How Special Needs Children Change Your Life…

I am sharing is a personal story about my niece

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………
 
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.
 

(My sister and Evelyn)

 
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 4-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.
 
(My sister’s family)
 
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.
 
Do you have family members with special needs? How was it when you first found out that they needed extra help?
 
Kristin

Comments

  1. Evelyn is beautiful. You can see the strength in her eyes. Thank you for sharing this.

    We do have special needs kids 3 of them, it has been hard but rewarding at the same time. I found out when they were older it was a shock but reassuring that I wasn’t a bad mom there was a reason behind everything. It took courage and a strong support system to get through it and learn how to parent your child.

  2. Thank you for your comment Tamara. Thanks for sharing as well. I think you’re right the the initial shock is the hardest and then you learn to be strong and support kids the best you can.

  3. She is beautiful. I worked with children with disabilities for a short time. There was a little girl with down syndrome that I will never forget. She was so loving and sweet. Definitely a gift from God!

  4. I can’t believe they left your sister in the dark for 4 hours! That’s unacceptable. On a brighter note, what a beautiful baby! I think that those with disabilities soften us and make us more aware. They are definitely worth getting to know.

  5. Thank you MommyMandi! She is so sweet and innocent. And yes Alyssa, the waiting in the dark and not knowing was awful. She just wanted to hold her baby. It was a difficult day all around.

  6. Beautifully written. Thanks so much for sharing your family’s experience. There is a poem that your sister may like – I believe it is called Heaven’s Special Child. It was given to my husband a few years ago and it meant a great deal to him.

  7. What a beautiful post. Thanks for sharing this part of your journey! Evelyn is a lovely young lady!

  8. Beautiful post. Beautiful child!

  9. Thank you guys!! and I will check out that poem MamaDoesItAll! Thanks!

  10. First of all, she’s such a beautiful little girl!

    How scary to have an emergency c-section like that but I don’t see how anyone could deny their child, special needs or not so I love this story and your sister saying she’s my daughter, she needs me, brought tears to my eyes. I would do anything for my kids!!

    My brother in law is 30 years old with severe cerebal palsy and he’s one of the happiest people i know. even after tons and tons of surgeries and in and out of hospitals, just a smile on his face and you heart gets full

    Great post!!

  11. She is such a beautiful little girl. Thanks for sharing such a personal experience.

  12. Such a great story – Thank You for sharing

  13. This is so sweet, thank you for sharing!

  14. tears.

    oh how i love this post. so beautiful. people with downs are the most loving & caring people God ever put on this earth. they are beautiful inside & out. my oldest sister is downs. 47 years old & going strong!

    hugs to you & your sister.
    beautiful beautiful post!
    xo
    kellie

  15. She is just BEAUTIFUL! Thanks for sharing!

  16. Thank you all for your wonderful comments!! Thanks Nest of Posies for your kind words and sharing this post!!! And Michelle, thanks for sharing your story as well.

  17. Your story is beautiful! I am a mother of a special needs son (he is 21 months) and he has fulfilled my life so much. He also has a genetic syndrome as well, 2nd most common after Downs. I think the scarest part is right after the Dx however, after that I just have to learn about every success story out there and then I decide that my son will succeed too. I think Evelyn is a beautiful little girl with a beautiful name. I wish you all mant years of happiness and health!

  18. Thank you for sharing! It definitely made me cry…in my office. :) What a beautiful family!

  19. This post made me cry. What a beautiful baby girl! May her life be filled with only joy and happiness.

  20. Evelyn is the cutest thing! I am special needs teacher. I teach preschool teacher as well. I love this post. I am going to share it. I hope you dont mind!!

  21. Little Evelyn is adorable and beautiful!

  22. What a smart cookie and blessing Evelyn is! Thanks for sharing this sweet story. <3

  23. What cute kids your sister & hubby have. They look a lot alike. =D I’ve met a few special needs kids and have enjoyed knowing them so much. There is a positive outlook and a joy of life that is so nice to be around.

    Thanks for sharing – I’m giving your post a stumble too…

    Tina ‘the book lady’

  24. Your nieces are both beautiful. My husband loves people with Down Syndrome and we never did get any testing when I was pregnant because we knew that whoever our little one turned out to be, we would love him or her with our whole hearts and with whatever situation came at us. Your sister sounds like a strong woman. I think that despite thinking I could handle it, I would have broken down emotionally in a big, big way.

  25. Such a cutie! Thanks for sharing your story. My children both have special needs and I was at peace when I found out because I knew there was something “different” about them. Days are hard sometimes but I love both my boys so much.

  26. Love this story. Your sister is so amazing. I do not have any special needs in my family but I know those who do and being around those people just makes life so much better and fun. Their always high spirited and nothing can bring them down.

  27. She is a beautiful little girl! Having a special needs child teaches you so much. My son taught me patience and perseverance.

  28. Beautiful story! You never know how life will throw you curves. Love hearing this story of strenght and love! Beautiful1

  29. What a beautiful story, and an even more beautiful little girl!!!

  30. Isn’t she just the cutest ever? I bet she is a real joy to be around.

  31. What a wonderful post, thankyou for sharing, she is gorgeous especially in her pink dress xx

  32. What a beautiful child, and what a touching story! Thank you so much for sharing :)

  33. My heart skips a beat when I am in the presence of these children of God. They have a unique calling and I feel we will all be surprised when we learn who these speical little ones really are!

  34. She’s beautiful! Down Syndrome children are the most lovable and affectionate children one will encounter. Your sister was very fortunate to have you at her side. I have a son who has severe disabilities – a result from hemorrhaging in the brain when the docs were trying to remove a tumor caused by his dad’s genes and mine not being compatible. “Welcome to Holland” has been read many times over by me – often times getting me through the rough times when I felt all alone.

  35. What an amazing inspirational post! Thanks for sharing.

    Jackie
    http://www.savingadime.com

  36. She is really a beautiful doll baby! Thank you for sharing this touching story with us!

    Cathy
    sidetrackedmom.net

  37. Thank you! visiting from the hop.

  38. Beautiful, Thank you for sharing.

  39. What a great post! She is a beautiful little angel!

  40. This is a really fantastic post. Evelyn is adorable!

    As a kid, my best friend was deaf. I never even considered that she was different. I just knew that if you wanted to talk to her, you had to sign and make sure she was looking at you.

  41. beautiful post.

  42. Thanks everyone for all the lovely comments!

  43. She is a beautiful child! :) My 11 year old daughter has Epilepsy. It has not been easy for her or for my husband and I..it is very, very difficult watching her suffer with seizures, but I know that God wanted us to have her.. because he knew that we have the strength and unconditional love in our hearts that she needs.

  44. Thank you for sharing this. What a beautiful girl she is. And it sounds like she came to such a wonderful and caring family and extended family. I love the name Evelyn–we chose it, too.

  45. I was surprised to read this. It is beautifully written and from someone with a hugh heart. There’s not a lot written on the subject the way you wrote it.

    I am in your giveaway group on FB and this is me. I have a son (my 3rd child) who was born with Down’s. He had 3 holes in his heart and needed open heart surgery at the age of 11 months. He had the best surgeon in the U.S. and he pulled through.

    He started school at the age of 1 Year old, riding the bus to get there. Now how do you express your heart being ripped out when your 1 year old is taken away for the day.

    I was only 25 when I had him with no signs of problems. They told me and it went in one ear and out the other, because he was my child just like the other 2. So he needed me more. I was even advised to give him up and praised when I kept him! Can you believe that… Praised for keeping my own child!!

    Well my son is now 25 years old with a birthday April 14th Lord Willing.. He is precious to me and I couldn’t live without him. God has been with us from the moment he took his first breath.
    Oh and yes I has to have an emergency C-Section as well. He did better than I… ;0)

  46. What a great post, Kristin – thanks for sharing your story. I absolutely LOVE when people share such positive stories about children with special needs. They TRULY are a joy and positive thoughts and stories about them are not as prominent as they should be.

    Your niece is BEAUTIFUL and I can really feel the love that you and your family have for her! <3

  47. I already commented by it is a beautiful post!

  48. After wiping away my tears, I have to tell you how beautiful this post is. In June my husband and I found out that our daughter is an achondroplastic dwarf. As a women at 5’8, I will never know what she will go through, but she will be a mighty girl and we are so blessed to have such a beautiful little girl.
    A child with special needs brings out a strength in not only parents, but in the friends and family of the child, as well.
    You niece is beautiful!

  49. I am reminded of the Holland or Italy story/poem! What a treasure!

  50. I am glad that your sister, niece and the rest of the family are doing so well. My sister also had a child with Down Syndrome and she wasn’t so fortunate. I didn’t say that to put turn the post sad, just to show that you should appreciate what you have – as you obviously do. I wish you and your family all the best. :)

    Dawn
    http://www.cheapisthenewclassy.com

  51. I love how you said she ‘just happens to have down syndrome’. I really don’t like when people define each other with things like that. She’s a wonderful, beautiful person who just happens to have down syndrome. I loved the Holland story. It’s such a great illustration of what it’s like to have something go permanently different than what one was expecting.

  52. She is such a cutie! My first cousin is autistic, like severely autistic. He is in his mid 30′s now and pretty much has to stay medicated to control him. Evelyn is very lucky to have a proactive mother that is getting her the resources to strive early on. I wish my cousin would have had the same chance but there just were not as many resources back then.

  53. What a beautiful family!!! I see a lot of strength and love in those photos.

  54. Such a beautiful little girl and family! :)

  55. What a great story. There is a kid that works at the Chick fil a my son and I go to that has Downs Syndrome. I would really love to bring him home with me, he is so sweet and attentive to my son. We have been going there for years and he is always there. My husband knows if he ever needs a roof over his head, he is coming home with me.

  56. What a wonderful story, and thank you for sharing it with me. Your nice sounds like she has a lot of love all around her and she is a beautiful little lady. :-)

  57. One of Gods little miracles was sent to your sister for a reason. She is so beautiful! Very smart and will accompilsh many things in her life. My hats off to your family as Evelyn will surpise them everyday by being special !…. :)

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