R: Do you have Joy raising your DS child?

[Guest guest]

Dear Carin,

This is a tough question. I don’t think we all have the same experience and

in fact I marvel at the occasional mother that seems to take the diagnosis

of Down syndrome in stride from Day One loving their baby at first sight.

This was not my experience. I did not have joy in the beginning. I cried

uncontrollably the first week in hospital and our son didn’t have any

particular health issues. I think my problem was that I was only seeing the

Down syndrome; I wasn’t really seeing my son, the baby, the little person

emerging. Then probably without even realizing what was happening, those

little hands, that little smile started to capture my heart. The joy is

there; when you let the love for your child happen, the joy flows in to your

life.

I often think that the bond with my son with DS is something stronger than

the ordinary. He is the best thing that ever happened to me and I sometimes

feel sorry for parents who are only living the ordinary experience. He

makes me laugh every day, then he makes me totally frustrated because he can

be incredibly stubborn! Sometimes he even makes me lose my temper and when

I scold him he almost invariably comes and puts his arms around me and says

“Scusa mamma, ti voglio bene!” (translate: ‘Sorry mom, I love you!’)

(Compare that to my daughter who holds a grudge for days when I tell her

off.) How can I resist?!

If you haven’t already heard from Sue Mayer, her blog is well worth reading

<http://www.suemayer-specialneedsmom.blogspot.com/>

www.suemayer-specialneedsmom.blogspot.com .

I wish you all the best. Keep writing; there is always someone here willing

to listen and share their experience.

Eunice (in Italy)

Mamma to Zacky 12 y/o with DS; 14

Da: [mailto: ] Per conto

di gratitudehomeschool

Inviato: mercoledì 11 gennaio 2012 19:09

A:

Oggetto: Do you have Joy raising your DS child?

Do you have Joy raising your DS child? Have you had it from the beginning?

Did it take awhile to come; if so how long? If you don't have it, do you

feel guilty for not having it (I do)?

I have had so much JOY raising my first three children.

I have had little, to no Joy, raising my youngest with DS. The start of life

with heart surgeries, and knowing that her heart still isn't right, etc.

hasn't helped. There has been a lot of sorrow surrounding her. She is

monitored, every 6 months, for the moment when congestive heart failure

returns. It isn't just the surgeries though. There are many very difficult

parts of life that I am able to deal with on an emotional level;

disabilities isn't one of them. It has always been my greatest challenge

emotionally.

So if you have joy, would you care to share when it came about and how you

found it with the challenges of DS.

God Bless.

In Christ,

Carin

[Guest guest]

I agree with Eunice. I sort of feel sorry for folks who don't get to have the

amazing experience of having a kid like mine.

My daughter came so close to death, we will never get over the near-miss. If I

am not 100% joy filled with all the work of having a kid with ds, I am

definitely 150,000% joy filled she lived. I fully believe one of the reasons I

did not grieve having a kid with ds is because mine was so sick, I was begging

God from day one to let her live so I could learn how to rear a kid with ds. My

focus was solely on that. has been in 8 hospitals, and had a feeding tube

for 8 years. She did not walk until age 4, and still has a wider stance/gait

than the average kid w or wo ds. She, thankfully, doesn't care, and neither do

we. She was not potty trained until age 7. But I still remember, and will for

the rest of my life, the morning when she was around 18 months old and my

husband got up to get her from her crib (which was in our bedroom), and I heard

him say to her in a tone that is indescribable " I've waited a long time to see

that. " I walked over and she was smiling from ear to ear. We wait so long for

those moments to happen that when they do they are just so much more precious.

I can also say I was filled with glee when I got a note sent home from school

when was in 5th grade. She was mad about something and had slammed her

book on another student's desk to adequately express her outrage. The teacher

had scolded her (rightfully so). stuck out her hand, turned her head away

from the teacher and said, " Talk to the hand! " OMGOSH! I couldn't be mad - I was

laughing too hard.

On Jan 12, 2012, at 5:05 AM, Zuliani wrote:

> Dear Carin,

>

> This is a tough question. I don’t think we all have the same experience and

> in fact I marvel at the occasional mother that seems to take the diagnosis

> of Down syndrome in stride from Day One loving their baby at first sight.

> This was not my experience. I did not have joy in the beginning. I cried

> uncontrollably the first week in hospital and our son didn’t have any

> particular health issues. I think my problem was that I was only seeing the

> Down syndrome; I wasn’t really seeing my son, the baby, the little person

> emerging. Then probably without even realizing what was happening, those

> little hands, that little smile started to capture my heart. The joy is

> there; when you let the love for your child happen, the joy flows in to your

> life.

>

> I often think that the bond with my son with DS is something stronger than

> the ordinary. He is the best thing that ever happened to me and I sometimes

> feel sorry for parents who are only living the ordinary experience. He

> makes me laugh every day, then he makes me totally frustrated because he can

> be incredibly stubborn! Sometimes he even makes me lose my temper and when

> I scold him he almost invariably comes and puts his arms around me and says

> “Scusa mamma, ti voglio bene!” (translate: ‘Sorry mom, I love you!’)

> (Compare that to my daughter who holds a grudge for days when I tell her

> off.) How can I resist?!

>

> If you haven’t already heard from Sue Mayer, her blog is well worth reading

> <http://www.suemayer-specialneedsmom.blogspot.com/>

> www.suemayer-specialneedsmom.blogspot.com .

>

> I wish you all the best. Keep writing; there is always someone here willing

> to listen and share their experience.

>

> Eunice (in Italy)

>

> Mamma to Zacky 12 y/o with DS; 14

>

> Da: [mailto: ] Per conto

> di gratitudehomeschool

> Inviato: mercoledì 11 gennaio 2012 19:09

> A:

> Oggetto: Do you have Joy raising your DS child?

>

> Do you have Joy raising your DS child? Have you had it from the beginning?

> Did it take awhile to come; if so how long? If you don't have it, do you

> feel guilty for not having it (I do)?

>

> I have had so much JOY raising my first three children.

> I have had little, to no Joy, raising my youngest with DS. The start of life

> with heart surgeries, and knowing that her heart still isn't right, etc.

> hasn't helped. There has been a lot of sorrow surrounding her. She is

> monitored, every 6 months, for the moment when congestive heart failure

> returns. It isn't just the surgeries though. There are many very difficult

> parts of life that I am able to deal with on an emotional level;

> disabilities isn't one of them. It has always been my greatest challenge

> emotionally.

>

> So if you have joy, would you care to share when it came about and how you

> found it with the challenges of DS.

>

> God Bless.

>

> In Christ,

> Carin

>

>