Without a Crystal Ball

Our Journey through Chronic Illness & Autism

When I became pregnant with my son, I had this strong feeling that something was wrong. I would constantly feel like we were on the brink of something really big, and I didn’t know what it was. It started early with a very difficult pregnancy. My uterus wasn’t cooperating, my liver was completely out of whack, and then add the bulging discs in my back and I was hot mess. My child ended up coming in to the world early, and he was born without a peep. Not a single cry brought him in to the world, and he barely cried for the first 3 months of his life. Doctors worked tirelessly to sort through what was going on with him, and we hoped and prayed that everything would work out.

Fast forward three years later and we sit here with this amazing little boy that has taught us more about the human fight and drive to live than anyone else. He’s been diagnosed with Panhypopituitarism, Chiari Malformation, Macrocephaly, Enlarged Ventricles in his brain, and most recently Mitral Valve Stenosis. All of these are big diagnosis, and any one of them could put him in the hospital in a life threatening situation. However, we still manage to get through most days unscathed, and we still have just as many giggles and hugs. I’ve learned so much about life and mothering by being with him, and I wanted to shed some light.

  1. The human spirit and drive to live is ferocious

We’ve been on the edge of life and death more than once with my son. He’s been on life support, coded, and bagged back to life. We’ve seen him almost leave, and we’ve watched the drive to come back. It’s amazing to me every single time it’s happened how much the human spirit wants to live. Each and every time, he’s been stronger and braver in his fight. When new diagnosis are introduced, I have a harder time with it than him. I know partly it’s because he’s young, and I know the other part is that he knows no different. Instead of being bogged down and depressed by feeling crummy, the kid fights and smiles to play every single day. I know he’s in pain every day, loses his breath, and needs to stop to catch up but he’s always so happy to be here and alive.

2. I have no control over what is going to happen

When the diagnosis started flooding in, I felt like a tidal wave was going to take me out to the deep sea. There were days I was floating, swimming and praying for rescue. Then one day it hit me that nothing is going to change this, and fighting what is happening will only make my reality more difficult to manage. Ultimately the only thing I can do as his mother is learn about the disease, the treatment and trust doctors to guide us to making the best decisions. We have been pummeled lately with diagnosis and harsh realities, and I’ve come to realize no matter how much I fear what it this is not going to change. I can either embrace it, pray for the best outcome, and enjoy the time we have. Or I can live in fear and sadness. I pick happiness every day. Letting go of the control is the best way I’ve learned to cope.

3. My friends and family don’t always understand

Most of the people in my life haven’t been in this situation with a sick child. They don’t always know what to say or how to handle situations, but most of them do their best to manage the adversity. I use to get upset at things that were said to me, and then I reminded myself that there was a time that I didn’t know what to say. Unless you are in this situation, you won’t understand and expecting you to understand is actually really selfish on my part. Instead of finding reasons to be mad at you for not supporting me, I’ve learned that sometimes people just do their best and that is all you can hope and pray will happen.

4. I can’t do it all

I’ve learned a lot about my own limits as a person. It has not always been easy for me to ask for help, and there are a lot of times I won’t ask for help. I’m getting better at recognizing when I need a break to manage my own emotions in the process. There was also a point when I realized balancing work and a sick child was no longer possible. Being in this role, has taught me about being a lot less selfish. My goals and dreams will be put on hold to manage my sons care, and I realize that his life is more important than my own career aspirations. Life has a funny way of showing you when you need to slow down and enjoy the show.

5. I find happiness in the simplest places

When I was constantly focused on myself, I rarely stopped to smell the roses or enjoy the simple things. These diseases have taught me to slow down and enjoy the very simple things about the world. Life isn’t about what you have or the things you own. It isn’t about the money in the bank. Life is about this beautiful journey in this world that is full of amazing miracles every day. I see miracles happen every day as my son battles this nameless disease. He smiles, laughs, plays, and enjoys life when everything about the disease is saying he should not be happy. We play, laugh, and cuddle, and that is the best gift I’ve been given. There are times I don’t know how long he will be here, and I’m not going to waste my time not enjoying the time he is here. The cleaning and laundry will wait if it means we can race cars down a track. I’m not taking any of this for granted, and it’s given me a peace I can’t even describe.IMG_3321



4 thoughts on “5 things That I’ve learned about parenting a Medically Fragile Child

  1. Brandee says:

    I loved every single point. Your words have brought me much comfort. I never thought I’d be a mother to a special needs child, autism and nonverbal, and I get very anxious for our life and future.
    Your words will resonate in me to ENJOY HIM. God bless you and yours. Go race cars. Vrooooooom vrooooom.

    Liked by 1 person

  2. Claire says:

    I too have a 3yr old with Panhypopithyroidism, what wonderful boys we have, truly changed my world and taught his older siblings so much. Our world is walking a fine tightrope of allowing them to be children while frantically protecting them! Thank-you for your words, wonderful to know others understand x

    Liked by 1 person

  3. Lindsey says:

    Although our children are very different, it sounds like we have been embracing many of the same lessons. My “Failure-to-thrive” kiddo has stumped genetics. But, now that she is much more stable and her various GI disorders managed I truly enjoy her. We stay up late watching Food Network while I finish getting the last of her meds and water in her feeding tube. I too don’t have a crystal ball or magic wand to make it all better, but I will enjoy every blessed day with her.


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