Wednesday, July 10, 2013

two paths

Last night the children and I were relaxing in our sunroom after a hot day here in Oregon. There was a cool breeze blowing through the screened windows, and I was nursing Hayden in one chair while Lily did the same with her doll in another. I watched her tenderly caress her baby's cheek as she whispered shhh - shhh - shhh to her...she leaned over and kissed her baby's forehead and sat her up to pat her back after she finished "nursing". She was the perfect little mama, and I felt so much love for Lily watching her display those instinctive mothering feelings my other little girls have shared.





And out of nowhere came the Down syndrome bus.

That ugly, joy-sapping thief came barreling down the highway of my mind, ready to scatter any thoughts of happiness in a thousand directions.

"Lily will never be a mama," I thought.

Do you ever have things hit you like that - maybe not even related to Down syndrome - and it's more than just a thought, it's a physical pain that strikes the pit of your stomach? In fact I'm feeling it right now trying to describe it.

I hate that feeling.

The phone rang and I handed Hayden to Abigail, while I talked to a friend. She cradled her baby brother in her arms and slipped his binkie into his mouth. Lily climbed into the chair across from Abbi and cuddled her baby as well. She rocked and shushed, sang and swayed her baby to sleep. I hung up the phone and fought that horrible feeling of dismay, and thought about all the things in the world that just don't seem fair. Little girls should grow up to be mamas, shouldn't they ? Little girls with instinctive, mothering, nurturing hearts should be able to have their own little girls some day. Shouldn't they ?








Lily slipped off her chair and wandered to the table to find a bag of wipes to change her baby. She looked so sweet attempting to clean her baby that I caught the moment on video to show her daddy later on. She chattered to her baby and I caught little words and phrases I use when changing Hayden. I couldn't help laughing at her determination and precision as she carefully laid down a wipie and not-so-carefully flopped her baby onto the floor.







And right then, as Abigail and I laughed at her little sister's diaper-changing expertise, I thought to myself...this is a fork-in-the-road kind of moment for me.

I have two paths I can go down in my mind. One is a path of self-pity and sadness and grief and what-should-have-been. I can go down that road if I want to - there are some pretty big ruts there from years of grinding the wheels of my mind.

But the other path is the way out. It's the one I have to deliberately decide to go down, because my natural inclination is to choose the other. This path is the one that looks truth right in the eye - Lily will never be a mama - and reframes the sadness that goes with it. She won't ever be a mama, but she will always have babies around her to love. She has ten brothers and sisters who will no doubt give her multiplied nieces and nephews to cherish and nurture and devote herself to, and if I really believe that God works all things together for the good, I know He has wonderful things ahead for Lily.

Will she know she is missing out on the gift of motherhood some day ? Will she feel heartache when the day comes when she realizes that isn't a possibility ? I have a tiny inkling she will.

I'm bothered by the stereotype of people with Down syndrome "always being happy" - because I see on a regular basis that it simply isn't true. Lily has a full range of emotions just like any of my other children - she is stubborn, she is feisty, she shows disappointment and sorrow and even shame. And I have no doubt that whatever her intellectual capacity is when she becomes an adult, she will still run the gamut of emotions that she does today.

But isn't that what we all go through as "typical" adults ? We have disappointments and frustrations, we deal with grief and hardship and uncertainty and unfairness... along with joy and happiness and contentment and excitement and love. Each one of us will go through hard times in our lives - there is no escaping that on this side of Heaven. And each one of us has a decision to make about how we handle those unfair things we are handed.

We can let those things break us or shape us....



































I'm choosing the latter.


It hurts that Lily won't be a mom some day. But this is life - sometimes beautiful, sometimes broken... but  I'm choosing to be thankful.


I am so thankful for this little girl, the one who starts almost every day with a smile, who fills our hearts to overflowing with her spirit of joy. You can't be around Lily without noticing her zest for life, and I'm going to do everything I can as a mama to make sure she carries that same spirit into adulthood. I'm going to make sure that "Aunt Lily" has every opportunity to employ her nurturing instincts on dozens of nieces and nephews, and I have no doubt her siblings will reap the benefits of that as well.


I'm not going to allow the should-have-beens to rob me of what-will-be, and I'm going to teach Lily to do the same.








"Two roads diverged in a wood, and I-
  I took the one less traveled by
  And that has made all the difference."

~Robert Frost

25 comments:

Mariska said...

Beautiful post. Thank you!

Crystal Kupper said...

Love it!

The Holt's said...

Just what I needed today. I have been struggling the past few days with this.

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!

Mary said...

What blessed nieces and nephews they will be!
You have such a great outlook to look truth right in the eye, that way you can keep the bus from sneaking up.

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

Priscilla said...

Beautifully said.

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 :-)

I love you so, Patti! You inspire me so very much!

Naomi said...

Love all the pictures :) lily will be (and already is) a great auntie!! Xo

Becca said...

I feel that too, and in a different way, because that also means I will never be a grandmother. For Sammi, I do hope that she'll find something to fill that gap by perhaps working in hospital or day care. I know she'll be amazing with babies and children.

Becca said...

Btw, that video is adorable!!

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

Elle's mommy said...

Perfect in every single way...

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.

Juliana Kohler said...

Thank you, Patti, for always being so honest and ultimately showing your love and dependence on what God has for you. Choosing to have joy...what a wonderful example to us all and especially to your children.

Anna Theurer said...

Beautiful post and I seem to hit that fork in the road often. Of all the things that I thought about in the first 24 hours after getting Ellie's diagnosis was "I will never be a grandparent". Strange thought, but there it was. Here I was a new mom and I was already thinking grandkids! I don't know if Ellie will ever want kids and I am sad that she doesn't really have that option, but I am trying not to think of it too much. Thank you for your honest post and as usual, lovely photos (and video!) of Lily.

The Graham Family said...

This is the BEST! I love the video. Too cute. LOVE it.

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 :)

Great post Patti :)

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!

Lori said...

I love this post :)

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.

Patti said...

M.E. Stephens...
thank you so much, your words were such an encouragement ..so glad to connect with you!
xo Patti

Gely Reyna said...

Love your blog u always know how to say it the right way :)

Gely Reyna said...

Love how u always know how to say things the right way :)