Out of the Woods

You’ve heard this phrase “we’re not out of the woods”…it can refer to a lot of different situations, but essentially, you’re not back to where you should be. You’re still in the woods, in an unknown, unfamiliar, uncomfortable, unwanted place. And you want to be out of those woods…but you’re not yet.

We are definitely still firmly in the woods. I feel like we get glimpses of the edge of the woods sometimes…but we seem to have ended up in a different part of the woods than i’m used to, so what I see on the other side of the woods isn’t really at all that comforting or familiar.

what i’m trying to say I guess is that even though Kendall is making huge miraculous praise-the-Lord improvements…the baby steps that we are making are nothing like what i’m used to from her at this stage of the game. To be fair, the game got changed big time on us with this particular illness. She was only kind of this sick one other time, and it too was a game changer. But this time, even more changes seem to be on the horizon.

More than a couple people have already spoken with me about needing to move Kendall to the first floor of our house. She is struggling to sit up supported for more than five minutes right now, and while I know she will begin making her usual big strides in therapy…her endurance will take a while to come back online. So even IF we hit the goal of being able to walk 50 feet with a walker before discharge to home….that will hardly get her in the front door from the driveway. Kendall has a wheelchair at home that is far too small for her now, but the insurance hoops for a new one seemed too huge last year when it was due. Maybe if my full time job was just managing Kendall’s care, I could have gotten it done. But I didn’t, and now i’m kicking myself.

She will, at the very least for a few weeks, need to relocate to my front room. Carpet will need to be ripped up to make way for laminate flooring as a lot of body fluids and meds and IV fluids + carpets = a recipe for a hot mess. we may need to add a wheelchair ramp to the front of the house for her access, even if it is only with a walker for a while. I’m going to be bringing home a very different baby girl than the one I went in to the hospital with. And i’m ok with that – because at least I am bringing her home.

But all of this… ALL OF THIS….the emotions of what I watched her go through, so near to that brink of death it was nearly palpable in the room, the scariness of knowing that every med, every minute, every move was the hinge between surviving and losing, fighting down the bile that rose in my throat every time something wasn’t working those first few days after the bad crash…..and the continual unending advocating to keep her moving forward, to plan for the after, the homecoming, the changes….all of this is threatening to overwhelm me in a way I have not been overwhelmed before.

I have survived the ending of my marriage, the implosion of my family and my hopes and my dreams, the rebuilding of a new life on my own, me and my babies, the pressure of being a sole homeowner and sole parent and sole provider….and I know I will survive this new phase of being the caretaker/nurse/doctor for a very very sick little girl. But man I’m tired. I’m stressed. I don’t know how it will all get done. It will get done because I will pull up my big girl panties and figure it out somehow….but right now, i’m wanting to curl up in the corner and just cry.

but this much I know….

That night that Kendall was slowly leaving us, as I drove north to come be here, knowing it was far worse than anything I was being told, I begged God to not take her. Not yet. I know He has a bigger story for her than anything I can imagine and I know her story isn’t done yet. She is here for a reason and a purpose beyond just me failing. I know God will not let me fail in this, just as He has never failed me before. I had  on my “Jesus music” playlist. Hymns, some praise songs that aren’t super smarmy, instrumental music to soothe my soul. And I played that playlist and I tried to sing the words along with Mercy Me’s “even if” – I know the sorrow and I know the hurt, would all go away if you just say the word but even if you don’t, my hope is You alone….it is well with my soul.” And I COULD NOT get those last few words out. it was NOT well with my soul….I needed my baby and I needed her to LIVE. And she did. And she IS living.

so I’m focusing on that. I am stressed about money – I think I have bills due this week and most of them are on autopay but I don’t think I’ve even opened all the mail piling up on my counter and it feels like forever ago since I’ve been home, really living my life. When I am here, I am not able to work. Not being able to work means no income coming in. While child support is helpful in keeping the house going, I am burning through what little savings I had been trying to build for our summer vacation. My other babies still need food in the house, activities to do while I’m not there, gas money for getting to those activities….and I give them everything I have. But then what? I know God will not let us fail, but it is hard to not be afraid of these questions. How will I do this? I don’t have answers…but I am doing my best to let my faith be bigger than my fear. The words that rang through my head as I pleaded with God to spare Kendall were from the story in the gospel of Mark where the little girls dad had been running to Jesus to get him to come heal his sick daughter. Jesus simply told him – don’t be afraid, just believe. I have echoed those words over and over and over again to myself so many times over the past weeks. Don’t be afraid, just believe. 

Except it’s all really really really scary. Some of the scariest moments I have ever had to endure. And they keep coming. I don’t know how this will all work out or end up…but I know I have to believe it will. I have to believe that Kendall will get stronger soon. I have to believe that we will survive. I have to believe that if I need to make my front room a hospital bedroom that I will be able to do that. I have to believe that the story of the miracle that is Kendall will touch someone’s life, inspire them somehow, and go so far beyond my own pain, her pain, my family’s pain….

Just believe.

It seems so simple.

Maybe it IS so simple.

But oh how hard.

~~~~~~~~~

Kendall will be moving out of the ICU at some point today/tonight/tomorrow morning. She requires an intense amount of coordination still and there isn’t really a good place to send her too – just that they know she doesn’t need ICU interventions anymore. (I beg to differ but what do I know? I’m just the mom. I’m voiceless in these discussions.) So we will pack up her cards and her balloons and the posters from her sisters and we will move somewhere else, with nurses who don’t know us, and doctors who want to treat my kid by some textbook that she never read, and in general….not be HERE in her home unit, where she belongs.
dont’ get me wrong – she is definitely improving. she has been “good”, stable, for about 24 hours. This is awesome. Do I think that 24 hours of stable in the face of 3 weeks of death defying odds is enough to move her? Absolutely not.

But I know my baby will rise to the challenge. She will be worn out and in more pain and in worse shape than she needs to be…but she will survive it somehow. And I will have to push for discharge far sooner than she is ready for, because that will be the only option I have to properly care for her. She still has so far to go….and this feels like we got dropped off out of the comfort of the car to walk the next 20 miles in the freezing rain by ourselves. But I guess we are kinda used to that, me and my baby girls. We have come together and done things by ourselves that I never thought we would have to – and we have thrived in spite of, or maybe because of, all of them.

I miss my other babies. I miss my own bed and my own shower. I miss my real life. I miss being able to wake up and live my life, not getting woken up by a loud resident examining my baby and making her hurt by pressing on her belly too hard and then having to coherently participate in rounds as we discuss what medical plans are on board for the day. I know we will be home soon…but it will all be so very different. I don’t even know anymore… I just want all of this to be better.

I realize that this is one long whiney ranty post. But I needed to get it out. Please don’t judge where i’m at, even though inevitably some will. And that’s ok too I guess. we all just feel what we feel and live how we live. And this is how i’m feeling and living right now. But I know that the sun’ll come out tomorrow…and maybe Daddy Warbucks will adopt me and take me in an autocopter somewhere too.

I don’t know, guys. I try really really really hard to not let the negative outweigh the positive but right now it all just feels really heavy so I don’t know how to end this positively. Except to say that I am So grateful and thankful to have my baby here still with me. I am glad we are able to even make plans to come home. And so i’m going to hold on to that.

Peace out party people. See you on the flip side. where hopefully I found a better attitude.

<3

T.