Acquired Microcephaly

Laura - posted on 09/24/2009 ( 17 moms have responded )

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Does anyone have a child with acquired microcephaly?

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Heidi - posted on 11/09/2010

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Our daughter, Gretchen was born with microcephaly. She is 18 now and a senior at our local high school. She is very athletic, runs with the XC team, skies with XC ski team, and runs in track. She is very competitive, and made it to State in XC running and Track last year. Her challenges are slower processing speeds, and anything related to math or numbers is very problematic to her. She has passed our Graduation Qualifying tests for our state in Reading and Writing however, and we are waiting to hear the results of her latest attempt on the math portion. . So she has vastly exceeded the initial prognosis that we were given when she was first labeled as "delayed". She hopes to work with animals one day. We feel blessed that she is in our lives, and know that God has a plan and purpose for her. I would be happy to "talk" via this site to anyone who has a child with microcephaly. We feel like there has been no one else to talk about raising a child with this, so we have parented her totally by "braille" with the help of God. Perhaps I can encourage someone else?



Sincerely,

Heidi Winter



PS. We were told that this was caused by a recessive gene. We also have a son, two years younger, who is just fine!

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Margie - posted on 06/02/2013

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wow I am so glad I found this website I have a special needs son and its helps to see that I am not alone out there he has microcephaly seizures and pica

Lonnie Joe - posted on 05/29/2013

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My wife and I are adopting a child with acquired microcephaly in two months. She also has severe seizures. I am thankful to find others who have been through this. I feel at the mercy of others as to how she turns out. Maybe this is not the truth. We adopted other children that had special needs, and worked hard. They are doing fine overall..

Laura - posted on 11/24/2009

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Quoting Katie:

I read this on someone's profile and it just touched my heart.
Mothers of special needs babies
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter, patron saint, Cecilia. "Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," says God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it.
"I watched her today. She has that feeling of self and dependence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world, and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness. "
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see . . . ignorance,
cruelty, prejudice . . . and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, pen poised midair.
God smiles. "A mirror will suffice."


I have this one on my daily reading list too!!!!! I love it! Thanks for posting!

Katie - posted on 11/24/2009

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I read this on someone's profile and it just touched my heart.
Mothers of special needs babies
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter, patron saint, Cecilia. "Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," says God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it.
"I watched her today. She has that feeling of self and dependence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world, and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness. "
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see . . . ignorance,
cruelty, prejudice . . . and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, pen poised midair.
God smiles. "A mirror will suffice."

Deborah - posted on 11/24/2009

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my almost 6 year old daughter, aria, was diagnosed with microcephaly at 9 months old.

[deleted account]

my oldest has microcephaly, not sure what you mean by acquired... assuming it means not genetic.. mine suffered a brain injury at birth and they were worried about hydrocephaly and instead she is microcephalic. you can email if you want to talk further.



Jamye

Laura - posted on 11/22/2009

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Mason will be 2 1/2 in December......his list of medical issues includes: aquired microcephaly, seizure disorder, cortical blindness, refux, has tubes in his ears, nissen, G-tube, abnormal tone:hypotonia, severe developmental delay ( functions at newborn-3 month old level), myoclonic jerks, tonic/clonic seizures, gelastic seizures, infantile spasms, trachial malaysia, nonverbal, he ha never hit any milestone....doesnt talk, walk, crawl.....really doesn't respond to anyone or anything.........he has had extensive genetic and metabolic testing done at Cleveland Clinic.....I was told by his genetic Dr a couple months ago at this point there is no diagnosis for him...and they would put him in their computer system.........I was also told that every day is a gift with him........I have learned to live every day as if it is the last and enjoy every moment with him.....some days are better than other obviously.....some days are very frustrating.......but I have come to realize a diagnosis is just a name and it won't change who Mason is........he is a very sweet little boy!!!!!



Thank you to everyone for posting....I appreciate all your comments:)

Barb - posted on 11/22/2009

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I read this many years ago and I too found it to be valuable. Kind of sums up dreams diverted.

Sally - posted on 11/20/2009

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WOW, what a wonderful article. Thank you for posting that Sandy. And let me just say

I love all that Holland has offered me!!!



And Laura my son will be 2 next week and he was diagnosed with microcephaly.

Laura - posted on 11/20/2009

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Quoting Sandy:

I am a mother of a 15 year old special needs girl. I found this "Dear Abbe" article many years ago and it has helped me through some difficult times. Here it is: Welcome to Holland. I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It's like this. . . When you're going to have a baby, it's like planning a fabulous vacation trip-to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo's "David." The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant says, "Welcome to Holland." "Holland?!" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It's just a different place. So you must go out and buy new guidebooks. You must learn a whole new language. And you will meet a whole new gtoup of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you look around, you notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about a wonderufl time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's where I had planned." And the pain of that will never, ever, go away, because the loss of a dream is a very significant loss. But, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
I hope this helps because I have come to absolutely LOVE Holland.





Sandy......I LOVE Welcome to Holland........I have a copy on my nightstand....I ready it most nights before I go to bed.......kind of puts it all in perspective.......

Sandy - posted on 11/20/2009

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I am a mother of a 15 year old special needs girl. I found this "Dear Abbe" article many years ago and it has helped me through some difficult times. Here it is: Welcome to Holland. I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It's like this. . . When you're going to have a baby, it's like planning a fabulous vacation trip-to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo's "David." The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant says, "Welcome to Holland." "Holland?!" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It's just a different place. So you must go out and buy new guidebooks. You must learn a whole new language. And you will meet a whole new gtoup of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you look around, you notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about a wonderufl time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's where I had planned." And the pain of that will never, ever, go away, because the loss of a dream is a very significant loss. But, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

I hope this helps because I have come to absolutely LOVE Holland.

Katie - posted on 11/20/2009

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my daughter has microcephaly. she is only 2 months old. we have been going through a lot of tests and will be getting an mri soon.

Sandy - posted on 11/19/2009

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I was told that Kayla would be a "vegetable" when she was diagnosed at two months of age. I was told that she wouldn't crawl, walk, talk, feed herself, or do any of the "normal" things. At 15 she attends high school, walks, talks, feeds herself, bowls on a league, rides a bike, does competitive cheerleading, and a host of other things. In my case, I listened to what her doctors told me. However, they were very wrong about her prognosis. Although she is developmentally delayed, there are many wonderful things that she can do. She has a difficult time with reading (which is in all subjects) and math so she is in a Multihandicapped Classroom with other students who perform at her ability level. She has been in occupational, speech, and physical therapies for the past 15 years; on and off with occupational and physical depending upon her needs, but for the past 12 years with speech. I just wanted to share a little about her.

Laura - posted on 11/17/2009

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thanks Sandy for responding! No real questions as of yet.....just wondering if there was anyone else out there in my shoes :)

Sandy - posted on 11/16/2009

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My 15 year old was diagnosed with microcephaly when she was two months old. If there is something I can help you with, let me know.

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