A Letter of Love to My Son With Hydrocephalus

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My Sweet Davey,

At the time I’m writing this letter you are 2 years old. You have endured more in your 2 years than what seems most people do in a lifetime. You have survived seven brain surgeries and a horrible infection called bacterial meningitis. Davey, you are my hero and don’t you ever forget it.

The day I was told you had hydrocephalus you were almost 14 months old. My heart felt like it was breaking, not because I felt there was anything wrong with you, but because I was afraid you would have to endure pain. I would trade places with you in an instant if it meant you could be pain-free. Those aren’t just words for fluff — I mean them with every ounce of my being.

For all the years I live, I don’t think I’ll ever forget the day we almost lost you. It brings me to tears even now, almost a year later. Davey, I want you to know I will do everything in my power to make sure that never happens again. I will never allow another doctor or surgeon to ignore my concerns when I know something is wrong. I am so, so sorry.

The Mighty

14 Comments for : A Letter of Love to My Son With Hydrocephalus
    • Marjorie Zeidner
    • June 15, 2017
    Reply

    My daughter is 36 and also had bacterial meningitis and almost died. She was in intensive care for 32 days. She’s had about 50 revisions and now has a shunt in her back. Life is hard.

    • Lisa
    • June 14, 2017
    Reply

    I am 50 and although my diagnosis has not been hydrocephalus I have subdural hygromas which result in the same result excess fluid in the brain. I was diagnosed (if we can call it that in 2013), I have 2 shunts and have just gone through my 11th surgery and many bouts of ill health caused by the pressure when not functioning. so when I read these stories and read this letter to this tiny little person who has no idea of the journey ahead of him I say a quite prayer to everyone out there that has this condition and find it an uphill battle just to keep functioning, however it is worth it battle through the bad times and make the good times as good as they can possibly get. God bless

    • Veralyn Hershey
    • June 14, 2017
    Reply

    Davey is so blessed to have you for a Mom! And you are blessed to have Davey. God gave each of you a gift in each other! Stay positive, keep fighting, and pray for a cure. To all parents out there with children with hydrocephalus–to the very young to older children–it’s the love for each other that gets you through each day!

    • Cheri
    • June 13, 2017
    Reply

    Beautifully written. I know just how you feel. I would switch places with my daughter in a heartbeat. I wish your son the best going forward. Stay strong!

    • Danielle
    • May 15, 2017
    Reply

    I am 41 and was just diagnosed two months ago. I started off with two temporal defect w/encephalocele repair surgeries. The headaches didnt stop so after a Lumbar Puncture i was finally diagnosed with Hydrocephalus. So meds weren’t working so I now have a VP shunt. It needs tweeked on the settings but so far so good. Never thought I would be battling with this as an adult. But staying positive is half the battle.

    • Dodo
    • May 15, 2017
    Reply

    Oh my god while reading that letter couldn’t keep my tears . It’s is so me .i have a 15 months old boy diagnosed with hydrocephalus since he was 5 to 6 month old .he is a 24 weeker premie .after a year he had another MRI done but the water is still there .but neurosurgeon hasn’t decided to do a shunt yet . She said the water will dry out.by 18 month he might get another MRI.but every time he get sick his head is swollen. Some people are telling me even if his fontanelle is close the water will stills be there . He is a strong boy even when he was at the nicu he is a fighters .soon as he was born I knew something was wrong .that feeling only mothers have that . Thank you again may god bless you and you child . Please if anyone as the same as my child I did some research but but never found someone who was diagnosed then the water dried out .

      • Liz
      • June 13, 2017
      Reply

      Please get a second opinion for your baby. My baby had brain surgery for hydrocephalus last August and thank God due to technology she didn’t need a shunt. She got a procedure called ETV (Endoscopic Third Ventriculostomy) and she is doing great! At the time she was seven months so the older the better. Please don’t hesitate. The water won’t dry out! Who says that??? Ask for an ETV

      • Amber Rowen
      • June 15, 2017
      Reply

      I have had Hydrocephalus since 3 days old. I am 41 now. I have had 69 Shunt surgeries & spinal meningitis. I have never heard of the CSF drying up.

    • Malissa
    • May 15, 2017
    Reply

    Our son was 15 when he was first diagnosed. Since that time, he has had 13 surgeries and bacterial meningitis too. He is 26 now, and it is a daily struggle with headaches and fatigue. BUT he never gives up. He has a wonderful attitude. He serves a church as a youth pastor. God is using him even though he struggles. For all hydrocephalus sufferers, moms, and dads pray and never give up. None of us understand this journey, but God has a plan for our babies- no matter what their age!!

    • Doreen
    • May 15, 2017
    Reply

    My son is 48 he had his first shunt at 4 months. The cause was meningitis at 2 mos. has had multiple revisions. Has two shunts in one on the left side and right side. one is a programmable shunt. He has a lot of headaches. But he has made it through all these years. It is a struggle but we love them & give them all the support we can.

  1. Reply

    This is beautiful! I, too, will advocate for your son, or anyone facing the challenges of hydrocephalus. I have been close to death a few times through my ordeal with this condition. Life is precious, valuable, and oh so short! This letter shows a truly unbreakable bond. God bless you all!

    • Karrie Tenenbaum
    • May 15, 2017
    Reply

    As a Teacher of children with multiple disabilities, as well as medically fragile needs, My heart is with this wonderful Mother. I wish her a blessed life with her son.

    • DONNA
    • May 15, 2017
    Reply

    Brilliantly said an honor to read this and thank you that’s exactly how I feel about my son with hydrocephalus thank you again

    • Peggy Powe
    • May 15, 2017
    Reply

    This is such a beautiful letter. It could have been written by me. My son is 27, his first surgery was at 2 . The doctors did not listen to me either, finally they diagnosed him correctly. He has three shunts, many surgeries, also a serious brain infection at the age of 16, three very difficult months in the hospital. He just had a complete revision of all three shunts and is okay. He has had to deal with headaches and many trips to the hospital. But, my son has always been positive and remains strong. The love and support of the family is so important. I will always be there for him and he knows that.

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