the one we had been seeing since June 2007 rarely wanted to see Bradley, never spent more than 2 minutes with him, and was insistant on using meds. that were obviously not working. It was all about us...we needed to make sure he didn't get hot. Now, I don't know about you, but have you ever tried to stay cool in South Carolina from the months of March to November?

In December Bradley's allergist finally prescribed a medication that cleared his hands up in a heart beat. When Bradley returned for a follow up with his dermatologist, she immediately got frustrated, said not to use that med and prescribed 2 more meds that were stronger. Now correct me if I'm wrong, but if the weaker medicine is working, wouldn't you continue using it until you needed to move to something stronger? That was it...we were going to find a new dermatologist.

In January we started seeing Dr. WELCH(dermatologist). She has been wonderful. She and her staff spend a lot of time with Bradley, she swabbed all areas of his skin that had rashes or sores, and took him off the 6 other meds he was on...replaced with only 2!!!

These new meds were working for a time. Fortunately Dr. WELCH was seeing Bradley every other week to get his eczema under control. Around 2 weeks ago, things took a turn for the worse....again.

Bradley woke on a Saturday morning (or was it Friday) he was drenched in blood, his covers were soaked....he had not only scratched open sores, but created new ones (graphic pictures below...view if you wish). This time the wounds were deep. We were able to keep things somewhat under control for a few days by bandaging (wrapping so B. looked like a mummy). Then on Tuesday the 17 I got a call from school. Bradley had managed to tear open his thumbs...and they were deep. The derma. saw him that day, we started wet wrap therapy, no steroids...only topical antibiotics and vaseline to keep moist. Returned 3 days later...things looking up.

Now we are seeing dermatologist weekly. We've been doing complete wet wrap therapy...meaning B. is in wet PJs all night with a dry fleeced footed PJs over top. This has been working, but now Bradley is starting to scratch again.

This Wednesday we are going to push for MUSC...this was suggested to us 2 weeks ago.

Now that you know what's been going on, let me get back to the picture I was painting in the opening of this post.


Bath time is always a problem. Water is painful....and I believe it because I think it is painful. With wet wrap therapy B. has to soak in tub to soften up skin to be more receptive to soak in moisture from vaseline. First night was okay....we went swimming in tub. Next night so-so and by night 3 I had to hold my baby in the tub. If you've ever tried to hold a determined 3 year old down, you would know how difficult this can be just physically.

Now imagine having to do it while your child is screaming as if he is being scalded in boiling water while someone else peels his skin off with a potato peeler and multiply that by at least 100. Not an easy task...physically, mentally, or emotionally. And that is our nightly ritual.

A couple nights ago we finally got Bradley to bathe without one of us swimming...we bought those crayons you use to draw on tub walls. This worked for 1 1/2 nights. We are once again back to holding him down in the tub.

How can I do this night after night?

There is only one answer.... His hands are holding me...as I mentioned above.

I emailed my mom last week, but feel I must share my story here as well. I really feel a presence around me right now. There are certain areas around my shoulders and down my back that just feel as if someone is there, supporting me, holding me up...it can only be Him....

I pray that He continues to hold me safe in His arms. I wish I had words to really describe what it feels like to be held but I don't. And to think...if I feel this speechless about what it feels like to be held by Our Savior in this earthly body...imagine what it will feel like when we go home to Him.

I know I've carried on, but I feel my story needs to be shared. I am tired, weak, weary, worn, hurting, frustrated, impatient, and sometimes feel as if I can't go on one more day like this, but His presence surrounds me telling me I can. That He is here and this too shall pass.

We really appreciate all your prayers during this time.

Lord, I pray that you continue to hold me, carry me, and keep whispering those words of encouragement in my ear. I need you and cannot do this without you. I trust in you that our pain and suffering right now will be to glorify you in the end. It is in Christ's name I pray...Amen.

By Your Side by Tenth Avenue North

Why are you striving these days
Why are you trying to earn grace
Why are you crying
Let me lift up your face
Just don't turn away

Why are you looking for love
Why are you still searching as if I'm not enough
To where will you go child
Tell me where will you run
To where will you run

And I'll be by your side
Wherever you fall
In the dead of night
Whenever you call
And please don't fight
These hands that are holding you
My hands are holding you

Look at these hands and my side
They swallowed the grave on that night
When I drank the world's sin
So I could carry you in
And give you life
I want to give you life

(Chorus 2x)

Cause I, I love you
I want you to know
That I, I love you
I'll never let you go

(Chorus 2x)