Getting Comfortable

I cry less, worry less and stress less. I am getting comfortable, again.  The problem with this is that we are not yet at a diagnosis.  We’ve tossed around when enough is enough and when we should just say “no more” to the testing.  The waiting and uncertainty are agonizing. How important is a diagnosis for a disease that has no treatment and no cure? We are doing therapy and she is moving forward in her development.  Can’t we just keep doing what were doing and let it be? The more I think about it the more I realize that it is extremely important.  Having the confirmation of yes, a mitochondrial disease or yes, cerebral palsy is the first step on moving on mentally and emotionally.  Moving forward without looking back and asking ourselves “does she really? “what if?” “are they sure?”. Being able to switch “suspected” to “has” will calm the part of our mind that keeps us up and searching google for hours and hours. That is the selfish part of the reason to keep up the search.  The other part that I believe is beneficial to Cara, is getting an idea of what we can expect.  Is she more likely to develop problems with her breathing, her heart, her kidneys, more neurological issues? We can get the right doctors on board and be aware and ready before any potential problems arise.

I had a dream two nights ago that keeps playing over and over in my mind.  There is a small room in a giant warehouse type building.  This small room is wall to wall on fire.  In the middle of the room is a big pile of wood also in flames.  I am standing at the door to this room facing outward.  Behind me is the fire and in front of me is many people whose faces I can’t make out and in the front and center is Dan holding Cara.  They are just looking at me. I stare at Cara for a long time then close my eyes and jump backward onto the pile of wood in flames and burn to death.  It actually hurt and I died in my dream. I cannot figure out why I had that dream and why it keeps haunting me.  It is not the thought that I would die for Cara.  Like any mother, I would not think twice about giving my life for either one of my daughters. There is not even a choice. It’s a fact. I am starting to think it has more to do with this struggle of finally getting to a diagnosis.  I am not sure what the link is though.  Perhaps it is just a dream that wont go away.

Cara has another MRI in a few weeks.  I am extremely nervous to hear the results.  When I think about it I get cold and my palms sweat. What does it mean if there is a change or more damage? Is a change always negative? If there is more damage what does that mean for Cara’s future? Part of this fear is because of the discovery of new abnormal activity on the right side of her brain.  The fact that her neurologist wants another MRI because of this new activity means that she is suspecting a change. Not a good change. The rest of the fear is that if there is more damage then it means this is not a static injury and there is probably nothing we can do to prevent further deterioration. She is only 1 years-old and her brain is already damaged enough that she can’t talk, can’t walk, struggles with hand-eye coordination, can’t steady her head, can’t sit-up on her own, eats through a tube… What will she be like in another year? What will another year of deterioration mean? All questions that are probably not healthy to think about because no one knows. We don’t even know yet if there is a change at all and hopefully I wont even need to ask the questions. As hard as it is, I still need to think about the possible answers.

Something that I have discovered about myself is that I have to feel prepared.  I always have to feel prepared for everything and especially for getting bad news.  I need to sit in the worst case scenarios and accept the negativity before I can think positive.  I have to go into the fight ready to be hit square in the face and have a recovery plan before I can consider winning.  I have to go into a doctor’s office ready to hear heart wrenching news and be able to walk myself out and drive home before I can play with the thoughts of joyful news. I am not a negative person.  I am a person that is scared of being blind-sided. Scared that if I am not prepared for the hit to the face then I will never be able to recover from the knock out. I have two little girls and a husband relying on me to continue being a mother and wife.  I can’t risk not getting back up.

I find myself feeling more comfortable and getting use to not knowing and it scares me.  We’ve been through this before.  We were comfortable and recovering from Cara having a brain injury and being “special needs” and bam! we were hit in the face with a suspected disease that can likely take her life. I can’t get comfortable because I don’t think I can take another hit. I can’t afford to not keep going, I can’t even afford to fall down. I can’t afford to be comfortable until we know.  We know, then we can all move forward.

 

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5 thoughts on “Getting Comfortable

  1. I like that you found you need to be prepared. I think it is the competitive nature in you. I think you are sizing up your competition, i.e. “the disease” and want to make sure your weapons “doctors, treatment, etc.” are in place so that when (it will come) you hear the diagnosis, you will be ready. I think that is completely natural and quite smart.

    I know the “bad news” reality is still looming out there and I wish I could insure that it will not come. Believe me, I pray for it not to come ever, every day. But I know its out there, coming or not… but out there. I can not imagine your reality but I do think you are much stronger than you feel. I know that if you fall, there are many who are there to fall on, and will be there to lift you up including little Nat-Attack who is more than a blessing in many ways.

    You are one of the strongest women I know, you will not fall, there may be a stumble, a slip, or even a brief pause in step but to stop, I don’t think your spirit will allow it.

    The one thing I pray for myself that I want to now include you on, is that despite the crap that happens in this world, like death, disease, disappointment, hurt, pain, war in work, family, life, try to find and hold on to the daily joys. Whatever that may be, a joke, a sunset, a friend, a smile, whatever… Keep a hold on those joys as you move forward.

    Thanks for the thoughtful post. All my love, strength and prayers are being sent your way!

  2. As a teacher of special needs children, I always encouraged my parents to dig for a prognosis. Then we could talk about ‘the plan’. How we would plan to educate, how we would plan therapies, how they would plan their families life around this prognosis. I was told many times it helped to know what the root of the concern was so plans could then be made to make it better. Parents who didn’t have this always seemed to struggle a little more. When they didn’t know the reason, their plan could never be solidified so their life plan always seemed to be in turmoil. Even though it’s hard to anticipate the findings, in the long run, it’s
    better to know.

    You have been so strong for your child, her sister and your husband. You will continue to be because you are a good person who puts your family first. It’s not an easy road but look to the sidelines for the friends who are cheering you on. They will always encourage you to finish the race no matter which course you take. Sometimes you’ll run, sometimes walk, and sometimes just need to stop on the side to rest. Do what’s best for you first so you can do what’s best for Cara and your family next. Take care. I’ll continue to pray for your peace.

  3. I think one of the scariest and most heart wrenching things is to fall in love with someone that you could loose forever. A mother’s love runs so deep for her baby before she even holds her baby for the 1st time, How do you protect yourself emotionally for something like this? You and Dan are amazing and both my Dan and I have a tremendous amount of respect for you both!

  4. I went through all your posts. Most of what you pen down here were what I had gone through one year plus ago when my 2nd child was borned. Thought that we finally had a perfert family with a son and a daughter. She is such a perfect angel but diagnosed at birth with mito. Her skin biopsy futher confirms that. Her brain and liver was badly affected. She was smallish and floopy. You can’t get a smile from her except for cries of discomfort. She has a beautiful pair of eyes that look around but could not give her the vision. We dare not think of the future but can only pray for miracle. But God love her more than we do. Our little angel gone to heaven a year ago. Guilt…still in me till today. We failed to provide the best for her. Can’t stop asking God for forgiveness.

    Cara is beautiful.

    • Julie- I am so sorry for your loss. This is such a terrible disease. I hope you and your family will find peace. You were so lucky to have your daughter in your life and she was so lucky to have you as a mother. Just from the little that I read here I can see that you were the perfect mother for her and gave all of yourself to love her and do what you could for her. She couldn’t have asked for more. Thank you for sharing your story with me and I hope we can stay in contact.

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