I got the call today around 2pm. I was in the middle of a Urology appointment with Keyan. We had just finished her ultrasound and were waiting for the doctor to come in when I had a chance to listen to the voicemail. It was our nursing agency. My heart skipped a beat when the nurse said we would need to start the 8 hours of nursing per night March 1st. The state is in the middle of our review and they have 15 business days to make a decision. The state says they are on day 9. Because we do not have a resolution, our hours revert back to the original plan which is 8 hours in March. I thought I was gong to vomit as the Urologist walked in and casually asked how everything was going. I swallowed the stomach acid and replied with a weak voice, "Its going alright." What else was there to say?
And so it begins....We are still holding on to the hope that the state will reinstate hours at the end of the review period but the reality is that we know that hope is very thin. For now, we cannot hold on to that. We need to cope with what is in front of us. Paul and I have spent a lot of hours over the last month trying to figure out the best use of those hours. We have calculated, pondered, and hashed over the ins and outs of taking over 4 hours of her intensive care. Nothing is simple with Keyan. Wether it is a bath, helping in the bathroom, meds, TPN, other IVs, nebulizers, or whatever else she needs, it takes an entire person plus some most of the time.
My main concern has been coming up with a solution that causes the least amount of damage. We can not escape this without damage being done. Will it be damage to Keyan and her health? Will it be damage to our other kids because we are unavailable to them or just constantly at the end of our rope? Will it be damage to ourselves? Or will it be damage to our marriage. We will do our absolute best to minimize the damage but there is no way to avoid the damage altogether. That is the terrifying truth of this situation.
Please hear me when I say, I know there are people out there that are dealing with much worse. I have friends with special needs kids who get no help, or very minimal. I have friends whose kids have earned their angel wings and are soaring around in heaven....I am sure they would trade places with me in a heartbeat for more time caring for their children. I have only survived the last three months by counting my blessings and trying to stay focused on the positive. But that is not what this post is about. It is about my truth....my heart, my fear, right now. It is about the fact that Keyan's disease it progressing. She is becoming immeasurably more complex and will only continue to do so. It is heart wrenching to live out.
It isn't about sympathy either. It is about making you aware. It is about asking you to take just a fraction of a minute and consider what people around you may be going through. It is to help those of you who see us day to day or talk to us on a regular basis to understand that we are living a nightmare. It is to explain why we seem despondent or out of touch. The fear of making a mistake in Keyan's care, hurting our other kids, our marriage crumbling, or literally loosing our sanity changes us at our core. It changes us to the point that we feel hollow...if we seem that way, just don't take it personally...please have patience with us and know that we are simply in survival mode.
I want you to hear that care giver fatigue is a very real thing. It makes me think things that I can't ever speak aloud. It weighs me down with guilt every turn I make. It buries me in grief beyond that which I can fight off. It takes the spark out of my eyes and as I look into Paul's eyes, I see that spark fading too. Look out for people in your life that may be experiencing this. Smile at them, give of your time, your talents, your energies. Reach out to them and let them know that they matter. That you see them. We often feel invisible. Please don't lecture, or pretend to know what they are living though....think of how the world would change if we really tried to put ourselves in others shoes. I'll say it again....everyone has their own crap....please be mindful of what people in your life may be suffering though.
