We don't always realize just what value we have in the things that belong to us. I have learned with each increase in my lifestyle comes higher standards to keep myself happy and content. I proved this to myself with a hand full of past incidents and am well aware this is fact. Having spent so much of my time this past month without my wife and Cully here in our home led me to be more self sufficient and accountable for what I had on hand. My reduced time working led to a significant drop in my income and set me back well over a year as well.
So why do I bring this up?
Well my wife and son are home again. And just the one minute I had when Cully came to sit on my lap tonight and lean in to me made me think how many snuggles I failed to notice before. Jewels came down the stairs this evening with two cups of coffee and we sat next to each other for 45 minutes. Nothing more that the two of us. At one point she reached over and put her hand on my arm and I melted. I forgot how precious a simple human touch is.
I realize all I have now. I also realize all the demands I have and the weight on my shoulders to live the way we do. If I can pull it off I will take us back to a small ranch with a small mortgage and two paid for inexpensive cars complete with dents and bad tires. My time with my family is being wasted on working to pay the bills and less devoted to the small things like a drive to no-where with a picnic basket or a freezing cold trip to the UP out of season for no reason other than to goof around with the family.
Cully is home and on a roll. His state of mind is unbelievable. On our drive home from the hospital I listened to Cully sing out with a strong clear adult voice to one song after another. ABC songs, Nursery rhymes, answering questions with word structure. He was alive, awake, developed. He was gifted. All this had been locked away behind his seizures and we did not even know it.. Cully is one month seizure free now....
Cully's physical appearance would make you gasp. He is bloated still, face swollen and belly extended. He walks stiff like a zombi and he is unable to get into a seat on his own. Yet he is far better than a week ago. The drug that saved his life has turned against him in so many ways but it is all about to end. He is on a unheard of reduction in this drug and will be done this Sunday. He is going through withdrawals from the drug that are rather severe but temporary. He is saved.
Last week I accepted, to myself anyhow that I did not think Cully was going to make it through this. I figured we gave our best but he was not going to return home to us. I was considering all the choices we had made for him and wondered if I had done this to him. Should I have done this or that ? He was not doing well and I did not have any way to express how bad he was to others. But he did return home today. And he smiles, goofs around and at times has a rough time of it. But............
Sure am glad to have Cully in my life..... Seems he is rather lucky to have this family too......
When you watch a love story movie on TV and the shot shows the woman jump into the mans arms and they hug as the camera spins around focusing on their arms wrapped tight as they hold each other...... Well that is exactly what we saw today when Douglas walked into the house and saw Cully in his sisters arms. Cully flailed his arms out and his smile widened as Doug reached out and lifted that huge boy out of Elora's arms. Cully wrapped his arms around Doug and squeezed him until Cully was shaking and he pushed his face into Doug until the pressure turned his cheeks white.
This is the family we built.
I am SO glad you shared these very intimate thoughts with the rest of us. I'm all sappy headed now. I was SO worried for you all. Sweet Cully...and Julie...and all of you. I HATED how hard your ACTH journey was...and scary. And I am SO with you about the living simply so you can be TOGETHER! We want that too!
ReplyDeletexo to all of you...
...danielle
That is so sweet! I wish I could have seen Cully and Doug's reunion! The power of brotherly and sisterly (As well as mommy and daddy love) love can work miracles. I have a feeling being back home with everyone who loves him will speed up Cully's recovery!!! Times like these remind us of just how fragile and precious life is!!
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