Reflections

Its been 9 days since Jacob and his unicorn were last discharged from the hospital. This is the longest “break” we have had since chemo began.  I say “break” because it never leaves. There really is no break from cancer. From the side effects of the treatment. Medicine that leaves Jacob unable to stand, unable to eat or keep the other medication to counter the after affects of chemo down.  The first evening back home Jacob fainted. From then he was throwing up anything he took in and his mouth and throat become almost completely covered in sores, called mucositis.  Ringing in his ears has started, which we were warned about, but you hope so much that the side effects won’t affect him.  But they keep coming. Thursday Jacob was admitted back in hospital just for the day for hydration and IV medication.  He perked up enough for us to watch a 2 hour private pre-airshow and we went back Friday night again as well.  It feels so good to be able to do a few normal things yet as summer is quickly fading away. 

A few reflections on the last couple of months.

•  Our family and friends are incredible.  The love I have for them is so deep. Though my brain is often too full to say it or I’m too consumed and busy to take the time to express the gratitude I have for the love and care shown to us, this is something that has helped carry us through, and this road would be unimaginable without them.  This goes as well for the church community.  For anyone reading this who has helped in any way, thank you.  We need you, and will continue to need you.  They say when a child gets cancer, the whole family and the whole community gets cancer. It impacts so many people.

• Jacob continues to amaze me with his positive attitude and maturity and faith.  He still had not complained once. He still accepts what is on his path. He shows wisdom and foresight in his thinking and we really could not be more proud of this kiddo of ours.

• My world has shrunk and grown, all at once.  When you hear the words “ your child has cancer” the world seems to shrink.  Nothing else matters. It’s all consuming and encompasses everything you do, everything you say, everything you listen to, everywhere you go, every encounter you have with someone. I have only been to church twice in the last 2 months, so I feel more distant from the church family and functions.  Yet I’ve met many new people at the hosptial, new friends and people that I love dearly already, who have become my tangible support system while staying at the hosptial.  They get it. They know exactly. And in some ways, it’s comforting knowing someone else truly understands what your brain is going through. On the evening of Jacob’s first hospital stay, I tried to convince myself and others near me that I was going to keep to myself, to hang my head low in the hallways, to not engage too much with the other parents and children there. I was afraid initially to hear more sad stories, to meet people who may have endings to their journey that I don’t want to know about.  If you know me well, you would laugh at my stating that I was going to keep to myself. This goes against my character completely and by day 2, that statement went out the window and I was already starting to love the families there.  Now, when I go to get some water and I don’t return for an hour because I’m caught up talking to other parents, Jacob loves to remind me of my ridiculous claim I made that first day.

• The mind and brain are so powerful.  My brain has shown me incredible coping skills that I did not know I was capable of. The mode I’m in at the hospital is completely different than when I am at home. It’s actually easier for me emotionally when I’m at the hospital with Jacob. Partly because I feel “safe” there, and partly because my mind shifts into a different gear and I’m able to block what I need to at the time to get through.  When I go home is when things get harder for me and I allow myself to process. A hard part for me in this “coping” phase is that it’s hard for me to find room for other things going on. A woman in our church passed away recently – someone who I got along with very well, someone I went to each Sunday for a hug and a laugh.  I wasn’t able to process her death – there just wasn’t room in my brain for it. Another dear friends daughter is very sick, and I cannot be there for them as much as I want to right now. We both acknowledged to each other that the desire to be there for each other is there so deeply, but we both understand that most of the time 100% of our energy is directed to our situations with our own sick child- but it still hurts so badly.

Tomorrow afternoon Ray, Jacob and myself will meet again with the surgeon to discuss our options further.  Jacob received results of his bloodwork from yesterday and he has no white blood cells in his body at all.  He is extremely fragile right now and so vulnerable to infection. Your continued prayers are appreciated and needed.

Walking on Water – NeedToBreathe

The wind is strong, the water is deep
My heart is heavy and my mind won’t sleep
Oh can you heal, my fear it breathes
I need to know if You’re the shadow I can see

I wanna run to You when the waves break through
I wanna run to You and not turn back

There’s no turning back
Nothing in the past
My eyes on You again
Can’t see nothing at all
But Your outstretched arms
Help me believe it
Though I falter
You got me walking on water

The ocean’s singing, the song of grace
But if I’m honest with myself, I am still afraid

I wanna run to You when the waves break through
I’m gonna run to You and not turn back

There’s no turning back
Nothing in the past
My eyes on You again
Can’t see nothing at all
But Your outstretched arms
Help me believe it
Though I falter
You got me walking on water