Re: Re: New Member w/5 week old T21 son

Posted August 24, 2006 · August 24, 2006

>> Hi,> This is my first time writing and first time joining a T21 group.> 5 weeks ago today I gave birth to a beautiful baby boy we named Noah.> Two days later he was diagnosed with T21.> My Husband and I were devasted. (no disrespect intended)> Noah is the first child of my husbands.> I have two non-T21 daughters from previous marriage.> > I tend to hold Noah alot and feel as though I need to shelter him from comments *IF* others ask or notice he looks a little diff. > I am so drawn to this baby! He has stolen my heart!> > We do not tell others Noah is different. > Honestly we do not know how to handle it > I want to raise Noah as if he is NOT different but I'm not sure if that is fair to him ?> Meaning: at this particular time we have opted out of taking Noah to Childrens Hosp for Developmental Guideance.> We're not even sure what it consists of ?> > I hope to learn alot from other parents.> I/We have so many questions and sometimes confusion clouds our thinking.> Although my belief in God is strong my mind still wonders.> > Why Noah ? Is it something I did ? Is it because I was being selfish and wanted to give my husband a child even though I am 40 yrs old ?> Is it something Husband did ? Is it a gene that one of us carries or did it just happen while the cell was splitting ? > Is it passed from one of our parents ?> (Husbands mother has issues. > Sister in law believes their mother passed Autism to her son.)> > Thanks in advance> > Confused,> Leann and family in Ohio>

hi leann and welcome congrats on your little boy and yes it is very comon to feel very overwelmed by all thats going on my alex is now 2 and wood not b with out him he has brought such joy in to r house and yes he's just hit the terable 2s so not much differance there and yes we try not to make alex feel differant to the others i hope we have

hugs sylvia+alex

Posted August 24, 2006 · August 24, 2006

Hi Leann. I am Trish and my son Andy is 34 and has DS. He is the mosiac type. Your story sounds a bit like mine when my son was born when I was barely 24. We didn't know until Andy was four months old that he indeed had DS. He was 3 months old when the Drs. suspected. Of course, back then, we had to dig for any information we ever got. I, like you, thought there was something my husband or I had done. Our Pastor at the time talked with us and assured us we had done nothing wrong. I feel badly for my son at times that he sees how his brothers-in-law live and wants to be just like them. Well, he has his dreams and we won't take those from him. Andy is a very happy young man. The truth is, the Lord gave Andy to us instead of someone else, and he has been a blessing to us. Everyone wants a perfect child but really, what is perfect in this life? Why the Lord chose to give Andy to us just like he chose to give our two

daughters to us. We are very grateful for the children the Lord gave us. Andy's sisters are very good to him and they help him a lot. His eldest sister tutors Andy so that he reads even better. He is fortuantate enough to have five nieces and a nephew who just pamper him. He loves each and every one of them. We are thankful to now live near our family to have this great support we needed before moving to IN from NM. Andy wanted to live near his sisters and their families. His dream has been realized and he does even better around his family. We have always treated Andy like we would anyone else because he is a person too. He does really, really well. I can tell you this, all the help you can get for your child, do it! It is so important that you begin teaching and working with your baby right away. We are Christians and I prayed for this child and I know that the Lord doesn't make any mistakes. Andy is such a

joy to us and our family as well as others. Our family and friends just love him to pieces and he is such a big part of so many people's lives. We don't know what we would do without him. He has far exceeded our expectations for him and at age 34 and soon to be 35. He has accomplished more than we had ever thought. However, we never said he couldn't do this or that, we just tried or allowed him to try the things he wanted to do. For example, we were told by a teachers Aide "you think he can learn to read?" and yes, we thought so and he is! It doesn't matter to us that he doesn't have a college education, he has given all of us an education and one many have missed out on in life. He is a very active and personable young man who has hopes and dreams just like anyone else. He is our hero in this life because he doesn't let anything or anyone hold him back from the things in this life he wants to accomplish. His love for the Lord is very sweet and special and he has been such

a testimony to so many who have told my husband and I because of our son they came to a better relationship with the Lord. Andy has accomplished things on his very own because he wanted to accomplish certain things without anyone's help, and he has! So, just do all you can for that sweet little baby and never give up or listen to anyone who will try to bring you down. There are so many people with Down Syndrome that are just so amazing and such an encouragment to even this veteran Mom. There is so much more out there today to aide our babies, children and adult children that time will just show you just how great your child will do. So, just hang in there with your child and just see how well he will do with all there is out there to help parents and children. I know there are so many parents on this sight to help you that you and your child will succeed. The great news is that your not in this alone as we were. By the Grace of God, my son has done so well and

continues to. He gradutated from HS with Honors and we are very proud of him and all he has accomplished along the way to his almost 35 years of life. If there is anything I can do to help you, just write me @ andy2trish@... I hope I have been of some help and encouragement to you. God Bless! Trish : ) sylvia <sylviabrtpck@...> wrote: >> Hi,> This is my first time writing and first time joining a T21 group.> 5 weeks ago today I gave birth to a beautiful baby boy we named Noah.> Two days later he was diagnosed with T21.> My Husband and I were devasted. (no disrespect intended)> Noah is the first child of my husbands.> I have two non-T21 daughters from previous marriage.> > I tend to hold Noah alot and feel as though I need to shelter him from comments *IF* others ask or notice he looks a little diff. > I am so drawn to this baby! He has stolen my heart!> > We do not tell others Noah is different. > Honestly we do not know how to handle it > I want to raise Noah as if he is NOT different but I'm not sure if that is fair to him

?> Meaning: at this particular time we have opted out of taking Noah to Childrens Hosp for Developmental Guideance.> We're not even sure what it consists of ?> > I hope to learn alot from other parents.> I/We have so many questions and sometimes confusion clouds our thinking.> Although my belief in God is strong my mind still wonders.> > Why Noah ? Is it something I did ? Is it because I was being selfish and wanted to give my husband a child even though I am 40 yrs old ?> Is it something Husband did ? Is it a gene that one of us carries or did it just happen while the cell was splitting ? > Is it passed from one of our parents ?> (Husbands mother has issues. > Sister in law believes their mother passed Autism to her son.)> > Thanks in advance> > Confused,> Leann and family in

Ohio>

Posted August 25, 2006 · August 25, 2006

banner that proclaimed, "DISCOVER THE JOY!!!" Discover the JOY. Discover the joy!

,

I thoroughly enjoyed this email of yours. All that you said is true for our kids. I empathize with the "concern" for Martha's future and wrestled also. For me it was her schooling and learning, as I homeschool her. But the Lord told me that "she'll learn." That's all. She'll learn. It may take a little longer, but she'll learn. Amazing how 2 words could give such comfort.

And then I read the part of your email listed above and I had to send the link that tells what our church does for our "JOY" individuals - birth to death.

www.thejoyministry.org

We're even having our 2nd JOY conference on teaching churches how best to include and minister to those with disabilities....March, 2007.

I loved reading about the Scripture verse given to you. Before Martha was even born, the one "given" to me was 1:7 "every good and perfect gift...comes from the Father above." She is perfect...most especially in His eyes.

Tina

..

Posted August 25, 2006 · August 25, 2006

you said it so eloquently...

I have one thing to add from the book "Expecting Adam"

"This little boy may not look like what you asked for...He may not have the features you requested, or be able to perform all the tricks. But put him in place, and he will light up your life. You have no idea how much magic is in him." --from Expecting Adam

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of OatesSent: Friday, August 25, 2006 2:01 AMDown Syndrome Treatment Subject: Re: New Member w/5 week old T21 son

"I am so drawn to this baby! He has stolen my heart!"

And may that be the reaction of others to him...

Since my na Ruth was born 5 1/2 years ago, I can't count the people who've smiled just looking at her. I believe that Yes, God made our babies different. I don't look at her as a kid with 'Birth Defects' but 'By Design.' She has opened MY eyes and my heart, and the eyes and hearts of many, many other people. She is 'color blind'-- or body piercing blind, or tatoo blind, or weird hair blind, or ____ blind-- she smiles at EVERYONE, and hey! Everyone needs a smile Ü

Embrace life with your little one. Soak up his innocence. He will grow; he will establish himself with his own personality, and all too soon he'll want to be running the show. Some things about his Tri21 will complicate your life-- extra doctor appts, therapy sessions, and just the plain ol' everything takes longer, takes more repetitions... But life with him WILL be extra special, too.

na, the youngest of our 8 children (now 25 to 5), was born when I was 43, so like you, I'm an 'older mom.' And I've LOVED having a baby who has STAYED a baby long enough for me to fill up that 'she's my last baby' part of this hungry mother's heart!! na is finally outgrowing her size 3 clothes, so she really has been little long enough to suit me. (Laugh if you'd like. I do LOVE babies! It's teenagers that butt heads with!!)

We do not tell others Noah is different.

Well, Noah IS different. Nothing is wrong with different-- we're ALL different. His difference just has a name. But in more ways than he is different, he is the same-- he needs YOU, he needs your love, he needs your pleasure in him!

Although my belief in God is strong my mind still wonders.

God looks at the heart. How could he stir compassion in a 'perfect' world? Where there are needs, he can stir people to meet those needs. His goals are SO different from ours! Ours include: ease, convenience, 'happiness,' 'excellence,' productivity, and performance. His are more along the lines of heart, relationships, character, service to others, selflessness. "Love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control." These are qualities that he wants to grow in us. Sometimes, by having a child with special needs, we, and those around us, have more opportunities to grow his way. God want us to see beauty in differnt places. He cares very little for comfort or NOW. With eternity at his disposal, he doesn't mind giving us time to work on these things!

Why Noah ? Is it something I did ? Is it because I was being selfish and wanted to give my husband a child even though I am 40 yrs old ?

These are questions that many of us consider. My own wondering has led me to know that na, like all children, is "a gift from the Lord." She is created in His image for a purpose. I personally think that part of her purpose is well stated in Proverbs 15:30. "A cheerful look brings JOY to the heart!" That fits my na to a T. And if we already have an overabundance of JOY in this stressed and busy world, well, I haven't had too much in my life to never want any more!!!!

On one particular morning, I was wrestling in my Quiet Time with the weight of my responsibilities in na's development. I was thinking that if only I could do this or that, then na would ___________. Like if only I could get her certain meds down her throat, that she'd have fewer long term negative consequences of that extra chromosome... or reach her fullest potential, or be brighter, or.... I was carrying the weight of her future development (or lack thereof) on what I was able to do for her. At the time, I was NOT able to get her to take these meds (which I still believe are important, but she still will not take.)

Anyway. I was wrestling, REALLY wrestling. I finally came to the point of acceptance in my heart that I, I could not make this happen. In my heart, I put my hand on the door knob of the door "Willing to share in the suffering." I came to the point of being willing to share in the suffering of those who had gone before me. Those who bore the sadness, if you will, of not being able to make a difference, or alleviate the handicap of their loved one...

I turned the door knob. I pushed open the door. Lo and behold!! Instead of finding resigned sadness, I found that I had entered Narnia!! I was greeted by a banner that proclaimed, "DISCOVER THE JOY!!!" Discover the JOY. Discover the joy! By accepting that I could not change na, that there was no 'magic wand' for me to wave, I entered a new place in my heart. Since then, I've discovered the joy EVERYWHERE! na's simple delight at 'the same old thing' for 'the millionth time' has deeply affected me! I've found joy in her joy-- joy in dandelions, for instance. Joy in bubbles. Joy in pocketbooks. And beads. And puppies. And books. And outdoors. And bugs (a shivery sort of oo-ey joy!) and brothers and sisters and books and dollies and grits every morning and ice cream!! and popcorn and chicken nuggets and french fries and dancing and music and. That's it-- it's ALWAYS AND. na's GLAD about nothing, glad about EVERYTHING. I'm finally getting it-- "This is the day that the Lord has made. Let us REJOICE and BE GLAD!!"

May God BLESS you and your husband and little NOAH. May he fill your life's journey with finding joy wherever you look!

"May the God of hope fill you with all JOY and PEACE as you TRUST in him, that you may overflow with HOPE by the power of the Holy Spirit." Romans 15:13 (I think, or 13:15. At 2:55 a.m., I need to go back to bed!)

My heart is with yours--

susan Ü

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Posted August 25, 2006 · August 25, 2006

I just love that quote from "Expecting Adam" - I've read the book twice and each time that quote makes me cry.

Kathy

RE: Re: New Member w/5 week old T21 son