Heaven’s Very Special Child
Posted
June 9, 2008 at
9:00 am by
Allison J
After reading the column, Long Journey on a Short Bus, and after my crying subsided, I felt compelled to write…
As I’ve said before, I have a younger sister named Rebecca. At 24 years old, her chronological age does not match that of her age in maturity.
She is very silly and sweet. She has a wicked sense of humor and a definite flair for the dramatic. My family always said that if she were “normal” she’d have been the one to run off to LA or NYC and pursue acting. She loves boys, dancing around her room to oldies, giving hugs, and tickling my older sister and I.
She also has Down Syndrome. I never lead with that because it automatically causes people to give a sympathetic smile and melancholy “aww.” Rebecca isn’t “Downs.” She has Down Syndrome. And she is amazing. She is high-functioning, which I credit in part to our parent’s relentless effort to develop her potential.
She is responsible for making me the person that I am (well, the good parts). I believe my OCD stems from her (that’s right, blame it all on the kid with Down Syndrome). Really, I don’t mean it in a bad way. By saying that I am hyper-protective of her is a gross understatement. It is why I cannot leave the house without spending 20 minutes making sure that every light, plug, or possibly fire-inducing item is off so that my precious pooch doesn’t perish. It’s why I have to scour to ensure that any possible choking hazzard is out of reach of my dog. It’s why I panic every time I leave my dog unattended in the house — someone may break in a steal him. A fire could start, leaving him helpless. Something could fall and crush him. After getting married and moving out of my parent’s home I projected all of my fears regarding Rebecca onto my dog. It’s not rational, it’s just me.
Rebecca is the reason I react when I see any child being bullied. It’s why my heart bleeds for the elderly, homeless, abandoned. It’s why I am a sucker for animals — so vulnerable. She is why I berated my mother for two months straight upon learning that Rebecca would be taking a trip to Florida with her teacher, aide, and classmates. “Are you crazy! Do you know what could happen to her? Anyone could take her. They could abuse her. No way! She can’t go.” After 4 of these annual class trips, I finally mellowed.
My mother, an amazing woman who raised three daughters, went back to college to become a teacher after all of her girls were in school, and survived a brain tumor, has assisted new parents of children with Down Syndrome. It is the kind of situation that one must live in order to fully grasp. She and my father had an understandably difficult time wrapping their minds around the shock of learning that their child had DS. They didn’t know before her birth. My mother never smoked or drank. She was 32 when she conceived. It was devastating and overwhelming. My parents had initially considered giving Rebecca up for adoption, unsure that they were properly equipped to delve into unknown territory. While the uncertainty only lasted a week, it was my mother who consoled another couple after deciding to give their three month old son up for adoption.
Rebecca was meant to be a part of our family. A wonderful, gifted, extra special gal. There was no secret handbook for my parents to consult. There weren’t support groups or internet chat sites for them to join. But when Rebecca was about two years old the teachers in her special education class sent home a beautiful poem with a picture of Becca taped to it. It was written some 50 years ago by Edna Massimilla, the mother of a daughter with Down Syndrome.
HEAVEN’S VERY SPECIAL CHILD
A meeting was held quite far from Earth
It was time again for another birth.
Said the Angels to the Lord above –
“This special child will need much love.
Her progress may be very slow
Accomplishment she may not show.
And she’ll require extra care
From the folks she meets down there.
She may not run or laugh or play
Her thoughts may seem quite far away
So many times she will be labeled
‘different,’ ‘helpless’ and disabled.
So, let’s be careful where she’s sent.
We want her life to be content.
Please, Lord, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they are asked to play.
But with this child sent from above
Comes stronger faith, and richer love.
And soon they’ll know the privilege given
In caring for their gift from heaven.
Their precious charge, so meek and mild
Is heaven’s very special child.”
It holds no stedfast answers, but offers much solace.
Tags: Coping-with-Downs, Down-Syndrome, Heavens-Very-Special-Child, Special-needs-children |
17 Responses to “Heaven’s Very Special Child”
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1. momof3
June 9, 2008 @ 12:39 pm
WOW! Allison you sound like a very loving sister! I cannot imagine what your family has been through. Raising a child with DS is very difficult and takes time, patience, effort and most importantly love and understanding.
When I was pregnant with my son the doctors told me that he probably had Trisomy 18; a chromosomal defect when the child is born with an three number 18 chromosome, but they told me that it couldve been something else. (He was one of triplets and we lost the other two very early on.) I was completely devestated. I already had a child and had lost one before my son. I know this might sound odd to some but instead of praying for him to be a healthy normal child I prayed that he would have DS. I guess that when the doctors tell you something is wrong you automatically believe that there IS something and pray for something that would be easier than the inevitable death that usually comes from such chromosomal abnormalities as Trisomy 18, although there are children that live for a while with this syndrome. I thought, after seeing my best friends parents raise a child with Sotos Syndrome, that I could handle a child with DS. I knew that financially and emotionally it would be hard but I wanted my son so badly to just live that I prayed he would have some other sort of disability.
Having said all of that I went in for an amnio and found out that the tests the doctors had done before were wrong and he was a realitvily healthy baby (we almost lost him 5 times and he does have health problems but nothing this severe!). I couldnt have been happier to learn this but there is still a small part of me that was “ready” to take on the responsibility. I have 3 children and want more but since my body doesnt do well being pregnant Im not sure if I’ll ever have anymore biological children of my own. My husband and I have talked about adoption before and it is something that we hope to do in the future. We have talked about adopting a child from my husbands home country of Mexico but the more and more I think about it there are so many children with disabilities here in the US that need good homes. I would love to adopt a child with DS and give them the home, love and family that they so need and deserve. Maybe someday I’ll be blessed enough to adopt one. I truely believe that people with DS are angels sent from heaven to do God’s work somehow. They are so beautiful and loving!
I dont know if my story will make any difference to you or not but I wanted to share it with you. Your sister sounds truely blessed to have such a wonderful family that was not willing to give up on her or her potential. I hope she realizes how blessed she is. Kuddos to you and yours Allison! God bless!
2. Allison J
June 9, 2008 @ 12:51 pm
Momof3, you sound like a wonderful, loving woman, and any child would be lucky to have you in their life.
People with DS truly are special — extra special.
My 8 year old cousin Shawn, a funny, loving, bright little guy has always had a soft spot for Becky. One day a group came into his school to talk about people with DS. They talked about the human body and make up in terms of a puzzle, and the extra 21st chromosome that causes DS.
Shawn came home and told his mother that he now understood about Becky. He said that kids with DS were extra special because they had been given an extra piece of the puzzle. How cute it that!
3. momof3
June 9, 2008 @ 1:06 pm
Allison, that is so cute! What a great way to explain it to kids! Ever since my oldest was very young whenever she would see someone that was different from her (whether it be b/c they had a mental disability, were in a wheel chair or something else) she would ask why. I never really knew how to answer this to a child but just told her that, ‘God makes certain people different and special. We dont know why He does it but they are His special workers here and we should love them and treat them like we would any other person.’. She understands a little better now that she is getting older, especially when she is around my friends little sister that has Sotos, and is now teaching her little brother about it. She always says to him, ‘…dont stare, thats not polite! He/she is just like you only God made them a little extra special than He did us. He/she is God’s helper! Be nice and smile…but dont stare!’ when she says this I know that she is understanding and respectful of the things that we dont completely understand or know. I love the way her little mind works sometimes!
Thank you for your very kind compliment! I truely hope that one day I will be blessed to have a child with DS or even something else to share my life, home, family and love with. After all we’re all here to make a difference somehow…maybe that will be one of my reasons for existance!
4. Grandma frm Ks.
June 9, 2008 @ 1:20 pm
Oh my Lord, you girls I’m still crying, The story of the bus, after I had read that I went on the blog and suggested that all read it, It was amazingly heart touching, when I see/read things like this, I stop and Thank God for my children and grand children, I think some times we forget to stop and smell the roses, see the beauty in trials and test. I do believe God knows who can emotionally take care of these beautiful Angels, Allison J I truly believe he knew what kind of hearts your parents had before placing that beautiful child with them, and Momof3, you are a very beautiful person it saddens me that you have had such a hard time with having babies,and I honestly hope that if you really want to adopt kater on that God will fulfill that dream for you, and no doudt he will, You two women are amazing and I know your story will touch and bless many hearts. God Bless.
5. Allison J
June 9, 2008 @ 4:19 pm
[quote comment="169191"]I do believe God knows who can emotionally take care of these beautiful Angels[/quote]
I like to believe that too — whether it be the biological or adoptive parents.
A lot of people are shocked when I say I couldn’t do it. My husband and I have talked about the possibilities at length. I just couldn’t handle worrying about my own child with DS the way I worry about Rebecca. I firmly believe that it would consume me in a very unhealthy way.
I’m thankful for people like Momof3 — they are there to pick up the puzzle pieces that others cannot.
6. ninja weiner nah nah
June 9, 2008 @ 5:12 pm
TEARS…Ditto for me on everything that was said above! God truly blessed you the day your sister was born…more tears!
7. Grandma frm Ks.
June 9, 2008 @ 5:21 pm
AllisonJ it’s exactly what I say about Drs.,I do not know how you could cut some one open and put your hands in their body, but Thank God we have wonderful ppl who spend countless hours making sure they know what they are doing, letting thier hand be guided by the (unseen hand).I to am thankful for parents and ppl wanting to take care of the handicapped, not sure I could, but hope and pray I would be able to, can you even imagine your sister being in a home? that would scare me to death, there are so many of our elders and mentally handicapped being mistreated in those places, the very ones that are so dependent on others, being taken advantage of, Yes God Bless Momof3 for her heart, She is one of a very few.
8. momof3
June 9, 2008 @ 7:14 pm
Allison & Grams, thank you for your kind words! Theyre much appreciated! :)Youre so kind! God bless you both!
9. Jeanette
June 10, 2008 @ 12:51 am
Allison,
What a wonderful story. Thank you for sharing. I am a mother of two boys and last year my daughter was born with DS. She is the sweetest baby. We are about to celebrate her first birthday next month and are so very blessed to have her. In only one short year our lives changed and were open to a whole new world that we never really knew. I work with new parents who just received the diagnosis and this poem is wonderful. Thank you for sharing. We are just beginning this journey of Sydney’s life, but we are looking forward to the wonders and joys to come. Blessings from a very blessed mom.
10. Grandma frm Ks.
June 10, 2008 @ 4:02 pm
Allison J, I know right now that having a child with a handicap (which I haven’t) you really think you could’nt, but all I can say, is when that baby is placed in your arms your whole being, thinking, dreams and your very soul changes, when you touch that little hand, run your finger under that tiny little chin, your heart forever is lost/given to that child, as with your parents you would have only one thought, my baby, no matter what happens from then on, yes you are consumed by that precious little being. But on the other hand, if you choose never to go that route, then all I can say is God has bigger plans for you. Maybe giving the love and compassion that you have to those less fortunate than your sister to have good loving parents, It is so sad how many there are that are abused, Anyway, my thoughts and prayers are certainly with you and momof3. Also Jeanette, You are one that God knew that was the right momma for that little Angel, Blessings to you all,
11. momof3
June 10, 2008 @ 9:04 pm
Great post Grams!
Jeanette, God bless you and your little sweety!
12. Allison J
June 10, 2008 @ 9:53 pm
[quote comment="169359"]Allison,
What a wonderful story. Thank you for sharing. I am a mother of two boys and last year my daughter was born with DS. She is the sweetest baby. We are about to celebrate her first birthday next month and are so very blessed to have her. In only one short year our lives changed and were open to a whole new world that we never really knew. I work with new parents who just received the diagnosis and this poem is wonderful. Thank you for sharing. We are just beginning this journey of Sydney’s life, but we are looking forward to the wonders and joys to come. Blessings from a very blessed mom.[/quote]
I know every child is different, but I swear there is something innately sweet and kind inside those with DS. I can’t describe it, but when they smile you can tell that they REALLY mean it. I hope your little Sydney has a wonderful birthday, full of many smiles!
13. Grandma frm Ks.
June 10, 2008 @ 10:11 pm
Hey Ladies, there are 2 movies I dearly love, have seen them over and over, one is Audrey’s Rain with Jean Smart, the other a tear jerker, Follow The Stars, Young mother with handicapped daughter, husband leaves them, this mother is awesome, Another young girl (11) is a mothers helper and she can communicate with the little girl, anyway has a great ending to a love story in various ways, So everytime I watch it, I will remember you girls, You know Momof3 has been bloging with me for a while, and I know this is cyber space, and some of the blogs is so fiesty, I guess thats a word, but these real heart touching stories just make me wish, I could put my arms around you all and just love on you, These stories are about real ppl(not that J&K are not) but this just tugs at the heart even when I’m not on here, and you know that lil’ still voice way down inside? well it says say a prayer for them, and I do, As Ephesians would say “This is the day the Lord has made, I shall rejoice and be glad in it”
14. Jeanette
June 11, 2008 @ 8:32 am
You all are such sweet people. I am glad that I stumbled across this blog. I will have to check out those movies on Netflix. Thanks for the tips. I have to say that we feel very lucky that Sydney was born today. The advanced in understanding DS have come a long way. Allison, your sister was lucky to have such a loving family and I am so glad that you have seen the beauty in her. There are many families that struggle with this diagnosis. Believe me, it was no picnic when we got the news. Lucky for us, we have a strong faith, family and support system. Feel free to check out our family at http://www.DownRightFaith.com/weblog. Blessings to you all!
15. Jessica
June 11, 2008 @ 2:14 pm
With endless news of devastation and despair in the world, it’s so heartwarming to hear of your special bond with your sister. She sounds like an amazing person. Thank you for sharing your story.
16. Sarah R
June 12, 2008 @ 8:29 pm
Allison J., I beleive God gives special children to special parents because God knows they have the patience to care for them. You are a great sister!! I also enjoyed your poem, thank you for your story, I was deeply touched. Go Bless you and your family!!!
17. Sarah R
June 12, 2008 @ 8:31 pm
Oops, I do wish they had spell check…God bless, is what I meant say!!