How Special Needs Children Change Your Life

I decided to travel down to my hometown in Virginia (just outside of DC) to see the birth of my sister’s first child.  After having two kids myself, and absolutely loving the days I gave birth to them, I wanted to share in this miracle with my sister (without having to endure any pain myself this time).  She said I could be in the room with her, and I was so excited to help her and see her first child be born.  I think if I could have another occupation in life, it might be to be a labor and delivery nurse.  I know it wouldn’t all be roses, but being able to witness so many miracles might be worth the hard times.

It was early in the morning when we went to the hospital.  My sister got hooked up to all the monitors and was getting ready for the big event.  I had both my kids and our parents in the room as well.  They would have to leave after the labor progressed to the pushing stage.  Unfortunately, it never did get to that stage.  My sister’s baby’s heart rate was dropping, and they needed to perform an emergency c-section.  Obviously, I was not allowed to be in the room.  I waited with my kids until we saw sweet little Evelyn get whisked away to the NICU.  I had just enough time to get one quick picture.  She was a little blue after the birth, and the doctors said she needed some attention.  Then, the wait began………

(Evelyn in the NICU)

I felt so sorry for my sister.  Evelyn was being looked at for about four hours before they even came to see her in recovery.  From previous experience, I know the feeling of giving birth and wanting to hold on to your little one and stare into his or her eyes.  My sister was feeling sad, worried, and detached from everything.  I wish the doctors had been more attentive to my sister’s needs and given her some reassurance and answers quicker.

Finally, after the doctors came in, she got a few answers.  First, her daughter was breathing well and she could see her soon.  Next, she has three holes in her heart, a straight line across her palms, signs of low muscle tone, and a protruding tongue.  Finally, they said, “We think your child has Down Syndrome.  We will know in a few days after the blood tests come back.” Silence, shock, tears………  My sister was 29, no signs or risks of having a child with Down Syndrome.  It was quite shocking for everyone.

There are two things I remember clearly after that.  First, it took my sister all of a minute to seem at peace with everything.  She was so strong, and just said, “This is my daughter, I love her, she needs me, and we will do everything we can to make her as healthy as possible.”  Since then, my niece has undergone heart procedures and is doing well.  She is 3-years old now.  Secondly, I remember running out to Borders to try and find a book for my sister about Down Syndrome, and I found one with stories that mothers wrote.  It was titled Gifts.  One particular story struck us and as we read it aloud in the hospital room, and to everyone it seemed to make a difficult situation a bit better.  The funny thing about that story is now my sister is very close friends with the mother who wrote it.

Evelyn is my niece.  She is a smart, fearless, sweet older sister, who just happens to have Down Syndrome.  She is a part of our family, and is just like the rest of us.  She will have hopes and dreams when she gets older, and she will live life to its fullest.  Of course,  raising a child with special needs can be tough and there are many challenges and health risks she will have to overcome and endure throughout her life, but she has just as much hope and possibility as anyone else. She is currently thriving and progressing well and has been fortunate enough to participate in wonderful early intervention programs in the DC area.  She attends preschool 5 days a week, knows her ABCs, counts to 10, knows all her colors, sings, dances, loves tee ball, swimming and being a big sister.  We are truly blessed to have Evelyn in our lives, and I am truly proud of my sister for being a strong and proactive mother.  Evelyn is where she is today thanks to my sister and the care she gives her.

(Evelyn with all her cousins)                      (Evelyn – Age 3, with cousin, Kendal)

So remember, even if things seem shocking and scary when you are not expecting certain news in your life, it might turn out to be a blessing and a gift.  The day Evelyn was born, the dream my sister had of her future and family was gone forever, but a new vision and dream began, one that included patience, understanding, sympathy, hope and awareness of a world we would never have known. The world of disability, one that changes your life forever and makes you truly a better person.  The next time you come across a person who may have Down Syndrome or any disability, remember, they too are worthy of your greeting, your smile, and your friendship.  It is probably best described in the article, “Welcome to Holland,” which is a must read if you have not read it already.

(My sister’s family)

Do you have family members with special needs? How was it when you first found out that they needed extra help?

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Kristin Wheeler

About Kristin Wheeler

Kristin Wheeler is a stay-at-home mom of a 7 year old daughter and 4 year old son. She was previously a teacher for 8 years (in Virginia, Oklahoma, and California). She taught elementary and middle school, with a focus in technology. Kristin received her Bachelor's degree in Psychology and her Master's in Middle School Education from George Mason University in Fairfax, VA. Her husband is a professor at The University of Rhode Island.