That Feeling of Helplessness

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Mom of daughter with hydrocephalusBy Erin Corbalis
Guest Blogger

Do you ever just feel that “oh s*%#” feeling? But you can’t talk about it because nobody understands how helpless you can feel sometimes?

Nobody understands that I’m not seeking validation. I know I’m a good mom with a very active interest in keeping my kid safe. But no amount of good I do can change the fact that I’m not in control of this situation. I am, in fact, helpless. If something were to happen there’s a slim chance there is anything I could do to prevent it. So here I am alone with my worry, because I don’t want to hear, “It’s okay. You’re an amazing mother. You got this.”

Because I don’t.

If I really “had this,” she would be safe. She would be cured. I can’t treat her. I can’t so much as diagnose her. I am dependent on others to be the best for my baby. Yes, I stay on top of it. I stay overly cautious. When I’m worried, people say things to try to make me feel better. “It’s probably just a cold. Maybe she’s just having an off day.”

You have to let me overreact.

For parents like us you never know when spazzing out will save our child’s life. It’s every parents’ job to keep their child alive. But some of us are in charge of saving our children’s lives. That’s a heavy thing. People mean well but honestly…you can’t validate my feelings as a mother. I’m not worried about my parenting abilities. I’m not worried about the love I have for my girl. You can only invalidate my fears about my child and it isolates me. The word “rarely” is of no comfort to me. I’ve been that 1 in 100,000 … or whatever the heck. That thing you read about that “happens to other people.” I do try to stay positive and not let the possibilities swallow me whole. I just wish sometimes I could share the fear. It’s a lot to carry. Am I alone in this?

I need Hydrocephalus Awareness because it’s something I CAN do. But it’s not just important for me. It’s most important for my baby and others like my baby. Every single one of them is important. I want to make a difference. I would love to hear other’s stories. You can share your story through the Hydrocephalus Association Share Your Story project and/or on my Facebook page, The Legendary Hydro Warriors.

There is so much to Hydrocephalus. Everybody’s story is a little or a lot different. The only way to learn more is to listen to the stories.

19 Comments for : That Feeling of Helplessness
    • Troy
    • March 21, 2017
    Reply

    My Mom went through the same thing w/all of my 9 surguries by the age of 4 Erin.I know she had the same feelings your having.The unknow can be awfully scary when raising a child w/special needs.She felt so helpless at times not knowing what to do to make my pain go away.It broke her heart to see her baby screaming & trying to claw through the oxygen tent to get to her because I was so scared & didn’t understand what was going on.That feeling of hopelessness watching your child suffering in so much pain & not being able to help is heartbreaking & terrifying for both the baby & the Mom.She has had insomnia my whole life because of it.I can only imagine what your going through after hearing all the stories from my Mom of what she went through.I know things will get better.There will be bad days & very bad days,but the good days will overshadow.Stay strong Erin & take ease in knowing that God is with you & your baby & HE will help you get through this.💙🙏🏻

    • Emma Taylor
    • April 30, 2016
    Reply

    Thank you for sharing your stories – I have just found your website / blog, needing support. My daughter was diagnosed with a brain tumour aged 3 and developed hydrocephalus after her surgery and has a shunt which blocks frequently. She is now eight and continues to suffer with daily headaches, fatigue, and intermittent personality change and rages that are so frightening for us all. I feel all of your feelings and it is so nice to find other parents out there with the same constant fears. I live in the UK and am struggling to find other parents in a similar place, and it feels so isolating. I find it hard to get some of the doctors to understand the severity of her symptoms and for them to acknowledge that her behavior difficulties are related to her shunt and hydrocephalus and am so fearful that I should / could be doing more for her but don’t know where to turn for help.
    Thank you for enabling to share my fears
    Emma

    • Evelyn Lucas
    • March 17, 2016
    Reply

    You couldn’t of expressed yourself any better. My daughter was born 26 years ago. She was diagnosed when I was 6 months pregnant. First surgery when she was 3 days old. Blind in one eye. 28 revision since then and another shunt put in 6 months ago due to a porencephalic cyst. Fear is a common feeling for me. In fact it is “normal”. She works 3 days a week. Her days off, she takes a brain break. Thank God her employers work with her. She is on medicine and gets Botox injections to help with the headaches that she lives with constantly. She has a better grip on her situation than I do, at times. She is a “Hydro Warrior”.

    • Elaine
    • March 16, 2016
    Reply

    My daughter was diagnosed 22 years ago at two months of age. Follow your instincts-twice I overreacted and led her neurosurgeon to look further. The first time there was a slit in her shunt tubing that could not be seen on films causing her to have intermittent lethargy and vomiting for two months. The second time her low grade fever and lethargy were considered flu initially, but when she continued to not be herself we discovered she had a shunt infection. After several years and no further problems, I stopped planning vacations near major medical areas. The worry does not end but you learn to react quickly when needed Others do not understand how serious a shunt complication can be for your child. Never feel guilty for trusting your instincts and being vigilant. And when the hospital staff says you can’t do something that will make your child feel better during tests/treatment convince them that it can be done! I learned to handle my daughter extra ventricular drainage system and adjust it when she was learning to walk so she could play just like other kids My daughter amazes me every day with determination to live her life to the fullest!

    • PERRY OWENS
    • February 23, 2016
    Reply

    My Name is Perry Owens and I have Hydrocephalus. I found out about two years ago that I have this water on my brain an I needed a shunt in order to fix it. The funniest thing is I had gone to the doctor for different things that was a side affect of this disease but I was told “oh that comes with getting older. One time I had gone to the doctor for a different thing and he sent me for an MRI with dye in it, the doctor told the X-ray technician to check for everything. Well the next day I got a call from the technician telling me you need to see your doctor as soon as possible because I see some water on your brain. Well my doctor made appointment for me to see a Neurologist surgeon. He told me I needed to have surgery in order to correct my Hydrocephalus. I was afraid not understanding how this happen to me cause I was 56 years old already. I’m constantly look for an answer’s What is this really? how did I get it? why did it take so long to find out I had it? Well, all I can say now is that it is God who has kept me all these year’s and he will keep me safe with him. But I do still wonder about it all.

    • Jackie
    • February 20, 2016
    Reply

    Networking with others that travel the same path is very helpful. When we joined the Hydrocephalus Association, we no longer felt alone. The materials provided to educate us, him, and others about my son’s condition were very helpful. Going to national conventions are uplifting experiences. We learned that although friends and some family members may isolate you for what they do not understand; there is compassion and support in the hydrocephalus community.

    • Mina
    • February 19, 2016
    Reply

    This is exactly how I feel, still 21 years later. I look at my son and I know that he could be a ticking time bomb and I have no control. I can’t fix him, can’t make his disease go away. I just pray and hope that nothing happens to him. And I keep the fear, tears, anxiety to myself.

    • Susan
    • February 19, 2016
    Reply

    Not knowing what is wrong if your child is acting out of the norm is the worst feeling in the world! It’s the definition of helpless but not hopeless. My boy is 17 and there have been many scares along our journey. Our Scottie amazes us daily with his learning although we will never hear him speak. Just keep on lovin! To one person you are the world!

    • Narda Holguin
    • February 19, 2016
    Reply

    Yes! I feel the same way. I was just told my two year old daughter has to get a full MRI because the doctor saw some extra tissue over her “pathway.” Gosh it is hard because I don’t know what it is, i have no idea, and overall no control. I see her act without a care and I try to feed of off that but the nerves eat me up. I do, I do feel like life decided to swing me a curve ball that will never straighten up. Realizing I have zero control over things burdens me because I want her to have the best life ever and I really have no say over it. Thank you for sharing your words with me. Now more than ever they resonate and I know we are not alone.. we aren’t and we have to stay strong even if it requires for us to cry often.

    • Chuck Pope
    • February 19, 2016
    Reply

    Erin,
    You are not alone. Others actually have fears and concerns too that are hard for them, although they are not the same as a Mother’s burden for her sick baby. in the case of me and my grandson I pray to God a lot. He has also had lots of others praying for him too. That has helped me with my fear and feelings of helplessness. Today you had someone pray for you and your daughter too

    • Angel
    • February 19, 2016
    Reply

    I can’t thank you enough for sharing this. My little Noah will be 9 years old this July and his struggles just seem to become bigger obstacles. My husband and I are always at the white board as we refer to. Is this a “normal” struggle or just a Noah struggle? How do we help him. Is this just a cold or something more? Let’s not risk it. Let’s go to children’s, just to be safe. I’ve had friends tell me in overreacting by taking him to the emergency room. Honestly, I don’t care what they think. They simply don’t understand. It could be that one time I don’t overreact that it’s the wrong choice. I’ll forever overreact when it comes to his life. Shunt failure is very serious and I won’t play risk when it comes to my son’s life. He was born with congenital hydrocephalus, had his first surgery at 5 days old, and a revision at 3 months old. He’s had multiple eye surgeries. A brain cyst. Adhd… being delayed in school and we held him back in second grade. He’s still not progressing. We’re consistently trying to find ways to help him retain information and sometimes he does. In those moments, we do our happy dance! Thank you for this. For validation that I’m not the only one…

    • Chrina serrant
    • February 19, 2016
    Reply

    Thank you, my five month old daughter has hydrocephalus and I have been through so much with doctors. Everything you have said is true I’m very protective of her and I tend to spaz out on people because they tend to want to brush us off, not meaning to but it happens. She is my first child an her father’s second so hydrocephalus is new to us.

    • Geri Spencer
    • February 19, 2016
    Reply

    It has been almost 40 years since my little girl was born,and guess what? We continue to THIS DAY to live as if something might happen with her shunt or the other problems which surfaced over her growing years. But I know her MAKER-God and he has always been there for us.

    • Sheri
    • February 19, 2016
    Reply

    I’m the grandmother. Until it happened to me, I honestly thought it wasn’t quite as bad as being the mother. But watching my daughter, my heart, go through this fear and pain daily with no real answers is double for me. There is no pain greater than that of your child

    • Angela
    • February 19, 2016
    Reply

    I understand completely how you feel. I found out my daughter would be born with hydrocephalus abd hydronaphrous when I was 20 weeks pregnant, I spent that whole day crying uncontrollably. I never heard of these at that point and was unsure what and how it would affect my child. It has been a very scarey road for us, we have went through two surgeries where we also found out she has a heard condition called ASD. We have also had a reconstructive eye surgery due to the hydrocephalus. I appreciate hearing from others like you.

    • Monica Hall
    • February 19, 2016
    Reply

    Nailed it!

  1. Reply

    Hi I am zenya and I have hydrocephalus I have had it all my life since I was 6weeks old and now I am 36 I have had it replacement once and the valve once as well that is 3 years ago

    • Kara B.
    • February 19, 2016
    Reply

    I understand how you feel! My two year old daughter was diagnosed with Hydrocephalus and had a VP shunt placed about 8 months ago when she was 16 months old. Before her surgery, she was very easy going and didn’t get worked up about anything–but since her surgery she has severe separation anxiety and generally dislikes anyone she doesn’t know.

    People can be dismissive (in an effort to be reassuring) as it being a normal toddler thing, and it’s true, that some toddlers go through separation anxiety or aren’t very friendly. But this is so different than what normal kids go through. She has certain personality quirks that are a result of the hydrocephalus and being at the hospital a few times! (I have 3 older children so I feel like I know what “normal” looks like!)

    And it’s true, people can be dismissive about other “normal” things too, but for us parents of young kids with hydrocephalus we have to stay vigilant–their condition is always floating at the forefront of our mind when something doesn’t seem right. Is this fever from a virus or is her shunt infected? She’s been crying and throwing herself on the floor, is it a temper tantrum or a headache? She didn’t eat very much of her dinner, is it the normal toddler ‘I’m not eating anything’ or is she nauseated? Sometimes she just turns the wrong shade of green.

    From one mom to another–stay vigilant, trust your instincts, and love your child well. We aren’t over-reacting by going to the hospital for a fever, or vomiting (especially fever and vomiting!) or because our child has been crying and we can’t figure out why. Our situation isn’t normal, and there will be a time when it really will save our child’s life!

    • Lucinda Heavenridge
    • February 19, 2016
    Reply

    I completely understand because that is how I have felt for years. Thank you for showing me courage in putting your feelings out there. I’m not the only one who feels that fear.

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