Hard words

There's no easy way to start this blog post. I've got some hard words to write, but I have hopeful words as well, so I'm just going to jump right in with this plea - don't react to the hard words until you've read it all.

Yesterday afternoon Noah was admitted to a hospice care program. He wasn't admitted to a place (like a hospice house) - he was admitted to a program of in-home care.

Noah is not actively dying by ANY means. In fact, at this moment he's dressed up like a fireman and he's very, very busy living.

We intend to keep him busy living until he's ready to stop the fight, and this hospice program will allow us to to so.

South Carolina is a "continuum of care" state, which means that pediatric hospice patients can receive as much life-extending care as they would if they were not hospice patients. Nothing about Noah's care will be diminished. If he needs surgery, he'll get it. If he needs antibiotics, he'll get them. If he needs to be hospitalized, he will be. Absolutely nothing is being taken away. I cannot over-emphasize this enough - this bears very, very little resemblance to adult hospice.

Nothing is being taken away, but much is being added. Hospice care will:

- - give Noah better, faster, more informed access to pain control (improvements in his pain plan have already been implemented!)

-- give us 24/7 access to on-call pediatric hospice nurses who will come to our home at ANY time that help is needed. Some of you saw on FB this week that Noah's g-tube was pulled out Monday night and I was unable to reinsert it due to swelling/pain/non-stretchy new scar tissue. Under hospice, a nurse could have come and helped with additional pain coverage and possibly managed to get the tube in (or at least shortened our ordeal).

-- provide in-home child life services and other services for Noah.

-- help fast-track (and I mean REALLY fast) any additional equipment that Noah needs.

-- provide in-home nursing visits several times a week to keep very, very close tabs on Noah's pain and other health issues. Everything should happen faster than it has in the past.

-- make us eligible for additional services such as private-duty nursing. We are choosing not to accept private duty nursing at this point - while Noah's care takes a great deal of time, we ARE managing to do it ourselves and prefer to do so as long as we are able.

-- help us make informed and appropriate end of life decisions that honor and respect Noah.

Of course, there's a catch. I mentioned a while ago that we had met with this hospice care team in the hopes of having Noah enrolled in a palliative care program. After everyone involved (their team, our doctor, and our nurse) stepped back and looked at everything, it was determined that a hospice admission was more appropriate.

It's getting hard to type this.

For Noah to qualify for hospice, he has to meet a specific requirement . . . that IF his disease continues to progress at this rate, he would be expected to live 6 months or less.

NO ONE has a crystal ball. NO ONE knows how long Noah has - hours, years, or something in between. This isn't like other diseases where there is a body of evidence saying what to expect. There is no real reason to think that he does in fact have 6 months or less to live. After all, he could get more stable - he's done it before.

So here I sit, writing through tears, caught in the battle between mind, emotions, and will.

My mind understands the truth.

The truth is that hospice is only a word. It doesn't make him any sicker or any closer to leaving us.

The truth is that God is still on the throne. His plans for Noah (and all of us) are for good. He loves Noah more than we do. His ways are higher than our ways, and we can't (and don't) expect to understand what is happening - we only seek to understand Him.

The truth is that nothing is being taken from Noah, but much is being given. Noah will benefit in so many ways from this.

My heart is breaking.

I didn't blog about this all week because I couldn't. Until we got the call from Dr. B last night saying that the last of the paperwork was signed, a tiny part of me was hoping for a different phone call. Part of me was hoping that someone would call and tell me that it was all a mistake, that they had gotten something terribly wrong, and that Noah couldn't possibly qualify for hospice. I know that's silly, but it is the truth.

This pain defies all logic and sense. My heart screams that this can not possibly be right. He is too little. He is too vibrant and alive. He is doing too well.

He is too precious to me.

My will has to choose.

Every minute, with every heartbeat, my will has to choose.

Do I walk in the truth that I know, or the agony that I feel?

So far, most of the time, truth is winning. It isn't easy right now. I'm choosing to walk, to act, to live in the knowledge of what is true, but the right now the grief beast has its teeth sunk in very firmly and I'm having to drag it along with every step. I know that I will kick it back to the corner again in time, but that time is not today.

I might be walking with a limp, but I'm walking. The One who is leading me is far stronger than the hurt that would hold me back, so I'm choosing to once more fight my way back from the pain that could consume me. In choosing truth, I'm choosing to live life even when part of me wants to go to sleep for the next 20 years. I am organizing school supplies, playing games with my children, sneaking away for coffee and a doughnut with my husband, cooking, reading, snuggling wee ones, and even managing to smile sometimes.

I'm choosing to tell myself the truth over and over and over and over because I know that if I do, eventually it will take hold and I won't have to fight so hard to believe it.

Right feelings follow right actions. Sunshine and roses don't necessarily follow right actions, but something amazing happens when I choose to walk in the truth even when I don't want to do so. Eventually, sooner or later, I find myself blinking in surprise at more joy and less pain. More hope and less despair. More laughter and less tears.

I know this will happen again as it's happened so many times before, so today I will walk and I will wait, thankful that I don't walk alone.

Blessings,
Kate