Wednesday, October 27, 2010

Before I lose my nerve..

Dearest Lily,

I realize I've already posted for today...I'm posting this before I lose the nerve and delete it.

I've spent the month of October blogging every day for "31 for 21" to raise awareness for Down syndrome. I have so enjoyed reading other mommys' blogs during this month. And it seems to me that at the beginning of the month some of us were a little hesitant to write about our true feelings...but as the days moved on, we began loosening up and feeling more comfortable in our "advocate" rolls...and being truer in our blogging.

This doesn't mean we weren't honest before. But I think we all weigh what we say on our blogs because they are public, and we don't want to ...

a) offend any friends or family who read our honesty and then realize maybe things have been said to us that were unintentionally hurtful.

b)scare off other mamas who might be facing a ds diagnosis and are coming here to "see what it's like". God forbid I would ever be the reason for someone choosing to terminate a pregnancy because they see my grief and think, "I can't handle that."

c) appear bitter. Because some of the things I feel.. look a whole lot like bitterness to those who have never walked this way. And maybe...partly....they might be. But that doesn't mean I don't recognize my feelings and desire to change. It just means I'm still in the process of wading through this Down syndrome thing- the emotions, the realizations, etc. and I'm not going to do it all perfectly. I'm human. And sometimes I really struggle to allow others to see me as such.

e) and finally...maybe some mamas are like me in that- we struggle to be real in our grief.

Grief is a process, and for a lot of us that process isn't really totally over yet. Acknowledging we're grieving can be misconstrued as self-pity. OR it can solicit pity from well meaning readers...which is the last thing we want. And we certainly don't want people telling us to count our blessings or just love our babies- because the truth of the matter is our children and our love for them are the whole reason we are grieving. If I didn't love you so much, Lily, I wouldn't grieve the fact that you are going to struggle in life. And face rejection at times. And have a disadvantage in life. That has ABSOLUTELY NOTHING to do with the fact that I am completely 100% head-over-heels in love with you, and consider you to be my greatest blessing in life!


SOOOOOO, what I am about to say may appear to some readers to be self-pity. or bitterness. or discontentment. I assure you, Lily- it is not. It is the struggling-through-but-I-will-overcome-these-feelings kind of writing that is therapeutic for me, and I'm putting it out there in the hopes that it helps other Mamas of babies and children with ds to feel...normal.

(and thank you, Deanna and Jenny, for being so real on your blogs and inspiring this post.)

I have learned since having you, that I really struggle with being sensitive. Really struggle.


A relative comes to visit and doesn't ask to hold you, or ask about you, or pay attention to you. I it because you have Down syndrome?

A relative comes to town and does pay attention to you and asks "How is she doing?" and I it because you have Down syndrome? Would they normally ask that question...that way?

Someone comments on how tiny you are and I say yes, it is related to Down syndrome. They say "Ooooh" in a sad way...and I think...should I have told them she had Down syndrome? Or just said yes, she's tiny.

I see other babies your age doing so much more...even today, Mackenzie is babysitting a baby younger than you in our home...and I have to fight an urge to ignore that baby. I don't like comparing, but my brain is going there again and again and I hate that I feel this ...anger...towards other babies. I hate it.


I take you shopping or to the doctor or to a pumpkin patch...people stare at you and smile, and I wonder...are they noticing you have Down syndrome? Are they smiling because you're so sweet, or is it out of pity?

Again, someone - a stranger- asks me if you were premature, because of your size. I hesitate, say "a little premature", finally offer the answer: Down syndrome. "Oh, I could tell," they say proudly. And I want to end the conversation there.

An older woman at the hospital comments on how beautiful you are, how alert, etc. She keeps asking about your size, until finally I smile and say confidently, "Yes, she has Down syndrome." The woman says "Oh." And goes back to reading her magazine. The same scene repeats itself several the waiting room at the Audiologist, at a restaurant, the doctor's office. Always with the older generation- the ones who were used to seeing babies like you put away in institutions or separate classrooms. I find myself leery of telling any more people from that generation about your diagnosis.

I hear about a potential ds diagnosis on an ultrasound for someone else...hear how relieved everybody was that the baby was "totally perfect." And later I bemoan the fact that I wasn't strong enough to tell the story-teller, "We think Lily is perfect too." I'm mad at that person, even more angry at myself. I tell my husband- why didn't you say something? He says he didn't even feel hurt by the words...and I fight resentment at his lack of my shared sensitivity.

I told you my feelings might appear less-than-saintly, Lily.

And so what do I do? Bitterness and envy and hatred and resentment and unforgiveness are loads too hard to bear. I can't hold onto them and walk this road we're on together. There are too many other things to carry.

Daddy tells me to look at it this way: I have emotional cash. And there is only so much in my account. I can't spend it all- I'll come up hurt and empty every time. I need to be careful what I give my mind to- what I let penetrate my heart. When those feelings of hurt and anger and ugliness creep in- when I want to isolate and shelter you and hole up in our safe little home, never to face the unintentional or intentional...jabs from strangers- or even loved ones- again...I need to stop.


I need to move on, realize that maybe I didn't see things right, maybe they didn't mean things that way, maybe....

Maybe I just need to quit being so oversensitive.

Life's too short.

You need a Mama who has "the heart of a child and the hide of a rhinoceros." I want to be sensitive to others, but not overly sensitive myself. I want to quit being thin-skinned.

And truthfully, Lily- I can't do this on my own. It's such a part of who I am, and old habits are hard to break. I need God's help. Desperately.


So I am praying. And checking my heart. Daily.

And maybe it's all part of God's big royal plan in giving me you. Because you know what? These are good life lessons for me in every area. People would say things that hurt my feelings even if I didn't have a baby with Down syndrome. And I need to grow and change and toughen up a little. And realize that people are flawed and human ... just like me.

So you see why writing is therapeutic, Lily? I just blogged my way right through that little...okay huge...bump in the road.


We're gonna be fine, baby girl.

Just fine.

Love always,

Mama oxox


Mom to Max said...

I love this blog's exactly how I feel. Sometimes I hesitate to blog my real feelings...but we need to. That's how we help each other...because we all struggle. We'd be lying if we said we didn't. Thank you for being honest. I don't feel so guilty now for feeling the same way.

Jenn W said...

loved this post!
but now i'm thinking about my actions. i would never want to make someone feel the way you do in certain situations.
I smile at people who have all disabilities but i really have a heart for children with Down syndrome, so maybe i smile at them a little longer...i can only hope that their parents dont see me and think i'm staring out of pity.

sometimes i can see both sides and find myself wondering... should i smile at them, if i smile do they think i'm showing pity for them because they have a disability? should i not smile and not make eye contact- if i dont smile will they think i'm ignoring them and avoiding them based on their disability.
it's hard.

Sarah said...

So many great "one liners" in here of wisdom. I too am sensitive so I can relate in that way, but can't in others so I won't pretend. Maybe you could blog and share one day what you would want the person to say when you say your child has DS. just so you know, I stop back by here I just think Lily is precious, and I love hearing/watching how your kids love on each other and seeing the way you mother them all.

Ashley said...

Thank you for being honest, Patti. I'm sorry that you feel this way
:( We have gotten the "looks" and pity things at the stores, etc. It's hard but it's something that you need to pray about. Pray that the world changes their view on Down syndrome and that it will be viewed as "normal" to this world. ((Hugs)) Love you!

Mrs. K said...

MMM let me see...from whom did you ever inherit your thin skin? ;>)

Honestly Patti, I do not see what all the fuss is about ds. Lily is Lily, she is another sweet, cute, adorable, cuddly RICE. I was so much more concerned about Lily's heart than anything else. My heart was in my throat the day of Lily's birth and all the while you, Sam and Lils were in Portland. I prayed so much during that time, I would have given my heart to Lily and gladly gone "home." Lily will be just fine, she has no choice, she is in a great loving family.

You are only human in your thoughts, fears, anger, etc. Do not dwell on what others may say or not say. They are not walking in your shoes so they do not feel the pain. People can be so thoughtless, and not just my generation. :>(

Next time someone mentions how small she is tell the either "good things come in small packages" and leave it at that or "yes, she is but after all she is a baby."

I can remember when you were an infant and had to have a caste on your right foot because it was turned in. Some "old" lady gave me a look as if to say "what did you do to her?" but instead she asked what happened and I said "oh I dropped her." I gave the same flipant answer to someone else when they inquired about Hope being in a body cast. Oh, I could be do defensive!! I guess it was naughty of me but I too felt hurt when people looked and either looked away or gave me a anger stare.

Sorry, I went on and on. Please don't post this I just wanted you to know I understand.

Love you so much, MOM

Lisa said...

Love this. Thank you so so SO much for writing this.

Cathy said...

Great post. It's wonderful that you were able to write it all down and start to work through it.

Thanks for sharing your heart. It's important for moms with a new diagnosis to know that their feelings are "normal".

Anonymous said...

Thank you so much for your honesty. I go in tomorrow night to be induced with our daughter who has Ds, and I've had these thoughts in my head and can't stop wondering about how life is about to change for us. Most of me is trying to be positive, but there are still some questions about how Ds will now play a roll in our everyday lives. This is one of my favorite and most reassuring posts on being a parent of a child with Ds that I've read yet. Thank you for giving me peace with feeling this way, too. :)

patsy said...

i too have to try and not let it bother me if i say to someone new something about maggie's ds and i get the awww or the i'm so sorry...but i honestly feel sorry for them. because they do not know. they do not know the love that oozes from our sweet girls. the way their eyes are a window straight to heaven. the way that i have witnessed miss maggie change our family for the better. i admit before we had maggie i might have been someone that thought awww...better them than me. but now i know better..we know what others do not know. i feel so blessed to be right here, where we are. and we may have to get a thicker skin to get through what is to come but when i look at my sweet maggie's face it just all seems to go away. and i do have fears about her future but we will just pray and take it one day at a time and enjoy each magic-filled day...because i am not sure how but that is what miss maggie has brought with her. magic. and when i watch your videos of lily i too can see her magic...and it makes me want to say 'i am so sorry' to those who do not get to know what we know.

JC said...

This was so beautiful Patti, so many of the things you wrote in here are what I feel daily. I too am finding I am oversensitive and maybe a little paraniod when it comes to Russell and what others are thinking.
The words your husband said to you really touched me and made me think. Thank you for posting this, it is always nice to hear what other Moms really feel. I am so glad to have you guys as friends :)

Patti said...

Sarah and Jenn- you are both too kind. I'm quite sure if I met you in "real life" you wouldn't even know how to hurt my feelings:)

I used those two opposite examples of relatives visiting to try(maybe unsuccessfully) to illustrate that sometimes it doesn't matter HOW people react- I am being so oversensitive that either way I am questioning their reaction.

What do I think people could say when I tell them she has ds.. maybe: "Oh, well she is such a sweetie!" or something like that:) It's so much easier now that I have Lily for ME to know what to say- cuz I get to say things like "Oh, how cool! You have a baby just like my Lily!" ;)

And also-I don't think there is anything wrong with smiling at someone who has ds- I was just writing that to explain what has been wrong with MY heart!

Thank you both for always leaving such thoughtful comments here- hugs to both of you.

Mom- I posted your comments anyway, cuz they were so sweet;)

Anonymous- your comments had me in tears. You are exactly who I posted this for...every anonymous Mama out there who is reading and wants to feel normal. And let me just say: Congratulations!! You are about to embark on the greatest and most precious adventure. Give that beautiful baby girl a kiss tomorrow night just from me. ox

Unknown said...

Amen, amen, amen. I'm going to have to link to this post, if you don't mind. Either that or just rewrite it word-for-word. ;-) OK, not word-for-word... I'd have to change "Lily" to "Roo", but everything else is pretty much right on. :-) Thanks, Patti.

Anonymous said...

I feel 100% every one of your thoughts, everyday. Thank you for your honesty. Your words did not anger or upset me they were enlightening and reassuring.

I am coming to know that God put us in each situation in our life to reveal what lies within us, to dig deep and evaluate our life and to run to him harder than ever before. As we pursue sanctification with Christ we are so humbled before him.

This journey has me running hard towards Jesus. At the end of the day when all is said and done, when the looks have looked elsewhere, the opinions and statements drifted away... It's Jesus, Me and Grady and it's a pure and beautiful thing.

I love reading about LILY, post on friend!

TheFoleyFive said...

Patti..i loved this so much. this post makes one thing so are a mama who fiercely loves her baby. fiercely. My one worry I've ever had about having a child with down syndrome or any other syndrome is that I would be so incredibly passionate and defensive about protecting them. Its what good mothers would do. I'll be praying, bcuz I can't imagine trying to get that tough skin...but I love what Sam told you..and your mother, what sweet kind you and your blog and dearest darling lily as always..

nicole said...

It is so heart-warming to see a mother so in love with her family and especially her little Lily. And you're right, that love is exactly why you grieve. I just have to say, there is peace, contentment, joy, and love written all over your childrens' faces. I haven't followed your blog very long, but I can tell you are the kind of mother I work toward being.

TheFoleyFive said...

Patti! bonjour! si heureux d'obtenir un commentaire belle français. fait ma journée. merci madame!!! bisous bisous!

Elissa said...

Patti- Absolutely beautiful and brave post. I have felt many of these ways many times. Other times, I just don't care what people say or think. I have noticed a variance of reactions to Abbie's DS and again, sometimes I am very sensitive to it and again other days it just doesn't bother me. I'm not sure what that says about me, but I want you to know how much I appreciate this post and your honesty. You are right. If we are not honest we don't help anyone. Would you mind if I repost your post on my blog or at least refer to it in a post?

Patti said...

Sure Elissa, thanks for your kind words:)

Elisabeth said...

What a wonderful post! I feel like you took the words right out of my mouth. As I was crying on the way home from a play group today feeling many of these things, I was reminded again of my desperate need for the Lord's help. I want to give people the benefit of the doubt and show them the same grace that the Lord has shown me.

Tara said...

Honesty is always beautiful. We have so far to go, don't we? I know Eon's only 21 mos-old, but I think it has helped me tremendously that, as he gets older, it is more apparent to strangers that he has Ds. It takes the wonder of "should I say something? Do they know?" out of the equation. I can just show them by example how to love him.

I do find myself plastering on a fake smile at times when he's being ornery. I need people to know that I ENJOY him, even if I'm really not enjoying him in that instant, kwim?

Virginia Revoir said...

Thank you so much for posting this. I think people, including myself, just don't really understand and/or even know how to act. Now that you wrote this, it makes me wonder about how I've responded in situations like this in the past. Thank you for pointing some things out.

Chaz has Asperger Syndrome and because you can not tell from the outside, people constantly question me on whether or not is is Asperger. I even had a friend tell me he just had demons. That hurt. It took many years for family and friends around me to see it. But I do understand how people's words can hurt even if they don't mean it to come out that way.

Mary said...

Great post. You know, my daughter, Leah, will be 4 in January and I still have these questions run through my head on occasion. Some days, less often now than two years ago, I find myself comparing her to my friends' children who are younger yet more advanced in various areas of development. It can be really tough and hard to shake off. I forget where I was going with this, but the fact is we love her. With love comes grieving. You hit the nail on the head.

Lauren said...

I wanted to comment on why I personally smile when I see a baby with down syndrome.

It's because my mom's cousin has Down Syndrome and she was always my favorite person at our family reunions. Ever since I was a little girl I've wanted to have a child with Down Syndrome. So far, God hasn't blessed me in this way, but I guess I have a "soft spot" in my heart for children with Down Syndrome.

When I see a little one with DS it makes me smile because I remember being a little girl, splashing around in my great-aunts pool with my mom's cousin. Obviously every child is unique and has their own unique personality, but I've always felt that that extra chromosome really is a bit magical. So trust me, it's not pitty!

I never know what to say to the parents though. Usually I say that they have a beautiful baby, because I think that pretty much sums it up.

Anyway, I just thought you'd like to know. (Oh, and by the way you have a VERY beautiful baby. Seriously, not just saying this, she's one of the cutest I've ever seen!)

Melissa said...

I love this post, and am so glad you were brave and put your thoughts out there for all of us to read.

There are days I wonder what people think. We were in at the Drs office the other day and saw a different nurse than usual. Claire was her usually charming self, just full of smiles. At one point the nurse said something about her being smart. And I know, without a doubt, she is a smart girl! But it got me wondering, does she know she has Ds? Would she have said she was smart if she knew? Or does she know, and still think she's smart? Who knows...