Without a Crystal Ball

Our Journey through Chronic Illness

When you have a child that is Medically Fragile, it is easy for friends and family to draw comparisons between our lives. I get that what we face is different in many ways. When Von is sick, things are a bit more high stakes for us and we may need to go to the hospital. We have a lot more doctors than the average family, and we spend a lot of time fighting with insurance companies, the state for services and social workers about funding. However, there are some things that are the same no matter our differences. I’m trying really hard to spend time thinking of my life as a more normal than different. Focusing on the differences, makes it really easy to slip in to a dark place. I’m determined to not live in a dark place anymore, and this made me realize our lives in many ways are very much the same.

  1. Parenting is EXHAUSTING

Children no matter their needs are balls of energy, and they whip, splash, and crash their way through their days. Most of my day, I’m chasing Von around making sure he doesn’t kill a cat, put dents in a wall, destroy the bath, throw toys in the toilet, or fall down a flight of stairs because he’s decided that he’s the next American Ninja. Part of the day is picking up the messes that seem to multiply faster than I can move. Dumping out a full tub of blocks, and removing every single toy from their respective bins is our favorite game. Then after he’s done it’s moving on to the next mess. While I know this is great for his development, I would prefer he not look at me with demon eyes and a smile as he lifts up his box of blocks and dumps them all on the floor. By the end of the day, I’ve cleaned the house 5 times following the tornado he leaves. I’ve been asleep by 9 pm every night since I left my job. I’m more tired now than I was holding down a full time job.

2. Temper Tantrums know no ability

Von still can melt down with the best of them, and I’m learning most 3 year olds are tiny little terrorists that we as parents are forced to negotiate with daily. When he doesn’t get his way, the tears start flooding. I feel like I’m in a SWAT car, desperately calling the fugitive, and asking him what I can do to make it stop. As the screams tear through my brain, I lose all ability to effectively parent. I forget what my name is, my eyes cross and I start to fall in a trance from the squeals. More often than not I find myself giving in to the demands because it’s easier than hearing the screams. I realize this is against every single parenting book ever written, but I live by the philosophy that we need to pick our battles. If giving him his toy will calm his screams, he’s getting the toy. Von may have developmental delays, but he can have a tantrum with the best of them. He can rock a 3 year old attitude like no ones business. There are days I love that fact that he’s very typically 3 years old.

3. Cuddles and Hugs are the same

My absolute favorite thing about Von is how loving and sweet he is with everyone. He has this soft and sweet personality, and he’s a lover of all people and animals. He loves to hug his stuffed animals, kiss them and he forces me ever so gently to hug and kiss them too. Through a lot of hard work and communication building, Von is also becoming a lot more gentle and loving with other children. The sweetest thing he does is always offers children hugs when we leave. The amazing part is he initiates the hugs. As far as the love I get, it’s the best hugging in the world. We spend a lot of time cuddling in bed before we go to sleep, and then again in the morning. Throughout the day he has to remind me a million times he loves me by kissing and hugging me. While we may have a lot going on, I’m fairly confident this is pretty typical for any child with their parent.

4. Feeding kids is HARD

I’ve not spoken to a single friend that has had an easy time with meals for their children. Even totally typical kids can be complete nightmares at the table. My friends constantly talk about how their kids were in love with a food for months, and then the next meal they refuse the same food. This is no different for us. Von is the pickiest eater in the world. We have about 10 foods he will eat consistently, and then it’s a crap shoot if he will even consider trying something new. It amazes me that apple sauce can send a child in to a tailspin, but don’t you dare offer it to him. It will only lead to your ear hairs burning off from loud squeals. Meal times end up being a lot of negotiating with a strong willed child that would rather play with cars than eat.

5. Watching the same Movies and TV shows is mind numbing

How many times can we possibly watch the movie Cars? Initially I thought it was such a cute movie. Full of great life lessons, and all about finding humility and friendship. Nope, now it’s a movie full of annoying voices, jokes that have lost their appeal, and squealing tires that grate my nerves. Von has the ability to wear out every single movie that I initially enjoyed. I know it’s just because he LOVES it so much. I’ve heard this same thing over and over from friends. How many times can Von watch these silly YouTube videos of children playing toys. Seriously, people make money filming themselves opening eggs, and my son watches these videos mindlessly for hours. I detest whoever started this phenomenon. Secretly I’m so jealous I didn’t come up with this idea because I could be a cushy millionaire living the easy life.

As you can see, life is actually not that different for us. Sure we go to the doctor a bit more, but Von is typically a 3 year old. Which is the best thing about being his parent.

 

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