I need some words of support....(m)

iVillage Member
Registered: 03-26-2003
I need some words of support....(m)
22
Wed, 09-10-2003 - 9:50pm
I know not too many of you know me, but the support that I've gotten so far from this group has been unmeasureable, so I thought I'd ask you guys for a "few" shoulders to cry on.

First of all, tomorrow is DH and my 10 year anniversary. It's been so hard since Sept 11th to truly enjoy our "special day." I feel so guilty for wanting to celebrate when there are so many people that are grieving. The day just seems so somber.....I just don't feel right.

Second, I decided to "lurk" over on a "thirty-something and pregnant" board. I knew I shouldn't, especially in the mood I'm in, but I did anyways. It was full of nothing but "Should I have an amnio or not?" and "I'm scared to get my AFP results." I KNOW I shouldn't be taking comments personally or to heart, but it's hard when all the worrying is focused around having a child like the one you do. My heart just sinks when I read comments about how AFP's came back w/ an elevated chance for Down and people are upset and worried about what they are going to do. I have to remind myself how I initially reacted and that it is completely NORMAL to feel uncertain and upset. In fact, I don't know ANY mother that found out that their child had Down and said YIPPEE!! It's just that I can't help but feel so angry and want to post back "What the hell is so bad about having a child w/ Down?" I know I'm just on the defense......I can't help it. People are talking negative about a condition that my child has, a part of him that I find so special, a part of him taht makes me love him even more. It's just so hard to see the emotional turmoil that the diagnosis puts on people when it can be such a wonderful thing. It especially hurts when there are people that are contemplating terminating because of Down (no debates PLEASE). Daniel's life is just as valuable as any other child's....regardless of how many chromosomes he has.

I wish I could show people what it's like to live just one day in my shoes. What it's like to wake up to such a sweet, angelic face. To smell his sweet baby breath as he's quietly sleeping. To just melt when he throws his short stubby little arms around your neck gives you a hug after you read him his favorite Dora the Explorer book. To hear him laugh-out-loud when he gives you raspberries after eating a big spoonful of Rice Krispies. To sing "Itsy Bitsy Spider" for literally the 100th time because you don't have the heart to say "no more." To love someone so much that you'd give up your life in a split second for theirs. That's just a glimpse of what it's like to be in my shoes. The funny thing is that most people reading my post would have no idea I was talking about a child that had Down. Why?? Because he's NO DIFFERENT then any other child and I'm no different then any other mother who loves her child unconditionally.

Can I share something special with you? It's a poem that someone gave me after Daniel was born. I read it often especially when I need to lift my spirits. I hope you enjoy it as much as I do.

Heather




Welcome to Holland by Emily Perl Kingsley

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




heatherfamilysig.jpg

Pages

iVillage Member
Registered: 03-27-2003
Wed, 09-10-2003 - 10:02pm
Heather,

First of all I want to say that, that poem was beautiful. I don't have a child with Down, but agree with you totally. I refused my amnio when I was pg, because I would not have terminated regardless of what the results said. A baby is a baby. I can't tell you that I 'know how you feel' and I can't really offer any words of encouragement, except to just let you know that I agree with you, and that Daniel is so lucky to have a mommy like you!

Rebekah

Avatar for annemd03
iVillage Member
Registered: 05-09-2003
Wed, 09-10-2003 - 10:32pm
Heather,

God has blessed you with a VERY special little boy. YOU are very special in that God deemed YOU to be the wonderful, loving mommy that Daniel needed. And while he is such a wonderful blessing, it has been a HUGE learning experience for you. You've had to stretch in ways you never dreamed possible...You've dealt with deep feelings of loss and fear, and yet tremendous joy at the same time. Most people will never totally be able to appreciate what you have experienced and continue to experience.

I know it is difficult to hear people speak of Down syndrome fears...especially plans to terminate because of Down. They come from a place of fear and ignorance. Yet, I know that does not make it easier for you. I pray that God will soothe your pain over such hurtful comments...

As for your anniversay, you celebrate with your husband! It is the anniversary of another special blessing God has given you...your soul mate. I know it is a somber day, with many bad memories...but it is also a time to give thanks for the fact that you and your family remain intact and strong. It may seem selfish, but it is not. Everyone has feelings of sorrow for what happened 2 years ago...and we remember those who were killed and families who suffered a loss. But we also are reminded that our time here is precious, and we should be thankful for each day. So...HAPPY ANNIVERSARY!

Take care of yourself, Heather!

Anne

Anne - Proud Mommy to Rachel Elizabeth!

iVillage Member
Registered: 07-10-2003
Thu, 09-11-2003 - 12:05am
You celebrate with your DH. Yes it was a very very very very... sad day. It is a day of rememberance not being depressed. You remember the lives and what they did. Memorials are for remembering the happy times, funny times, crazy times, sad times.... we had with a person. We have all lost special people in our lives. You better go out to dinner and dancing for your anniversary. Sip some wine (non alcholic if you are PG) and kiss your DH like you were dating. Hold hands and play footies under the table. This is your special day that deserves celebrating. Life goes on. We will never forget what happened on Sept 11th but I am sure the people that died would NOT want us to put our lives on hold and miss out on celebrating special times.

You are a very special mom and your son is very lucky to have you. I am still crying over your sweet words. I am 35 and TTC #3. I have 2 boys (9 & 3). I will be faced with the Amino and will ask 1000 questions. Not sure why to have it. OB will help me make an educated decision. I would like to know sex for sure. If and when I am PG.

HAPPY ANNIVERSARY

Love

Melissa

TTC #3 CD # 1

iVillage Member
Registered: 05-03-2003
Thu, 09-11-2003 - 8:30am
Good Morning Heather,

I agree totally with what every one else has posted, especially Anne. I can kinda understand the feelings of some of those posts you spoke of on the other board, but I truly believe they were made out of fear, and with me being 36, 37 next month, I have the same fears, because I know that it is a definite possibilty for me due to my age. I have never been around any children with Down's, and I think most women of course think that when they do get pg, that their pregnancy will go smoothly, the delivery will go off without a hitch, and they will be able to raise their children with no problem. But, that doesn't always happen. DH & I have discussed this at great length, and we understand the risk involved, not just for Down's, but many things concerning "advanced maternal age" as the medical profession likes to refer to us. And we decided to dedicate ourselves regardless to our child if the Lord blesses us with one.

I've seen your pics of Daniel and he is a precious gift and you're a wonderful Mom and God knew what he was doing when He put you together. Count your blessings everyday and pray for the rest of us that God will take that fear away of "what if" and bless us with the understanding that EVERY child is a gift from God.

Happy Anniversary to you and DH and I hope you will go out and enjoy your very special day. You deserve it ! Maybe when you're out or before you leave, You and DH could take a moment with your entire family to share a special moment of prayer to remember the needs of others today, but then , go out and have a great time together.

I hope you have a wonderful day and thank you so much for having the courage to bring this issue to the forefront. Also, thank you for the wonderful poem.

~Lisa O~ 36 DH37 TTC#1 C5 CD14



http://circles2.fertilityfriend.com/home/24884


iVillage Member
Registered: 03-27-2003
Thu, 09-11-2003 - 8:48am
My sister had cerebral palsy. She died 4 years ago at the age of 24. She was always in a wheelchair. Someone had to feed her. She couldn't speak in any coherent pattern. But she always had a huge smile on her face. She loved M&Ms. After 24 years of hearing it, she'd grin and slur out the words 'Good girl' when someone asked, 'Carrie, what are you?'. I remember having to help with physical therapy. Always having to babysit when my parents wanted to go somewhere. Changing diapers on a 13 year old (yuck *lol*). And yet I'd do it all over again in a second if I could have my sister back.

Because of Carrie, we got to meet a lot of other really special kids. Including a doll named Lindsey with Downs. Because we're from a small town, Lindsey went to school with everyone else. Everyone adored her cheerful attitude, constant smile and refusal to give up because something was too hard. I think special needs kids are a blessing. They make us slow down and remember that everything in life is a miracle. Congratulations on YOUR miracle. I'll tell you right now that I'm over 30 and currently hoping this peanut inside me is sticky. I'm not going to have AFP but I will have an amnio so that I can prepare for my baby's wellbeing. But I will welcome a child with disabilities into my home, because I have already been blessed by my sister and emerged a much better person because of her.

Huggggggggggs. I've seen those posts too and, although I understand the initial feeling of panic, I also know they are receiving a special gift. A child who is different, not broken.

di, edd #2 5-16-04

iVillage Member
Registered: 03-26-2003
Thu, 09-11-2003 - 11:13am
Rebekah, most people simply skip over posts like mine because they don't know what to say. I especially value support and opinions from people who haven't BTDT because it comes from an unbiased point of view. Thank you for taking the time to offer your sweet words of support. I REALLY needed to hear them.

Heather

heatherfamilysig.jpg

iVillage Member
Registered: 03-26-2003
Thu, 09-11-2003 - 11:20am
Oh Anne, you always know exactly what to say. I've been so blessed to have "met" you.

Thank you so much for your words of encouragement. You're right, I know that negative comments are mostly made from uncertainity and fear. It's totally normal to be scared when faced with the chance of having a child with a disability. I really need to ask the Lord to help me with patience and understanding when it comes to this.

If I can just educate ONE person about Down Syndrome and how it doesn't have to be a negative, terrible experience but rather a beautiful and rewarding one, it would make it worthwhile.

Thanks Anne,

Heather

heatherfamilysig.jpg

iVillage Member
Registered: 03-26-2003
Thu, 09-11-2003 - 11:29am
Melissa, your post really brought a smile to my face. Thank you SO MUCH for taking the time to respond. DH and I have decided to go to a nice quiet dinner tonight. There's a memorial that is about 4 miles from my home, I'm planning on going there for my run and leaving some flowers. I wanted to find my own way to pay tribute on this special day.

Thank you for your sweet words about my angel Daniel. Just wanted to let you know also to help ease your mind that 80% of children born with Down are born to women UNDER the age of 30. I was 29 when Daniel was conceived. Try to relax your mind and ask ALOT of questions. :o)

Heather

heatherfamilysig.jpg

iVillage Member
Registered: 07-21-2003
Thu, 09-11-2003 - 11:33am
Hi Heather,

I want to say Thank you for your post. It was one of the most touching poems I have ever read. I will cherish it forever.

Today is definitely a very sad day for many but it should also be a day to celebrate life. On my way to work this morning, a lady calls in and explains how her husband was in WTC 1, and was on the ground level when it happened. He and a few of his friends made it out safely that day. Her husband and his friends decided to spend today celebrating life and went golfing. We should never forget what happened but we all need to move on and celebrate each precious day we are here.

I hope you enjoy your day with your family :-)

iVillage Member
Registered: 03-26-2003
Thu, 09-11-2003 - 11:37am
Thank you Lisa......you guys are the best!!

Worrying about having a child with a disability is a GENUINE concern and I hope I didn't come across in my post that one shouldn't worry about that. I think it's just all the negativity and sterotyping when it comes to Down that bothers me.

To help ease your mind, I want to let you know that 80% of children born with Down are born to women UNDER the age of 30. Try not to worry TOO much......I don't think you'll be as lucky as I was. :o)

Heather

heatherfamilysig.jpg

Pages