Does A Diagnosis Define A Special Needs Child?

Discovering you are pregnant brings a sense of euphoria and a hope for the future. You imagine your child’s first day of school, first bike ride, attending high school and college, graduating and getting married. You rub your belly and smile.

Arriving at your twentieth week sonogram the excitement of discovering the baby’s gender keeps you grinning from ear to ear. You secretly wish for a girl but will be delighted whatever the outcome. After the sonogram, you meet with the doctor to receive the good news.

He greets you but is not smiling. You are told the baby is a boy but there is a problem. Your heart pounds. What could be wrong? Can it be fixed? Should I get a second opinion? Joy turns to disbelief.

I experienced this drama in my own life. My son was born with a rare and considered lethal form of dwarfism called Thanatophoric Dysplasia. He is now ten years old. Looking back, I wished I would have fully understood something our doctor said.

Early days of the NICU
Early days of the NICU

About a year after my son’s birth, one of his neonatal doctors told us that all children are different. That is so true. Children with autism have a range of symptoms varying in severity based on where they fall on the autism spectrum. I believe Downs Syndrome children also can have a spectrum of symptoms and that each case does not necessarily display all aspects of Downs Syndrome. One mom shares her own experience of this in the following article. www.themighty.com/2015/04/my-daughters-are-on-opposite-ends-of-the-down-syndrome-spectrum/

 Of the 53.9 million school-aged children (age 5 – 17) in the U.S…about 2.8 million (5.2 percent) were reported to have a disability in 2010. www.census.gov/prod/2011pubs/acsbr10-12.pdf

And so it is with Thanatophoric Dysplasia (TD). One child requires life-long ventilation while another does not. One child may have progressive hydrocephalus while another does not. One child may have seizures while another may not display any seizure activity.

So the doctor was right, our child is different. Though he required a ventilator, he has been off the ventilator for over two years now. Oh, what I would have given to know this information in 2005/2006. He does not have progressive hydrocephalus or seizures. (There are other TD traits my son has which I’ll share in another blog.)

Belly Laugh
Belly Laugh

One thing is constant though: a mother’s love. Whether a child is on one end of the spectrum, in the middle or on the other side, love runs deep. My love, steadfast and strong, sees past my son’s diagnosis to the sweet boy I have been given. Many of my relatives, co-workers, and friends met Samuel in the hospital. There were many probes and wires attached to him. However, when you looked at him in the crib, the wires simply melted away into the background.

Sweet Smile
Sweet Smile

His smile captivated everyone, especially his mother’s heart.

So if you find yourself newly diagnosed with a special needs child, be encouraged. You will surprised by the strength, courage and most of all the intense amount of love you will have for your child.

Does your child have special needs? How does your love overcome their diagnosis? Please share, I’d love to hear your story.

 

By Evelyn Mann

Author, A Miracle In My Living Room

 

A Surprise Visit To The Hospital: A New Normal

September 12, 2015

How I Battle The Fear War

September 12, 2015

7 Thoughts on Does A Diagnosis Define A Special Needs Child?

  1. Very beautifully written. I remember that day so well; and the times thereafter visiting in the NICU. I think this will be a consolation to any woman who may have lost her child. It explains how in every situation, each child is unique with different outcomes but a mother’s love is always unconditional. Whether we get to love them for one day, one year or beyond, we give our 100+% and they live forever in our hearts!

    And every child is a gift from above.

    “Behold, children are a gift of the Lord, The fruit of the womb is a reward.” Psalm 127:3

    Reply
  2. Those words ” I wish I’d known then’ ring true I believe for all of us mothers out there! And you’re so right, when you’re with Samuel all you can see is what he can do and it’s so easy to overlook his disability. It is impossible not to laugh when you are with him! Beautifully written…

    Reply
  3. Samuel is a blessing from the Lord above. He is such a joy and his smile is contagious.
    And it shows in the love that you have given him.
    Thank you for sharing your heartfelt story.
    Many blessings ! Julie

    Reply
  4. Thank you for sharing your blog post. It was heartfelt. There are many documented cases where people were diagnosed with something and the diagnosis didn’t define them. The thing that overcomes the diagnosis is LOVE. The kind of love you described is PERIOD love. Here it is explained in my blog post: http://faithbooksandmore.com/index.php?option=com_content&view=article&id=244:if-because-but-period-love-by-nicole-antoinette&catid=17:blog&Itemid=104

    Reply
    • Thank you for sharing your post. It fits well with this blog topic. I so agree, as a mom, we love PERIOD.

      Blessings, Evelyn

      Reply
  5. What a beautiful and inspiring post! Thanks for sharing your story and I agree, a mother’s love is always constant. I love that picture of him smiling, definitely a happy and loved child!

    Reply
    • Thank you for commenting, Bernadyn. So glad you can tell this momma’s heart for her wee one.

      Reply

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