Wednesday, April 19, 2017

take heart, self

When Lily was a baby I wrote a blogpost called "Enough", detailing a recurring dream I'd had. It was a soul-bearing kind of a post, and in all honesty I've kind of steered away from those over the past few years. 

I'm grateful - yes grateful - for the opportunity to raise two little girls with Down syndrome. So I don't want anything I say here to be misconstrued or misunderstood because I'm honest about their challenges and mine.

But some posts - like this one or this one  or this one- are therapeutic for me. They're not written to solicit pity or praise; they are mainly just a "word of encouragement" to myself: take heart, self. It's going to be alright.  

So today I went back to reread those posts, and even though I'm cringing just a little bit at the thought of writing a similar one.. I'm doing it anyway. 

Because I need a "take heart, self" moment here. And maybe someone out there does as well. 

After Lily was born, and the words "Down syndrome"  became part of the common vernacular in our home, I spent the first year on a roller coaster of emotions. And I would say that the majority of those emotions were good ones…because for the most part, parenting a child with special needs is just like the first year of parenting in general - there were good days and bad days. Days when I felt like I was adjusting to what it meant to be a mom, and days when things felt out of my control.

But the difference between that first year with my first baby, and that first year with Lily, was this : when the dip on the roller coaster of special needs came, it was huge. Like Space Mountain versus the kiddy roller coaster in Toon Town, huge. And it wasn't a dip, it was a plunge. A mind- numbing, shell-shocking, out-of-nowhere plunge into darkness, and it wasn't ever "fun"; it was pure hell. 

I've never liked roller coasters in real life, and I hate them in my emotions even more. 

And almost every time that dreadful plunge came, it was because of comparison. 

You know that saying  – "comparison is the thief of joy"? It becomes incredibly real when you're the parent of a child with special needs. 

Because you don't just compare your child to typical children… you compare them to all the other children with their syndrome. At least for me that has been true . 

So I said all of that to say this : it's been a long, long time since the comparison bus hit. Maybe five years. But when it hits.. and the other day it hit .. it hits hard. And it only takes a moment for the downward spiral to begin. Just one little trigger ... reading about another child with Down syndrome, Lily's age, conveying abstract emotions in concrete terms... and that wicked bus knocks me down.

And the thing that hurts the most is not the fact that she has Down syndrome - but the horrible introspection that comes after the bus hits.

And it goes something like this..

Have I done enough ?

Would my girls be better off if I were doing more?

 Is there something I'm doing wrong?

 Have I failed them somehow?

Am I missing something?

How much of "who they are" is because of their genetic make-up  -- and how much is because of me?

And this is where I have to stop the bus.

Don't get me wrong - there is a place for healthy introspection. There is a time for asking questions and making sure we aren't missing avenues of help for our children. And I'm never opposed to looking for new resources or bouncing ideas off other parents or educators as far as giving my girls the tools they need to learn. 

But then there is the bus.

And when I'm knocked down by the bus, all careful and healthy and honest introspection is replaced by an infinite number of what-ifs.

There is no room for a truthful assessment of "how" my girls are doing, because I'm drowning in the the sea of comparison. 

It doesn't matter what Lily can do - just did today ! - because the comparison bus just robbed me of that joy.

I was thrilled yesterday that she got herself dressed for church, folded her play clothes and put them away, told me "I love you" and tried to write her name. But those proud mom moments - held up in the light of another child's accomplishments - are crushed under the weight of comparison. 

she picked out the entire outfit herself and came downstairs ready to go. "Mama, Lily dressed... ME!"

And here's where my "take heart, self" speech comes in. 

Patti: take heart. 

Stop the bus. 

Pick yourself up. 

Stop the what-ifs. 

Because at the end of the day, what I'm left with is this: God gave me my children - those with special needs and those without - and He also gave them me. 

If my children's futures are completely in my hands ... if everything they are going to be is left up to me, and what I can or can't do for them ... then we are already sunk.

Because truthfully I'm always going to fall short somewhere. Truthfully, there are always going to be things I miss, areas where I could be doing better. 

That's true as a mommy to Lily and Madison, and that's true for my other ten children as well. I didn't suddenly become a perfect mom when my daughters with designer genes were placed in my arms. I wasn't instantly, miraculously infused with the wisdom of the ages – and they didn't come with a blueprint for life either. 

How many times as parents have we wished that all of our children came with special instruction manuals, handwritten by God? But as much as I wish I could be the perfect mommy, always knowing exactly what it is my children need to succeed in life ... at the end of the day who they are left with - is me. 

All of my children have strengths and weaknesses, special needs or not. And no two of them are the same. I have twelve children who excel in different areas - some sing, some don't, some love math, some hate it with a passion, some are bookworms, and some struggle just to read. Some of my children are masters at keeping their rooms clean, and some can hardly remember to make their beds. We have artists in our family, musicians, scholars, inventors, comedians and creative geniuses alike - they all arrived with distinct personalities and passions, hardwired by their Creator... not me. 

And just as I can't take full credit for their strengths, I can't take all the blame for their struggles either. I'm the same mom to all of them, and yet somehow ... they are all unique. 

And so this game - of comparing one child to another - is really like another old saying, you know ? It's like comparing apples to oranges. I place such an unnecessary burden on myself when I expect a different result. If I can't compare Noah or Jackson to other children their age… with the same amount of chromosomes.... why would I do that for Lily and Madison ? If the comparison game is an effort in futility for any of my children ... then it's even more so for my daughters with designer genes. 

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

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

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

... enough.


Elizabeth said...

Just <3.

Cindy said...

You've spoken the truth. I just had this conversation (with myself) the other day. The Lord had a very good reason for making me their mom. I'm not perfect, but I'm exactly what they needed. Great job for stopping that bus!

Dawnalouba said...

Absolutely LOVE this!!!

Thank you for speaking truth and wisdom to us.

all10popes said...

So needed to be reminded of this today. :)

Mo said...

You made me tear up today. Love and needed this. Thank you!

Amy said...

I have followed you family's journey from afar for a while now. All of your posts are great. Somehow, this post aligned with my day in the best way. I didn't know it, but I needed this re-affirmation that we are the people that God planned for us to be. I have a nine year old daughter with special needs (& an extra special need that has recently popped up called SASSY!) and a six year old son that excels in everything he does. There are those moments that it's hard not to compare her to her peers. When I realize I'm doing it, I feel awful and guilty. Then she does something that is new or that she is so proud of herself for and my heart hurts (in a good way). I believe that's God's little reminder that she is who she is and in that is perfect. Thank you so much for sharing your world.

Patti said...

Thank you for taking the time to comment, Amy. I'm so glad something I have gone through is able to minister to someone else as well . Xo Patti

Patti said...

It helps to know a seasoned mom like you goes through the same things . :)

TheFoleyFive said...

oh man...I so needed this today. Thank you for your heart. That really IS the comfort isn't it? That all our children need is...US. And then God does the rest. motherhood is so fraught with unknowns and a sense of inadequacy... sometimes I feel crushed by the enormous weight of it. And then, I read words like this. Thank you x a million

Sheila said...

You have such a wonderful way with words and ideas.
I really struggle with comparisons. Even as I read this, I kept wanting to know how old you girls are, just because I wonder about them COMPARED to my girl. Silly.

You are doing the most important thing, loving them.


Ann Ehlert said...

I just went to my daughters move up meeting. I've been struggling because I hear all these things about how inclusion is best but when I see my daughters behaviors there are many reasons why I believe a self-contained classroom works better for her. When she was first born I kind of hoped she'd be the smartest kid with Down syndrome and she is super smart but needs a lot of redirection. I feel good about her placement but then I run into other moms whose concern is what teacher they will get and I become sad. I wanted my three girls at the same school but if I look at each child separately I know different schools is best.

I didn't mean to go on like that. Just always grateful that even great moms wonder if they are doing it right. Thanks. :)

alamama said...

As a parent of two special needs children, I completely get hit with the comparison bus from time to time. Our 4yo son has delayed speech. While he's come SOOO far when I hear a child younger than him talking better, it hits. There are other times as well. And I just have to stop and thank God for how far he/they has come. Only Hubby and I know how far our kids have come, know what they have been through and overcome just to get where they are today. Looking at the smiles on your kids, the love in your families' eyes, you are doing enough momma!

Mariah said...

Patti, this is so beautiful! You and your family have been very much in my heart since I heard about Madison in the hospital...well...not true exactly because your family is never far from my mind (our connection through Monique, through our friendship with Joe and Heather, through so many ways but mostly because we are family in Jesus!). You have been much more in the forefront of my mind since you've been in the hospital with your baby Bunny. Just want to tell you that my prayers and thoughts are very much with you, especially right now, and I want to thank you that you are unafraid to open your heart in such a way was you do here and on your Instagram. Lots of love and hugs and prayer for you from me!

Unknown said...

God bless you for your honesty! God used it so much! Thank you 😃

Nicole said...

How do you not age, Lady? You are the best! Love stopping in to catch up on your family. Texted a couple times, but maybe your number has changed.

Unknown said...

Thankyou for this, I really needed to hear it. I am a fostermum. My daughter came into our lives when she was 6 months old, that was 14 years ago. I feel huge pressure to be a "perfect" mum because I have been trusted to raise another womans child. I have to constantly remind myself that before she was a biological daughter or our daughter she was a daughter of God & He believes in me, He has entrusted her to me & He knows I'm not perfect but knows I am constantly trying to be the best me & the best mum I can be for her

My name is Sarah said...

Ahh Patti, This is Joyce. Golly it seems like it has been years since I typed that. Even longer since I've taken the time to read blogs. Yet here I sit in a hotel room in St. Louis with my favorite girl (woman, she's soon to be 28) and time. You are such a beautiful woman and mother. But that bus. It gets us all from time to time. I think lately even more so because it is so easy with social media to see what others are doing. It's so hard at times. I at times want for Sarah what I see others have. I want to help her plan an over the top vintage farmhouse wedding, but she hates boys. I want to see her go to college. She has no interest. I want to see her live in an apartment on her own. She is adamant she wants no part in that. I have shed tears over these things because somehow I have been lead to think that is what is expected today and anything less is just that less. And that falls on me as the mother. But then I recognize that she has so many other things. She is an extremely thoughtful caregiver to her grandpa and has helped him tremendously while he grieves for his wife of nearly sixty years. She is a business owner. A leader in a national sewing program making pillowcases in memory of her friend Kristen for sick kiddos and she is soon to be moving into a our new home with a separate independent living suite just for her and her little dog Jackson that she takes wonderful care of. A long winded response to say, I hear you, I understand and I just want you to know you are perfect just that way you are and so are your girls!

MRS MJW said...

Too true. Fear is the antithesis of faith .