Saturday, November 10, 2012

Enough

Last February I posted this letter to Lily...it generated so much response on this blog and other forums that I'm re-posting it today, and dedicating it to the thousands of special needs mamas who hope to be "enough."


*******************


I've debated posting this letter a million times. Mostly because I know I have readers who will not get this. Some readers won't because they love me and my family and Lily so much...they just don't ever want us to hurt. So to prevent that hurt- or stop it- they will say things like, "please just accept Lily for who she is. Just give her time, and trust that she is who God made her to be." Some readers won't get this letter, because... they simply can't relate. As understanding as they might be, they will never ever know how it feels be the parent of a child with special needs. And believe me when I say- I don't blame them for not being able to relate. I'm in a club that I didn't choose to be in myself, although I wouldn't bargain my way out of it if I could- I've learned too much, loved too much, grown in ways I didn't know I needed to, discovered little rooms...vast rooms...in my heart that I never knew existed since having Lily. I cannot imagine, and I don't want to ever imagine, life without Lily; this letter has absolutely nothing to do with a lack of love for her or a desire for her to be someone else. She's my Lily, and I truly believe that quote at the top of my blog...the one that says there was no mistake here. I believe it with all my heart.


But there are some days when I dream....





Dearest Lily,

It's Wednesday afternoon and you are sleeping soundly in my bedroom. I can hear the purring of the sound machine, set to rain, as I type. Your older brother Josiah, newly married, came over to take all of your siblings to the park to play basketball. Mackenzie is running errands and Daddy is working on his sermon for tonight. And I just woke up from a dream...

I have this recurring dream, Lily, and I just have to write to you about it, in hopes of making it stop. I don't know why it comes, or why I always have it during afternoon naps. I never seem to have this dream at night; only when I doze off briefly with your brother Jackson, or with you tucked close by my side does it arrive. And I don't know how the same dream could play itself out so many times in my head, always with the same recurring theme and subsequent feeling when I wake up. You'd think that five or six or seventeen times was the limit for one dream...but it never seems to want to give up. It's always there, tucked away in a quiet and hidden corner of my mind ...obviously... ready to replay itself when I least expect it.



It always begins innocently with some scene from our family life: a meal around the dinner table, a vacation or an afternoon spent outside. In the dream your brothers and sisters are laughing and talking, and life seems so very normal. Everyone is as they are in real life...Tyler is his teenage self, his voice changing and his mannerisms those of a boy turning into a young man. Jonathan smiles and shares a joke with me, and Caleb puts in his two cents as well. Noah is grinning, his mouth a mixture of baby teeth and grown-up ones, his eyes twinkling blue. Abbi and Jackson are talking or playing, and Mackenzie and Jason and Josiah take their turns in the dream as well.

But when I turn to talk to you or play with you, there is a shift. A subtle change, and I don't recognize it at first- because it seems so very normal. So natural, because the Lily I'm talking to and playing with is exactly like my Lily right now -- only without Down syndrome.


She smiles exactly as you do, crinkles her nose and tilts her head to the side, and her beautiful blue eyes turn to half moons as she does. She turns her head to laugh at something one of her brothers says, and that same little belly laugh erupts from her lips, just as it does from yours every day. Her honey colored hair is pulled tightly into two matching pigtails, and little wisps have fallen out beneath, and nothing about this Lily would make me think she's an imposter....but she is.


Because when this Lily opens her mouth to talk, there is no hesitation or pause. Someone asks her what she wants, and although her voice has the same familiar tone and quality of my every-day-Lily, this one answers clearly and distinctly. I ask her a question again, not sure how it's possible that my Lily can voice her desires so clearly, and again this phantom Lily gives a reply, her words just as precise and intelligible as any of her siblings.


And yet in spite of this new-found skill, nobody in the dream seems impressed or astonished at what is happening before our eyes- this Lily talks and responds and takes part in our conversations as easily and naturally as any toddler would...her sentences are still simple, and her phrasing not quite right, typical of the words any two year old might use. But she speaks, and when she does, I feel like a whole new world has opened up between me and my daughter, and I hold her and look into her eyes and ask her dozens of questions, not believing this could be happening.

This Lily tells me what her sister is doing, points to her brother and calls him by name, smiles at her daddy and says I love you, reaches her hands out for me and calls me mama...this Lily is everything you are today...without the Down syndrome.

 She is gentle and sweet, coy and engaging, she is feisty and demanding, and she is just as loving and playful and beautiful as my real-life Lily. But she has no limits. Because when I set her down to play, her movements are fluid and sure, she runs and climbs and plays without any work or hesitation, her gait is sure, her motor skills organized and perfect, and just as when she opened her mouth to speak, I am amazed at what she can do. And yet no one around me is astonished, no one questions how these changes came to be.

And so I ask her the question that's been tugging at my lips this whole dream, because I want to know, really must know-   who are you?


"I'm Lily!" she laughs, and there isn't anyone in the world who could convince me she isn't.



And that's when I wake up.


And Lily, I wish I could say that there isn't part of me left behind in that dream, a tiny, maybe hidden piece of a mama's heart and hope for her daughter, that so desperately wishes for things to be different. Because no matter how much I love you, dearest Lily, no matter how fierce and protective that love, and no matter how proud and accepting and confident I am, and no matter how valuable and cherished and completely beautiful you are- the real-life Lily, the one who really does have Down syndrome - there is a dream that won't go away.

And there are people who just won't ever get this, Lily. Not because they don't want to, and not because they don't try. But until you've walked a mile in my shoes.... or been in this particular dream...



So here we are, sweetest Lily, and I know that in spite of my plea for people to recognize that I do know you are a gift and that I wouldn't wish away the Down syndrome if I could because of all that I've learned and all the friendships and beauty your life has opened up to me, I know there will still be some who don't understand....what it means to be the mama of a child with special needs.

We hurt when our children struggle.

We cry when nobody is looking, because we're supposed to be strong.

We are fiercely protective of our children, because we don't want anybody to see them as different, and God help the person who makes us think they are.

We want acceptance for our kids, want them to be seen as they should- as perfect, as beautiful, as capable, as the person they are- the person, because in spite of our children's challenges, they are every bit as human and as worthy of life as any child....

And yet there are times when we dream.

There are times when we see a "typical" child alongside our chromosomally enhanced children, and reality shows us that there is more to a syndrome than a name.

There are moments when our friends or loved ones use words that make us cringe, when even physicians or professionals or those who should know better use stereotypes or outdated phrases to describe our children, and we have to decide whether to be bitter or better.

There are instances in this journey called special needs, temporary roadblocks so to speak, when we wonder if we're really cut out for this job, this hide of a rhinoceros and heart of a child role that we're required to play. We're not supermoms, and we don't consider ourselves saints for just loving our children - to imply that we are, hurts --  because loving our kids is as easy as breathing.

And yet at times we do feel stretched to saintly status and really wish that we could go back to "earthly" motherhood....those days when we didn't have to question everything we did, wondering if we're doing enough, getting our kids the help they need, exploring every option for giving them the tools they need to do well in life, and then wondering again just how much is too much. Back to the time when parenting - in comparison to this - was almost effortless, when we didn't watch milestones come and go and ask ourselves, "is it something I'm doing wrong? Or not doing at all? Or is this just because of special needs?" Oh, the luxury to know that those milestones are truly coming, and never have to question if our children will get there....and if they don't, to wonder if it was because of their diagnosis, or because we just weren't trying hard enough.

Because that little girl, darling Lily? The one who visits me in my dreams, looking hauntingly like you? She taunts me with her almond eyed smile, her perfect articulation and smooth movements and sharp mind. She mocks me with her charming grin, the tilt of her head and the surety in her voice as she answers my simple question: Who are you ??

And mostly she just makes me wonder: am I doing enough?

Am I trying enough, working enough, praying enough, investing enough, reading enough, asking enough questions, seeking enough help, saying enough, doing enough, being enough?

But that's when I stop and say ---



Enough.

I cannot do this job, cannot be your mama, cannot live this way, wondering if I'm enough.

I have to trust that not only did God give me you, but that He gave you me, and that apparently He believed I was up for this...that I was enough.

I might drop the ball at times, dearest Lily, might miss something at times, might not read enough or try enough or ask enough...but I do love you more that life itself, and at the end of the day I choose to believe that is enough.


And if it takes a million dreams to make me wrestle through that question, so be it, because I've decided today that my love for you is....


...enough.


Love always,

Your Mama oxoxox

50 comments:

Kelly Marin said...

Awww I love the pictures, and even though I might not understand I love the post. I know as mom's we don't take credit for a lot of the amazing things we do, so from me to you Patti You are Amazing!

Megan said...

I'm not a mom yet of a precious child like Lily but soon (I am adopting Sophia C. from RR). you articulated your dream and feelings so clearly I could felt like I really did feel the emotions you feel. When I finshed reading it what came to my mind was this: I believe families can be together for all eternity and when we die and our spirit returnes to our Father in Heaven we will all be "perfect and whole" I believe in your dream you are seeing Heaven where your sweet Lily is whole everything in its right order. Please don't misunderstand I am in no waying saying that Lily, your Lily isn't perfect or just the way God intended her to be. I believe we are all on this earth to learn, grow, and teach. Lily is a special spirit and is here for a special purpose. God Bless you and your family. May that dream not make you doubt but bring you joy in seeing Heaven.
-Megan
www.myjourneyoftheheart.blogspot.com

Dwyer family said...

Wow, Patti, I'm sitting here bawling like a baby as I read your post and look at my Violet. It was just beautiful and completely appropriate and totally hit home. Thank you.

Karly Jaco said...

This speaks right to my heart, every word. Your words could have been plucked right from my thoughts...sometimes it's just hard, mostly we are thankful, and things are great, but like you said there are those reminders that pop up. And we can;t do it on our own. I have to rest in the grace of God and trust that HE will allow me to be used in my children's lives, and others.

Bless you for writing this and putting it out there. :)

Anna Theurer said...

Wow, this really hit close to home and has me crying. Beautifully written, Patti. Great photos of Lily!

Deanna said...

love. amen. (and love the shoes)

Jenny said...

I don't even know what to say about this post...It's beautiful, perfect, and describes exactly what my heart feels often. I cried through the entire thing. Thank you for sharing this Patti.

Vestboe said...

I am the mother of Adam, who is 2 1/2 with Downs. He is the love of my life, if you can say that. I thank God for him everyday. I do however daydream sometimes what it will be like to meet him on the other side as a whole grown man. He will probably get married, have children of his own, and do all those things a healthy person is able to do. I believe that Christ's sacrifice has not only paid for our sins but has won over death that we all may be resurrected with perfect bodies. There is absolutely nothing wrong for you to have these deep desires for your child. I believe that as a mother who loves your child, you SHOULD actually want that for her. But of course, at the same time, we accept God's will and love these little spirits with all our hearts and wait for the day when we can see them as they really are inside. As some of the greatest spirits who ever came to earth.

Nina said...

Thank you for your honesty and transparency. Few understand the almost conflict between the fact that we love our children dearly, see them as incredible gifts, etc., but still ache due to their struggles and society's lack of acceptance. God has a plan in creating these children just as He has and we'll all work together, seeking and fulfilling those plans. Your honesty helps to give all of us strength to meet the challenges.
With a grateful heart!

Laura said...

Although I've never dreamed Ben without Ds, I often wonder what he would be like without it. So I totally related and enjoyed this post!

melissa said...

I haven't had this dream at night but I often daydream about it for my Abster... :/

Mrs. K said...

Lily Anne, grammi likes your red shoes and your BEAUTIFUL smile. Will you please give Mama and Daddy a big hug and kiss from Grammi?
Patti, I agress with Megan, you are getting a glimpse of heaven. God is reasurring you Lily is perfect in everyway.

Mikaela said...

I have been following your blog for a while now, and although every single post you make has touched me in some way, this particular one, on this particular night, really hit home. I have a daughter with a genetic abnormality that results in something called Kabuki Syndrome. I am five years into this journey, and I still have this thought that maybe reality is all a dream, and I'll wake up with this syndrome-free daughter who has no limitations set on her life. That when someone talks about having to approve of boyfriends, sending her off to college, and watching her as a mama someday, I won't cringe in fear that those things may never happen for her. We are allowed these dreams, to bond with those children we were expecting all along before special needs was born instead. And like you, I wouldn't change my daughter, I wouldn't change what I have learned and gained in this journey, and I wouldn't change what mothering her has done for my entire spiritual being. But I get it. Thanks for describing so beautifully how I feel so frequently.

cathy said...

Bless you, dear Friend

xoxo
cathy

Natalie Nelson said...

My heart breaks reading this because I DO know how you feel. I have not had your dream but I have thoughts along those same lines. I love my Tily and wouldn't want her to loose any of that magic that pulls people to her and yet I wonder what it would be like for her to not have the delays, the health issues, to live a life without those challenges (and yet I also am grateful that she will not have to face some of the challenges others her age will face). I know God has given us these special charges to look after and it is heart wrenching when we see them struggle. When we see others treat them unkindly. I just think "Oh, if they only knew her they wouldn't even think of being unkind. They would love her so much they would never want to hurt her. Reading about your dream I had this image of My Tily being the way you described your Lily in your dream. Looking the same having that same sweetness about her and all her mannerisms but non of the delay. Non of the health issues. Oh I long for that day and yet I cherish the time I have with her here also. We are blessed. I have conflicting emotions about Down Syndrome. I have asked myself many times What will she be like in the life here after? Will she be the same? Will she look the same, act the same? And from reading this post I have received my answer. And that answer is yes. Only with out the Health challenges. With out those delays. And she will still be the same. Thank you for that. You may not have known it but your words your dream are the answer to my questions and prayers.

Shannon said...

I restle with this thought often. Fiona without Down syndrome- She isn't Down syndrome, but she would not be the same person without Down syndrome. Of course I want her to not have to struggle to fit in in life, that is my dream for her to be accepted. But that extra chromosome makes her who she is- her personality would be different without it. I love Fiona. I love Fiona with Down syndrome. I wish she didn't have Down syndrome. I guess that's why I don't get a choice in any of this, God knows what he is doing.

Becky said...

Oh, this was beautifully worded and I do completely understand. Those challenges are what pull at a mother's heartstrings and make the conflict that arises in your dreams. Even though my daughter is almost five, I still wrestle with feelings similar, especially as the delays become more and more apparent. BUT, as Kristen talks more and that little person inside emerges more and more, I fall more deeply in love...more each day than I thought I was the day before and that will help those dreams evolve into something amazing in the end. Thanks for being so real and opening your heart to us all.

lovemy3 said...

Oh Patti...this one hit so close to home. As we are rapidly approaching Hailey's first birthday, I haven't had this dream sleeping...it has been in my daydreams. You couldn't have worded it more perfectly if you were inside my head and heart. Thank you for this post (as I type with tears streaming down my face.) We all need to realize...we are "enough" for our children! I hope you don't mind...I may link this on fb or on my blog soon.

Deborah said...

Thank you for sharing so honestly and openly. This hits home. Our family memorized Lamentations 3:22-24 after Ben was born. The part that I hold on to is "The Lord is my portion; I will hope in Him." I'm thankful that God is our portion and that He is enough (for me AND for Ben).

Jennifer said...

These pictures are so precious. I know you love Lily more than any other person could and that will always be enough. Thanks for sharing your heart with us.

TheFoleyFive said...

absolutely, perfectly, so wonderfully articulated. I think everyone who reads this will totally grasp your heart and emotion behind it...you should print your blog into a book someday

Day to Day Mama said...

This is beautiful and perfect. I needed to hear this today. Thank you so much for sharing.

angie said...

I can so relate to what you are saying. My developmentally delayed son is so beautiful and perfect just the way he is. I wouldn't change a thing. He is the most innocent and pure little four year old with nothing but love to offer everyone he meets. I have a very close friend who gave birth to a son three months before my Luke was born, and when we are together, it is a glaring reminder that Luke has some serious challenges, and I see the way her son recognizes that Luke is different. Sometimes it's all I can do to not cry when it happens. I imagine sometimes what it would be like if Luke were right on track with all of the other kids his age, but then he wouldn't be Luke.

BTW, I love these pics of Lily- those red shoes are the best! :)

cara said...

Wow Patti!!! This brought me to tears. It is strange because every now and then I will wonder what Benji would be like without that extra chromosome. What would he talk like and be doing, etc. But at the same time, I would not want my Benji without this extra, special chromosome because I truly feel it is part of what makes him SO extra special- I know you know what I mean. There is something SO special about down syndrome that is just contagious. But there are times that I do think about the challenges. I think about how much work it has taken him to walk or to feed himself. I feel SO protective over him unlike any of my other babies. I cannot leave him with a sitter or at the church nursery because one cheerio or fishy cracker could cause him to seriously choke. His body is more fragile. He works and works at therapy just so happy to be with his therapists. But it breaks my heart when I see how tired he gets just walking. What is nothing for us is truly work for him. And sometimes reality sets in about the cruel world around us when we are out and the stares are obviously rude. OR people mock him like some ladies did at a restaurant we were at for Anna Rose's birthday. They were mocking him, trying to get pictures of him and video, and when we left one said, "Goodbye hotness in a mocking voice." It was sad. The reality is that some people see our children as children that should have been aborted. I can hardly even type that. But it is true and heart breaking. I just want to protect him from ever facing the cruel world. And so on.

As far as if you are doing enough, I love how you came to the conclusion that God gave her to you and He has seen you perfect to be her mommy. Today He encouraged me with some beautiful verses about Elijah and the widow. Whenever I am feeling so discouraged about how I am doing, I am so thankful for those verses. Her oil never ran out- God supplied all her needs and He will ours as we trust in Him for this precious job He has given us with homeschooling and raising these children for the Lord. Much love Patti! Thank you for sharing.

Rose said...

Tears, just plain tears. Hit me hard and deep, made me curl up in a ball and face what I feel whether I'm awake or dreaming. The times I cry inside as I go over and over what else I could be doing to make a difference. I still grieve. So thankyou. Because you perfectly voiced what is hidden inside. And it reminded me that someone really, truly,honestly, from the heart gets it! I can cry tonight, and get up tomorrow and go on. And see the amazing, talented, determined, adorable little boy that I would not trade for the world. And from a mom that has a hard time believing it when people tell me what a great mother I am........... You truly are amazing, and wonderful and only a perfect Lily could blessed with you.

DeAnn said...

Thank you so much for writing this, I know it took so much courage to hit publish. (((HUGS))) Though I've never dreamed of Sarah with out Down syndrome, I can completely relate to everything you posted. It's as if you peeked into my heart and ripped out all these feelings that I didn't even want to admit I had, because I try so hard to be so strong, encouraging and positive, not just for Sarah, but for my whole family. It was such a huge relief, and blessing, to see my feelings typed out in the words of another mama. A mama who truly "get's it". This is why you have been one of my heroes for so long. <3 I've read your blog for close to 2 years. It was one of the first blogs I found about raising a child with Ds, just hours after Sarah was born. It was the first place I read the poem "Welcome to Holland", which comforted me, and challenged me at the same time, because, baby we are going to make it to Italy one day! Thank you so much for your honesty, and your courage to express it. <3

I hope you don't mind, but I shared this blog post on my Facebook, and shared some of your comments in my status (though at 3 am I was bleary eyed and forgot to include quotation marks) :-/

Dina Matchinsky said...

Seriously beautiful, I feel like I never do enough, I could always do more, and tonight you made me feel like loving him is just enough!!! LOVE IT!

Mom to Max said...

Great post! I totally get you because these are the feelings I fight with everyday and I wonder if I always will. Thanks for the good cry and if you don't mind I might mention this on my blog so people can come read.

Patti said...

thank you all so much for the feedback..it means so much to me:) I do believe that dream is a window into what Lily will be like in Heaven as well.
and Melissa, of course I don't mind:) oxox

Campbell said...

Patti, I was introduced to your blog from my friend (and your friend, Stephanie)right after our Ella(4 month old now)was diagnosed with Down Syndrome. I knew about that instantly when I met her, but the test result came back about 10 days later. I don't know how to describe my tears now, I have been struggling with this too. Very secretly. Ella is growing well and beautiful and steals my heart, but I do, I do imagine her how she would be without Down Syndrome. Last night, I was reading something from Photography and Design blog and saw a picture of baby girl. I stopped breathing for that moment because somehow I couldn't take my eyes off her. I started into the computer screen and finally realized where my intense feeling was coming from. She looked like my Ella without Down Syndrome. I couldn't even share my thought and feelings at the moment with my husband. I felt shameful and superficial, I just cried inside. Today, I read your post and can't stop crying. Thank you for sharing this beautiful post.

sally carter said...

Love. Lump in the throat. You are not alone!

Rochelle said...

Beautiful post, as always.

Leah said...

I'm sitting by my girlie's bed in the ICU, finally shedding the tears I've been holding in for days of worry and stress and fear. Knowing that she is here in large part because of the special challenges that Ds poses makes this feel so raw and so poignant. Thank you for so beautifully saying the words to express the feelings of what so many of us feel at times. Even if I haven't had your dream, I share so much of this. Thank you.

Anonymous said...

This is one of the most beautiful things I have read. Tears. We all have " special needs ." Its just that some are more visible than others. Lily is a gift send down for us. We are the lucky ones, because from them we learn more compassion, wisdom, and their greatest gift: unconditional love. Lily shows us how to love one another. And your dream? This is the Lily to come. Not in this earthly phase. But the next. But, for now, you will learn from her more than you can ever teach her. You are an exceptional mother and a daughter of God. just like Lily. Thank you for your post and the beautiful pictures of Lily!

Lisa said...

Absolutely beautiful. Thank you for being brave enough to say out loud what so many of us sometimes think about in the secrecy of our own minds and hearts.

Katie Driscoll said...

Perfectly said! and perfectly understood! I am here with you. I feel the same way....I too have a beautiful daughter #6 in our family that also has that little something extra. I too question if I am strong enough for this job. I just wrote a post on my blog talking specifically about these worries.
Some one responded to me and told me to remember that God is in all her tomorrows and for some reason it gave me peace today. Putting it in his hands helps a little but there are days like this week where the questions and worries are there front and center. You have a beautiful family! Thank you for sharing your feelings! Katie 5boysand1girlmake6.blogspot.com

Meriah said...

That's pretty intense, Patti. I believe strongly in the power of dreams and of course in the permanence of the soul. That the soul is who we are, who we ever were, all that we will be and are. Lily's soul doesn't have Ds. Her soul is perfect, as all of ours are - she is experiencing this life in a different way, one that was chosen, one that was wanted. Her soul - ever perfect, ever pure - is not limited by chromosome counts in the way that her body is, and perhaps that's what is speaking to you in the dreams? Her soul? That you have this deep connection with her and speak soul-to-soul when you are asleep, as you are also not limited by your own body when you sleep. It's the only time any of us can ever be truly free.

Anonymous said...

My son has spina bifida. I love him exactly as he is. My heart aches over the fact that most of the world will never see him as the person he is. They will mainly see the disability.

I would think any parent of a child with special needs has those dreams. I dream of my son running down the street with the other boys his age skateboard in hand.


Stacie

Anonymous said...

Whoa, what a wonderfully honest and courageous post! I have had those thoughts before and felt so guilty--as if I was diminishing Jarrett--I would never wish away his sweet personality or even his Ds--just his struggles. I wish that for once something came easy to him. I think the audience you were targeting totally gets this post. Kudos! Loved seeing the pics of precious Lily! She has such a sunshiny smile! :) I'm posting as Anonymous but I'm Jill from SC. My son Jarrett is 23 months old...

Wren said...

Patti, I'm speechless....this was so heart felt and made me cry through the entire post! I've never had that dream but I do sometimes (ok often) wish that Sutter would talk and interact like a typical child - it really is the only part of Ds I still struggle with! I want the words and so does he; to say it's frustrating for me is only a fraction of the frustration I see in his face on a daily basis and it breaks my heart!

Thank you for sharing this beautiful letter and your beautiful little girl!!!

soha said...

like always it is so beautiful and touching.
When Aseman (my DS girl) was alive I had a repeated dream that she could speak very well while she was just 3 month and in my dream I say to people Oh see! she is my Aseman, she is a special girl who can speak when she is 3 month! but now after her death I never dream her and I really miss her

Liz said...

Great post! I totally get it. I have 7 kids and all 7 have some special needs. We have 2 with Ds -one also named Lily :), 3 with autism, 1 with ADHD and 1 with Hemihypertrophy (google it :) ). I call my oldest with ADHD and my daughter with Hemihypertrophy my "typical" two. But as I watch my kids struggle daily to fit in with their peers, to speak well or clearly, try to make friends, succeed in school and just make eye contact, I often have fleeting thoughts of "Wouldn't it be wonderful if..." She could speak in sentences, He could become organized and get passing grades, She could speak clearly so everyone would understand her, He could have real friends, She could walk long distances, He would stop spinning and just play with toys, He could answer a simple question or She could tell me about her day at school. Not surprisingly, I seem to mostly have these thoughts after we spend time with other "typical" children. I absolutely adore my kids and their uniqueness. I also don't wish to change or cure them. I just hate seeing them struggle every.freaking.day.

Amy said...

I may be on the totally wrong page here, but when I read this post- I didn't interpret the dream as Lily not having DS... I read it as she had clear speech which is only one delay associated with DS. I have seen your previous concerns regarding speech and am wondering if it is this one facet that you are either consciously or subconsciously hung up on? I too have very strong worries regarding Evan's speech since he has no words yet at 27 months. But I try to listen to his therapists about his great progress and hold faith that it will come. It's still hard though, and I too dream of the day when he is able to clearly express his thoughts verbally. My apologies if I'm way off in left field! xoxo

Ruby's Mom said...

Patti,this is a beautiful post.Just yesterday I was noticing how much my Ruby looks like her 10 year old sister Catherine and I thought,'If she just didn't have Down syndrome.' I'm like you I would never change Ruby but sometimes I dream.Hugs to you.

Aurora Flores said...

What a beautiful post. So honest and full of love. Lily is perfect, but I know that I don't need to remind you because you already know that.

You two were made for each other.. Your an amazing mom.

Michelle said...

my daughter Ciarra is 13, with Down syndrome. and your feelings are perfectly normal. someone asked me once when she was tiny if I would change it. I said no. I think the answer today would be different, honestly. For HER? ide change it. she knows what "normal" is and she craves it. and yet, yesterday when asked what the best thing about her was, she said "I have DS". She is ok with it, and I am ok with it. But those feelings of wanting life to be easier for HER get stronger. and I am blessed, she talks a blue streak. Someone above said maybe this is more about speech than it is about DS. I think that may be true. I would strongly encourage you to check out Communicating partners, Dr Jim McDonalds group. He has a fabulous book called Play To Talk, and a yahoo group I swear taught ME how to talk to Ciarra. Communication is so big for a momma and her babies. I hope you understand, I love my daughter more than life, and Im completely fine with teh DS. but she wants what she wants, and it is hard to know the DS stops some of it. Teenagers want to go hang out with friends at the mall, learn to drive, get married and have babies. when she tells me all of these things shes thinking about, it is hard to nod and smile and say "we'll see" when I really really wonder what IS possible. I want to give her the world, and all I can give her is enough.

cathy said...

i do GET it & understand, my dear friend
as I did last year, too

xoxo
cathy

Nina said...

Totally makes sense; we couldn't love our children any more, are so grateful for them but it is tough to see them struggle, endure health challenges, etc. I don't mind the DS in itself, it's the extreme challenges that the child has to endure that are "edgy", not for our sake but for theirs'. thank you, again, for your honesty and depth.

Sonya said...

Thanks for posting. I don't have dreams but I struggle with this too. Especially in my faith. Is DS God's will? Would she be healed? If my husband had Alzheimers (which they say is adult onset Ds) I would pray for God to heal him. Thus far, my daughter is only 5 months, I just pray that our lives will glorify HIM. She is SO cute now but I have concerns about the future too. And, of course my BF has a daughter 4 days older than mine so I always compare and sometimes in private, it hurts to know she is behind and has to work extra hard.

C, A, and girls said...

I have to admit-I chose this path. Our daughter is 18 months-adopted from Ukraine at 12 months. And, even though I know that our daughter is the one for us, even though I know God chose her for us, and even though I chose her BECAUSE of her down syndrome and the life that meant she would have if she stayed in Ukraine, I really expect that she will outgrow this. She is behind from being in an orphanage, but I can often convince myself that if she had been home all that time, she would be typically developing. When I wonder about what my girls will be like, I assume she'll have a family and go to college if she wants. She's so small now that it's hard to imagine that she might not do those things. I see bigger kids with down syndrome and I cringe-I feel in my heart that my baby must be different than all of them, but I know in my head that it is likely her reality, and I try to remind myself that I knew this and it is ok. When the doctor told me today that I should be glad that she is using a dozen words and about eight other signs, and that is great for someone her age...I felt a rage. Sometimes it's hard to work out of I'm fighting to get her whatever help I can or fighting that idea inside that wants her to outgrow her syndrome. It's something I guess I need to sit quietly and work out with God, because your post really hit me in the heart.