Wednesday, July 17, 2013

your words

In case you missed it, there were some wonderful comments on the last few posts I wrote. I am always so encouraged to hear others' perspectives and input when it comes to challenges we face regarding Down syndrome. I don't know how many readers go back and read comments left on previous posts, so in case you missed these, I'm copying them here for you. Thank you so much to the moms who contributed !

(And I'm adding some photos of Lily in between the comments, because who doesn't appreciate a little Lily love ??)





Comments from Two Paths ....




Cindy said...
Loved this. I remember those same feelings when Beth was small. That pain in the pit of your stomach. But today?As I read those words that she will never be a mama, the thought that came into my head was, "Oh yea." Beth is 28 and she's not a mama. But her life is so full and busy. Beth has talked about wanting a boyfriend, but never a baby. I'm glad you're not letting the should-have-beens rob you. The what-will-be path is pretty spectacular !





 eliz said...
My group home gal MA was never a momma. For 26 years she watched me adopt and give birth. She always told me she too was going to get married, she too was going to have a baby! :o) I never disagreed with her. Who was I to say! And then one day about 5 years ago, she and I were both 51 years young, she told me she wasn't getting married ever. She doesn't even want a boyfriend! And she never spoke of having a baby again. But the JOY she has LOVING on mine seems to be more than enough for her. Her cup is over flowing. Her JOY is contagious! And when our boys from Bulgaria came at ages- 5,6,8,8 and 10, MA immediately called them the "babies"!! She proudly tells everyone who will listen "I LOVE babies!!" And they think she means baby-babies- No she means her 5 "baby" boys with Down Syndrome!! LOL!!
She also has, like you mentioned- many brothers and sisters. She has LOVED and adored every one of her now grown nieces and nephews that her 7 brothers and sisters have had! And she now proudly tells people she is now a "Great" Auntie!

I have a sister 47 years old who never married, never had children and has none of the JOY that MA has!! (((HUGS))) I adore Lily, you and your family!





cara said...
I remember having one of these moments after Benji was born. I think we were still waiting on his genetic testing, or maybe we just found out. But I knew he had down syndrome, regardless, in my heart. I never went through the grief many mamas have gone through when I had him. I knew he was a gift, and I was so in love with him and who he was those first few days. I was ready to accept his having down syndrome. But I will never forget this one day I was in the shower. My mind wandered into the boy I thought I was having and how Benji would not be able to do those things I had hoped and imagined for him. It did not last long, but it was very hard to process. I chose to not stay there as well. And I continued on. I am thankful for this boy and who he is. Every now and then, I begin to think about his future in a way that is concerning. But then I get back where I am and cherish that day thinking about the Lord saying to not give thought for tomorrow.

Thank you for posting your heart Patti. I know how encouraging it always is for me and I know so many others as well.

LOVE the pictures!!!! xoxo

EN said...
I agree that Lily will be a phenomenal aunt someday - just like my sister is :-) And I can honestly say that Leanne has never questioned why she does not have kids. She is very content and accepting of her life. I may have referenced this article before but it bears repeating because it is so beautifully written: http://articles.washingtonpost.com/2012-05-02/opinions/35457574_1_extra-21st-chromosome-syndrome-chromosomal-defect George Will writes about his adult son with DS:

The eldest of four siblings, he has seen two brothers and a sister surpass him in size, and acquire cars and college educations. He, however, with an underdeveloped entitlement mentality, has been equable about life’s sometimes careless allocation of equity. Perhaps this is partly because, given the nature of Down syndrome, neither he nor his parents have any tormenting sense of what might have been. Down syndrome did not alter the trajectory of his life; Jon was Jon from conception on.


That's how I feel about Leanne. She is not the absence of a promise of what a sister should be. She is exactly as God made her and she is perfect in His image. And she, like 99% of people with DS, is happy with her life:

http://confessionsofthechromosomallyenhanced.blogspot.com/p/down-syndrome-has-been-part-of-my-life.html

I also think any of our children may not grow up to embrace the traditional notions of what adulthood is all about. Any of our children can opt not to get married or have babies. Perhaps they'd prefer to be a jet-setting career person or a devout humanitarian or clergy member. The most important thing is that you encourage Lily (and the others) to work hard to achieve her highest potential and use her gifts to help others :-) 



Tami said...
Love this post as it hits so close to home! My Emme Ann just graduated from preschool. She is the only child with Ds at the school. When they perform their little ceremony they call each child's name before they walk across the stage where they will stop by the director who asks them what they want to be when they grow up. Since the first graduation ceremony we attended we wondered if she would be able to do this. She did it! She was just amazing and so serious in her little cap and gown. We were so proud but a little sad at the same time because she said she wanted to be a "mommy" when she grew up. I still tear up when I think about it but in reading your post and the other comments people have left, I feel a little better. Most of the time this whole Down syndrome thing doesn't bother me in the least but every once in a while, it hits me.
I think this is my first comment on your blog which I stumbled across a few months ago. I really enjoy reading about Miss Lily and the rest of your family. After 26 years of marriage and a 20 year old "only child" daughter we were caught by surprise when we found out we were pregnant! We had suffered a miscarriage and endured many years of trying to have more children. We had given up and were actually enjoying being empty nesters. God had another plan and blessed us with our own perfect Emme. She is such an amazing little girl and it kind of works out great that it takes her a little longer to do things because we are old! I don't know that I would be able to keep up with a 5 year old typical child at the age of 52!
I always look forward to your insightful and honest posts and, of course, the beautiful pictures.

Thank you,
Tami


teal915 said...
It used to be a very sore spot for me that Ka dun would never be a mommy. It doesn't hurt me like it used to because of what you said. I like how you described it. I think it's exactly right. A choice. I choose to believe that Kamdyn's life will be fulfilled in other ways. That she will find meaningful love in her own way. Someone said to me once that maybe she won't know the live of a mother for a child, but maybe she will live everyone like that. I don't know if that will be true, but I think there is something to that statement. Kamdyn's love will probably be more pure and naturally unconditional. So I have no doubts that she will experience live to the fullest. I've heard several adults with DS talk about the subject of kids. Monica and David talked about wanting kids in their documentary on getting married. At the ndsc convention a couple years ago, they were asked how they felt about it at that point, and their response was "too much work". They wanted to snuggle and love the babies but not wake up in the middle of the night, change poop, etc. this year, we heard them speak again at a conference in Philly. They still say the same thing: too much work. They've been married for 10 years or so by now, so I doubt they will change their feelings on it. But now they both work in a daycare for kids with disabilities. I thought that was great. So I honestly, in my heart, don't believe Kamdyn will be sad about it. I think that if the time comes that she expresses it as so etching she does want, we will talk about it and work through it, but I don't think she will ever feel it is something she is missing.



Jenny said...
I've read this three times now, I can just totally relate to it. I remember when they first told me Russell had Ds they sat us down in a room and went down the long list of medical issues he would face. When the Doctor mentioned he would never have kids, I broke. I don't know why that devastated me the way it did, but it hurt so bad to hear that. I do remember the Doctor telling me though that it would be ok, that he would be "Cool Uncle Russell" And I know those words may not have comforted everyone, but they comforted me in that moment...And to this day. "Cool Uncle Russell", is not such a bad thing :)

MamaV said...
Frankly, we don't know that any of our children will be able to be parents... Until they are.
Or maybe Jesus will return before they get the chance.
Either way, God's path for each of us is the very best! Lily will be a blessing to those around her for a long time, I am sure!

M. E. Stephens said...
I found your blog today through a link at another blog. Reading your struggle I just wanted to say a few words in Christ.

First, there are plenty of "normal" ladies in this world who, for various reasons, are not able to have children of their own. Your sweet girl will not be alone shouldering this burden. By God's grace, she will rise above it and become the person God intends for her to be within that confine. It will hurt, I know, but she will have the opportunity to pass that comfort on to others, Lord willing - and so will you.

Secondly, I'm very glad for both you and her that you choose to believe that she will use her mothering skills for others. There are many aunts, sisters, and friends who have done so - whether they had children of their own or not. And, sadly, there are many mothers in this world who have no skills for nurturing the children they do have. God has given Lily a special gift and He will see to it that she can use it in a way that will both glorify Him and satisfy her. Your job is to encrouage her to that goal. :-)

And, remember this - if we never needed comfort, we wouldn't know how to pass God's comfort on to others. And, how great is the ministry of comfort in this hurting world? 2 Corinthians 1:3-4 Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.




4 comments:

cara said...

Thank you for posting these comments Patti! I did not get to go back and read them. They are all very encouraging. I had a hard week with Benji. Not with anything he has done, but with how others perceive him. We were out and about more, and I noticed more stares than usual without smiles accompanying them. And just some situations that got me thinking. I guess I assume everyone will love him like I do and see his cuteness and charm just like me. It hit me today that sometimes people are seeing a syndrome or whatever instead of the precious boy God has created. Breaks my heart. He doesn't even know. He just runs up to people and smiles and loves them. He reaches out for them thinking they will adore him in return. Anyways, I clicked on your blog hoping you had written knowing I needed some encouragement, and I am thankful you highlighted on these comments. :) xoxo`

eliz said...

I always read the comments! They have blessed me!! Wonderful women! Lily's video is so cute!! That has to be my new favorite song!! (((HUGS)))

Dakota Lynch said...

Those are very wonderful comments. I came across your blog a few months ago and I have been inspired in so many ways. I do not know anyone with DS but my cousin has CP. My cousin, you and Lily, and the Musser family have inspired me so much that when I was asking God what I could do for my 16th birthday he put two simple words on my heart "missions trip." I prayed more about it and asked around and I am leaving in 6 days for a Joni and Friends Family Retreat as a Short-Term missionary. You have inspired me along with your sweet Lily to do this. You inspired it, God put it on my heart, family and friends generously donated, and God made it happen. Thank you so much.
God bless,
Dakota

Race Bannon said...

She won't have time for children once her singing career takes off...