Unless You Have Lived This Life You Can’t Possibly Understand

July 8, 2009 Written by Families and Caregiving , Women

Teresa’s story originally appeared as part of The NFCA Story Project. Teresa lives in Gastonia, North Carolina.

My name is Teresa. I have lived alone with my 12 year old son, Tucker, since he was born. Tucker lived despite the odds when he was born 8 weeks early, suffering fron IUGR, weighing 2 pounds 11 ounces, with a subdural hematoma.

I was almost 40 when he was born. He went through 3 brain surgeries and had spinal menangitis before he came home at 3 months old weighing 4 pounds 5 ounces. He was diagnosied with CP. Since birth he has had more surgeries than I can count. He has a VP shunt that has been revised at least 4 times.

The initial diagnosis was very grim and Tucker was never supposed to walk, talk, see or hear. I am proud to say that today Tucker does all those things. He wears a hearing aid and does have some vision problems that have to be closely monitored. He has received PT, OT and Speech Therapy since birth. We continue to work on speech impediments. After a Dorsal Rhizotomy and many orothopedic surgeries Tucker now walks with the assistance of braces on both feet and one leg. He uses a crutch for stabilization. He suffers from moderate mental retardation. He is unable to attend public school due to a compromised immune system. He does receive homebound services from the school system. He is currently learning to read and everyday I see him do something that he couldn’t do yesterday. I am so glad my other boys were almost grown when Tucker was born. I don’t see how parents cope when they have other small children at home. As hard as it has been, I do realize ours is a success story. My biggest worry is what will happen to him when I am no longer physically able to take care of him. Or worse, when I die.

Wish List:

1. I am desperately in need of some type of emotional support group. As much as family and friends may want to be there, unless you have lived this life you can’t possibly understand.

2. State and federal agencies need to be easier to understand and more accessible. A lot of people don’t know what kind of help is out there much less how to get it. Children are not stamped from the same rubber mold.Especially when it comes to special needs children. Each situation is different and should be looked at that way. Families need all different kinds of help. Until our government starts looking at individual needs a lot of needs will go unmet.

3. Like most caregivers I wish for a little down time. It’s not always enough to be physically removed from a situation. I sometimes find myself more anxious about being away from my son than I am when I’m with him. It’s really difficult to find people you can trust with your special needs child.

Facebook Twitter Email

  • Pingback: Blog Carnival: Women and Caregiving at Fem2pt0 : society’s issues + women’s voices

  • http://madamaambi.blogspot.com MadamaAmbi

    hi Teresa–I didn’t have women like you in mind when I started to organize an online support group for burned-out feminists, but you are very welcome to join us if you think it might help. I have known some people in similar situations and I know that they also worry about what happens to their child when they’re gone. I don’t know. They might be happy to share with you how they’re handling it…

    Check out my post titled Burnout Antidote and if you are interested, leave a comment so that I remember to get back in touch with you when we figure out where/when.

  • Gloria Pan

    Teresa, you have the emotional strength of Atlas who had the world on his shoulders and I bet you sometimes want to shrug. You have my deepest admiration. Since you joined the NFCA story project, you have obviously ventured online with your experience and voiced your desire for help. Have you found an online community to provide that emotional support you need? The Internet is so vast – surely the right group exists.

  • Sandy

    Hi Teresa. After searching for hours for some sort of blogging community for “my kind” of parents of special needs children, I had just about given up hope. Apparently, there doesn’t seem to be that forum available to a parent like you… a parent like me. My 8-year-old daughter was also born with a subdural hematoma. Her brain was pushed past midline, and 1/3 of her blood had pooled into her skull. She was given less than a 50% chance of living. But, she’s a fighter. We, too, have had PT, OT, ST, and Vision therapy since she was finally released from the NICU. Lexie’s official diagnoses include mental retardation, cerebral palsy, and scoliosis. She is not mainstreamed. She is not potty trained. She does not read, write, hold conversations, or follow directions. But, she DOES laugh, make requests, interact, and brighten my days (not every day, but most). Let me just tell you that I UNDERSTAND. Every single one of your wishes are my wishes also. I won’t tell you not to worry; that it will all be ok. I can’t say that to you because I don’t always believe it myself. What I do know is that I will get up every day for as long as I possibly can and take care of my little girl. When people stop and stare at her, I will continue to smile at her and tell her I love her. When she needs services, I will fight like a mother lion to make sure she gets them. I will try not to dwell on the absolutely paralyzing fear of what will happen when I am not here to care for her. I figure I have a good 30 years to work that out. And I will. And so will you. You will because you have to. I have lost track of the number of people have said to me “I don’t think I could do it” [raise my daughter]. I always respond, after the initial slap that their words deliver has subsided, that they would be able to do it because they would have to. You have the strength and the power. You know you do! You have made it for 12 years through the good and the bad, the ups and the downs. You just have to keep going. What choice do we have, really? Hang in there and KNOW that you are not alone.

  • Pingback: Caregiving Twittercast Coming Up on Monday at Fem2pt0 : society’s issues + women’s voices

  • Melanie

    Teresa,
    I do not understand what you are going through and could not even imagine. But I do understand your statement that unless you have lived this life you could not possibly understand. I have tried to relate who I am to others and find that no one has been in my shoes nor will they ever be. They nod and act as if they understand but because they have not lived my life and felt what I have felt then how could they? I can not even relate my life to others but somehow find myself able to relate to theirs which has made me a great friend and has enabled me to find my path in life. Not everyone can relate to everything in “my” life but there are sometimes people in this world that have felt some things I have felt or gone through and that is where I found support and understanding. I will pray for you and your wonderful miracle of a son. Have faith!

  • angela

    Teresa,
    you remind me of things I have been through, only I have been able to wlk though it with my husband.
    I could not image going though this with out him.
    My son is no where as bad as yours health wise, however I knew he was differant from birth but my husband did not want to here it, he did not cry when we brought him home I felt this was strange but was told by Doctors not to worry I was just imaging things. it was not untill he started school that every thing started to make since, and the people around me could no longer be in denial we all had to face it. My son had mild autism adhd & bipolar, I was divastated by this. but even before we had this diagnoise we could not leave him alone with people. he would run off he did not seem to get it when you ask him to do something. people would look at me in store’s as if I just had a spoiled child. God is my only true friend who I can talk to with out judgment. You have my prayers but also send out a prayer for me and other parents like us.