grandparent problem

[brocksmommy]

this has been a very difficult time for me and my husband. but happy to say that we are stepping up to the plate.

i do have to get this off my chest. the responses that we have gotten when telling people that are son has DS have been so mixed. my Friend that I've only known for a year was happy that i had my son and was very supportive in the news of him having DS. my foster mom(the best woman that i know) took such delight in him. it filled me with joy that my mom love him unconditionally. my (unofficial)dad acted like he died. he is not sure how to approach me on that subject but he love to hear the progress that Brock has made. all of my husbands friends reacted as though Brock died. but the one that hurts the most is the responses that my husbands mother(Jeanne) has.
when i had my little girl(Vanny) she was the first grandkid and the second girl in (i think) 4-5 generations. Jeanne was so excited about Vanny nobody was able to buy anything for Vanny because Jeanne got it all. and i mean all, like a years worth of clothes. she always wanted to hold her. she even yelled at me the night that i got out of the hospital because i did not run right over to let her grope my daughter. even though she was there threw part of the delivery and everyday that i was in the hospital.
now with my son, she was here 1 week, held him twice. Bought him 3 outfits she has since sent Vanny several outfits.
it not the outfits. It's what she is trying to show when she does. I'd much rather she spent time with them.
the other thing that she did completely enraged me was, she sent me this article that insinuated that this vitamin formula could cure my son. grrrrrrrrrrrrrrrr
i wish she would accept and love my son. he is so beautiful and sweet .
my feeling on this is if any one can't love both my kids they don't need to around.

does any one have some suggestions ? has anyone been threw this?

[ALLISA]

Hi Brocksmommy !

I know it must be very frustrating and sad for you to see the difference in treatment between your 2 children. Hopefully your MIL is just unsure and needs time to adjust to the news. We all have to go through our own acceptance process....and hopefully she'll get there sooner than later. I cut and pasted this article that I thought was 100 % approariate.......

Thanks to Radonna who posted this ealier in the month....I told you I loved it and saved it as a favorite !! I knew it would come in handy......




Granddaughter's a rare gem
by Beverly Beckham
Wednesday. July 2. 2003

I will have to apologize to her someday. I will have to tell my grandchild that I cried the day she was born.

Not immediately. Not when I first held her and she looked into my eyes and I looked into hers. There's a picture of this. Lucy, just minutes old, almost saying hello. I never shed a tear in her first 12 hours of her life when I thought she was USDA-approved top-of-the-line perfect Grade A baby girl. Then I was all smiles. I called my friends and said the baby has come. Lucy is here. Lucy is perfect - round cheeks, red lips, downy skin, blond hair, blue eyes.

We joked with her father, "Where are those Sicilian genes?" We hugged one another. We were so lucky. We got our miracle, we exclaimed. And there was no doubt that we had.

And then a doctor walked over to the bed where Lucy lay and he unwrapped her and inspected her. And he said the word test. And then he said Down syndrome.

We cried then. All of us. Instantly. Because what had been perfection just seconds before, what had been all joy and gladness and light, became, with two little words, imperfection and fear.

Stupid, stupid us.

How will I tell Lucy that we wept while holding her? How will I explain that in those first few hours we looked at the gift God created just for us and wanted him to make it a better gift. To fix it. To make our little Lucy just like everyone else. There's been some mistake, God. This isn't what we prayed for.

But isn't it?

Give us a baby to love, we begged and we have her and what sweeter, better, bonnier baby could there be?

People told us that it's only natural to grieve the loss of a dream. And that's what I like to think we did. We dreamed one Lucy, the perfect little girl - like Margaret walking with her mother, like Shiloh on the stage in her toe shoes.-- -

In those first few hours it was this dream that tormented us. And it blinded us, too, because all we could see was what Lucy wouldn't be. Here she was, infinity in our arms, fresh from heaven, in such a hurry to get to us that she arrived two weeks early. And we were judging her.

She left the angels to come here. She gave up paradise for us. And we cried.

Funny thing is she hardly cried. She opened her eyes and took us in, one at a time, and amazingly she didn't seem disappointed at all.

One in 800 babies is born with Down syndrome. The rarer the jewel, the more value it has. That's the way it works with things - with pearls and Lottery tickets and horses and art.

But in our world and in our culture, we like our people to be all the same.

How will I tell her that I wanted her to be just like everyone else? That I was afraid of different when it's what's different that stands out? Are the black sand beaches in Hawaii sad because they're not soft and white? Do four-leaf clovers ache to be three? Does the life that grows above the tundra wish it were rooted in a valley instead?

The red rocks of Utah. Icebergs. The Lone Cyprus. The Grand Canyon. And Lucy Rose.

We expected our life with Lucy to be lived on paved highways with well-marked signs, the rest stops never far from one another.

Lucy is taking us down a different road, a blue highway, instead. It's scary not knowing what's ahead. But no one, even on the wide smooth roads, knows the future.

We yearn for paradise. Lucy just came from there. She is heaven in our arms. We didn't see this with tears in our eyes. But we see it now.

Give your MIL some time.....she sounds like a wonderul grandma to your daughter and just needs to adjust to the news.......

My other personal favorite that I have posted here a ZILLION times is......Welcome to Holland

Welcome To Holland




by
Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved.




I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



SORRY SORRY for the ridicously long post !!

I hope things look up for your family in the future and Welcome to UnoMas!!

Allisa, Mom to Connor (12) Ty (8) and Erin (6 with DS)

[Emilysmom]

Thanks Allisa..........both of those are SO appropriate!

Brocksmommy,
I am really sorry that your MIL is reacting the way you have described. I know how very painful it can be, because my own mother did very much the same when my daughter was born. I think this really happens more than we ever hear about...........even though some grandparents are very loving and supportive, I think many struggle and truly don't know how to respond. I'm guessing your MIL is grieving the loss of the grandson she had been expecting, and hopefully she just needs time to work through that. It takes some people longer than others. I think the fact that she sent you the article about vitamin therapy might mean that she wants to try to "help" in some way. Of course, there is no cure from vitamin therapy or anything else.....but how many of us have reached out there for something we thought might help our children? I know I have. It doesn't mean that I don't accept her and love her with all my heart.........but I have done lots of stuff over the years that I thought might help her. Please just give your MIL a bit more time, help her to see that you and your husband love and accept this baby, and hopefully she'll adjust.
Susan

[brocksmommy]

thank you allisa. yes i've read welcome to holland. it made me cry. i was thinking of send that to my MIL. i want to give her time. i know if she just tried, she would fall in love with him. i hope she does! but it still hurt to have my son rejected for some thing that we have no control over. now i'm not say that i have not had my share of trouble with this (DS) but he is a gift from god and a true blessing. the minute that he came out i made the doc let me touch him before they rushed him off.
being 4 wks early and possibily having DS i didn't know if i would see him again. but God has blessed me

[wrblack]

My mom was great when Charlie was born and was really super when we got the Ds dx 3 days later. Told me everything would be all right, he'd just be our special little boy, and we'd all love him all the more.
But, as long as people are posting articles, how about equal time for a grandfather, and this grandfather a MD and professor?

www.benotafraid.net/article.asp?id=36

<< Seth is a Perfect Child
Frank H. Boehm, MD
Boehm is Professor of Obstetrics and Gynecology at Vanderbilt University Medical Center, where he is former Chairman of the Ethics Committe as well as former Director of Maternal/Fetal Medicne. He is author of "Doctors Cry, Too: Essays from the Heart of a Physican." Contact Dr. Boehm at [e-mail]



[Presented here with persmission of Dr. Boehm, originally appeared in the Nashville Tennessean column, Healing Words, September 14, 2004.]


Over the past 38 years, I have participated in the care of thousands of pregnant women and have attempted to answer the many questions that each patient invariably wants answered.

While these questions are often specific to each patient's pregnancy, one common question usually surfaces at some point in our discussion, "Is my baby OK?" Because it is so difficult for me to define "OK," this question has always been a tough one for me to answer.

At the heart of this question lies a pregnant patient's desire to know if her unborn child will be perfect (normal and healthy), a very reasonable concern. Once again, however, defining perfect is not an easy task.

Most pregnant women do not realize that approximately 2% of the 4 million births each year in this country involve the delivery of a child with a significant congenital defect. That translates to one out of 50 births! These birth defects include hundreds of different types of anomalies such as spina bifida, heart abnormalities, limb deformities, metabolic disorders and chromosomal abnormalities such as Down syndrome.

When you consider that each of us begins with the union of sperm and egg, which creates one cell and this one cell continuously divides to create the billions of cells that result in a living child, it is truly a miracle that any of us are born, much less that we are born perfect.

It is with this in mind that I explain to patients that each birth is a miracle and that the uniqueness of each of us is what makes us perfect. I also attempt to explain that normal is in the eye of the beholder. The gift of life can be "perfect" even in the presence of serious problems. One year ago, my newly born grandson, Seth, was to help me understand this from a different perspective. Seth was born with Down syndrome.

Down syndrome was first described by Dr. John Langdon Down in 1866 as a condition in which a child is short in stature with mild to moderate mental retardation, as well as often being associated with other physical problems such as heart defects. The risk of having a child with Down syndrome increases as women age. At 20 years of age, the risk is one in 2,000 births and at 35 it is one in 365. At age 40, the risk of delivering a child with Down syndrome is one in 100.

I have spent my entire career counseling patients on the risk of delivering a child with Down syndrome. But until the birth of Seth, I had never been confronted on a personal level.

My son Tommy and his wife Lisa were expecting twins - a girl and a boy. I vividly remember the excitement as Julie and I waited during the delivery and cried with joy as we each held a child in our arms in the recovery room. Marly and Seth were perfect. What dreams and expectations we held for these two precious bundles of joy!

Several hours later, however, we were confronted with the fact that Seth carried a diagnosis of Down syndrome while his sister Marly did not. Our family was filled with emotions, from the high that came with the birth of the twins to a low at learning of Seth's disability and knowing that he would be different with possible life-long problems.

Later that evening, holding Seth in my arms and gazing into his angelic face, I was overcome with unconditional love for my grandson. As the tears rolled down my cheek, I understood that despite his diagnosis, to me and those who love him, Seth is a perfect child, to be loved and nurtured, the same as his sister Marly. Our dreams and expectations for him may now be different from those for his sister, yet they are dreams and expectations nonetheless.

To me, Seth is perfect. His 1-year-old smile lights up a room and his laughter brings warmth to all who are near. He loves to cuddle and gaze into the eyes of those who hold him and he embraces his sister with what can only be described as pure affection and love.

Seth is one of many children who are born with birth defects and complications, yet, like so many others, Seth has embarked on a journey we call life. That life will be filled with challenges for him and his family, yet that is also true of each of us as we embrace life with its ups and downs.

As we enter a world in which more genetic information will be available for us to consider in selecting a perfect child, I hope we have room in our world and hearts for those like Seth who are challenged and different, because challenged and different can still be perfect. >>

[CC]

I can relate and yes we have been there with my hubby's Mom. We tried hard for the first four years of Christopher's life to try and then for us it was time to move on so called and my kids have not seen their Grandma on that side for almost 9 years I think it is now and she only lives in the next town. But for us we are all better off

You said "i want to give her time. i know if she just tried, she would fall in love with him. i hope she does! but it still hurt to have my son rejected for some thing that we have no control over." YUP it does hurt, no disagreeing with that, HUGS going out to you guys.

But with all that said, I pray that your situation turns out much different then ours. Maybe just some time and learning bout DS will bring her around.

CC

[momofrussell]

AWW I know this can be such a rough time. I think the older generation has maybe some "fear" we don't see or understand sometimes. Now, the grandparents for us were ok.. my mom and my inlaws.. and my grandma was ok with it all.. but I read plenty on just how the older generation can be "old school", "misinformed", ect.. and I think they just don't KNOW what DS is all about.

I think time will help.. I truly do... she probably doesn't know how to approach your son maybe? I think even some new parents are like that... almost like a "will he break?" kinda thing...if that makes sense? I think to give her some good info... show her what a joy your son is and how he is STILL just a baby "oh, look at him eating, look at him cooing", ect... and give her room for questions without judgment and it might all be ok

Sounds like this is a new learning experience for all of you... and it's a process and road we travel.....

Hugs.... and glad you feel comfy enough to share with us.. that is what we are here for!!!

A.

[rickismom]

Time will probably help. My mom was ok, but my mil'S INITIAL REACTION WAS "lETS HOPE SHE DIES..."

Today she is accepting of Ricki, and can enjoy her. She gives her presents just like to all the other grandchildren

[mommygwen]

My FIL said, "The neighbors up the street (when he was growing up) had one and they kept it in the attic." Their generation was brought up to avoid people with disablities so they are unprepared. I do hope that time will allow her to enjoy her grandchild. If not it; is her loss.

Gwen

[andrewsmom]

Well, when we found out something was "wrong" in my prgnancy, my Mom was in total denial. Telling me the doctors were wrong and everything with the baby was just fine. After he was born and it was confirmed he had DS my Mom was still telling me they were wrong! Then she kept telling me he only had "a little DS". LOL!!! We keep trying to educate her. She has come a long way now saying she thinks he is "on the high end of the scale". **sigh**
I recently educated her (rather firmly) because she felt he could not be potty trained, and would not be able to come on vacation with us this summer (my sister also has a "normal" 2 year old and it was fine that she should come). She also caters to my sister's daughter, buying her lots of toys and then telling me "Andrew is just too young".

Give it time. If people want to behave this way I actually feel bad for THEM. They have no idea what they are missing out on.

Oh yeah.....I also got that same article about the vitamins from my mother...LOL!!! Education is everything.

-Trisha

[chasesmom]

Like CC, we havent seen my husbands family in years, almost 11 to be exact because they could not accept Chase even after giving them three years to try before we finally said enough.
LOL to the vitamin articles...I think they send a new batch out every ten years, my brother gave me an article on the vitamins that were going to make my "high end son with DS almost normal" and then he followed that up by telling us if we gave Chase the vitamins and got his eyes "FIXED" no one would even know there was anything "WRONG" with him. Ad my sister, God love her, said we should really have thought about sending him to be with his OWN kind, it would be the nice thing to do... and it never occurred to her she was insulting us, just trying to be helpful she said!!!!Hmmmmmm who do you think really has something wrong with them, Chase or my family?
Hugs, Robin

[Claire]

I can relate to this too. My sister in law who is known to have little pet peeves in the family ignored Adam conpletely for the first 4 years. She is now our babysitter and loves Adam. I think once they get to know the child they automatically fall in love. She even told us she has missed so much with Adam. She now sees a little boy with laughter and sometimes mischeivious, but has totally acepted him. Sometimes they need to be faced with the rality. Like one of my daughter's Birthday she showed up with lots of gifts becuse Savannah was her new pet peeve. Although she had never acknoledge Adam in the last 3 years. We bluntly told her that we had 2 children and not one. Of course she got mad and did not come over for a while. I had a stroke and needed help and she offered. That is how she got to know Adam a a child and not not to fear the unkown. Sometimes people need to get educated too.

[Kristin]

I think that people, including our relatives, don't always know how to respond. I have to remind myself that before I had Clarice I was afraid of people with disabilities. I was very uncomfortable around them. Children with learning disabilities were kept apart from us in school, therefore we had little contact. My own mother still "slips" sometimes and needs a little reminder that Clarice is not the same as the other grandchildren. As much as I would like her to be, she truly is unique, in a positive way. That takes acceptance. My mother was very unsure of how to care for Clarice at times. It took her awhile to learn that basically you care for her the same way as any other child, but there are a few more rules. There are routines that are
followed for sanity reasons. I think the vitamins may be your MIL's way of trying to help. When a child with Down Syndrome is born, it is difficult to adjust to the idea that there is no cure or way to fix things. Each of us has to adjust to a different kind of normal. When people talk about how amazing it is to see our family operate and they comment about "How do you do it?" I just remind them that how our family operates is normal. It's just a different kind of normal. My approach with each of the family members has been to invite them to spend time with Clarice, especially one on one and find out what a nice place "holland" can be. I think, given time and an open mind, your MIL will come around. The older generation has to get past the idea that children with Down Syndrome are mindless and belong in institutions, as was the usual recommendation a generation ago.