Tuesday, February 26, 2013

real life

Saturday night I wrote a post that was a little bit difficult to write. Actually it wasn't difficult at all- because the words were flowing out of my brain almost faster than my fingers could type. What was difficult was hitting publish. Because I don't like sounding like I'm complaining or venting when there are so many people who have it harder than I do in life. And I also don't want anyone coming here to read about life with special needs to form their opinion based on one post.

But really, that's what all of life is about, isn't it? Ups and downs, hills and valleys...not every day is a bed of roses. And that's okay. Writing about our struggles and gaining feedback from other moms going through the same things can be extremely therapeutic - and beneficial for others as well...it helps to know we're not alone. And it doesn't mean we're any less real as bloggers when we focus on the good, because that is therapy in itself as well - choosing to aim our lens on the beautiful and ignoring the mundane or the painful, and in the process maybe we gain perspective ourselves.

So I guess you could say this is an easy post for me to write. Funny pictures from a sunny afternoon... and if this were the only post you read on A Perfect Lily, you might get the idea that life with Down syndrome is a stroll in the park.

 No struggles recorded here, no tears or fears...

...Daddy is ticked that I'm posting this picture. He says he looks horrible, but I can't resist - I mean, just look at that little pixie grinning and saying "cheese' in the background. Plus, I think he looks fabulous in blue. I don't care if he has a chunk of tuna cheese melt in his cheek...he's sexy.

(See why we have ten-going-on-eleven kids?)


And some might say- so which is the real picture ? The posts that depict the struggles and sometimes very real heartache involved in raising kids with special needs ? Or the ones that are all rainbows and unicorns, where we proudly proclaim that "everyone should know the blessing of Down syndrome."

Abigail was sick. And grumpy. But look at Lily with that chubby leg slung over her other one, and the grin on her face.

Here's a revelation.... both are.

Just like the photos above - the mundane mixed with the adorable, the frowns mixed with the grins - so are our lives. So is my life. 

I remember some very wise words one of my best friends spoke into my life the night after Lily was born. I was very much in need of perspective that night, and my friend told me words I'll never forget. I was telling her about my fears for Lily's future, and in the middle of that long night, the list was endless.

My sweet friend told me that as a mother of a child with special needs she had indeed shed many tears over the years. And the same held true with her other daughters. And just as with her other children, there were moments of laughter and intense struggles and joy and fear and beauty.

It's called parenting.

We cannot escape the broad range of emotions and experiences that accompany that title of mother, once we've decided to take on this job. It comes with the territory, and we can't avoid those ups and downs no matter how hard we try.

This is life as a mom. Messy, changing, difficult, sometimes painful... but also rewarding, hilarious, joy-filled, and most of all blessed.


And you know what? I wouldn't change a thing. I'll take the mountains with the valleys, and I'll try hard to learn from both. 

It may not be a perfect life...but it's our life :)


1The Lord is my shepherd;
    I have everything I need.
He lets me rest in fields of green grass
    and leads me to quiet pools of fresh water.
He gives me new strength.
He guides me in the right paths,
    as he has promised.
Even if I go through the deepest darkness,
    I will not be afraid, Lord,
    for you are with me.
Your shepherd's rod and staff protect me.
You prepare a banquet for me,
    where all my enemies can see me;
you welcome me as an honored guest
    and fill my cup to the brim.
I know that your goodness and love will be with me all my life;
    and your house will be my home as long as I live.

Psalms 23


happigail said...

Such a wonderful post Patti. My special needs child is 13 nearly and at times, the bus doesn't just stop it crashes right on into me. When I see his friends grow beyond him and leave him behind, when he didn't utter a word until he was 6, when puberty hit with all It's strangness that most mums are shielded from, I was not... when he was 2 years 4 months and I got a report saying he had global delay of 2 years 2 months, all these things shattered my heart and left a tiny scar. But also, his compassion for animals makes my heart sing, his wit, the crazy confusing conversations we have endlessly now have me giggling long after! His success in school at his own level and his shocking beauty! Also that he has plans for his future, they are not grand, but life is about happiness and finding What ultimately makes us tick, his may just be mowing lawns! I am so proud of him. I'm proud of you, me and Lilly too.

Annie x

Deanna said...

I just love you for this post. Especially coming from a mother who has it all together who could easily post only the happy and fabulous...this is so encouraging. Thank you for being amazing and real!

lovemy3 said...

Absolutely perfect, Patti! I agree, we have to share the good and the bad, but it is just parenting. I have good and bad with my boys, too. Love, love, love the beautiful smiles of Miss Lily!

Elissa said...

Well said dear friend. It is so true. Miss you lots!

Mrs. K said...

Patti, I could not post a comment on your Saturday night blog about receiving the reports. I wanted to come up and tear into shreads those reports. You MUST always remember: God and Lily are working at the pace He wants her to work. These so called "experts" do not know Lily as you and Sam and her siblings know her. Lily is much more comfortable with all of you, and she responds naturally. With strangers, who knows what she is thinking and holding back or trying her best to "shine". I really think you need to step back and see Lily for who she is, one of God's many children, and not let those so called expert reports bother you. Take them for what they are, words on a piece of paper written by people who are trying to understand, trying to help, trying to guide, they are always on a learning curve themselves. Do not let their labels take you down. Keep expecting and not accepting and Lily will shine shine shine. Smile my Sweetie, put the wind back in your sails and go forth chin held high.

crystalkupper said...

So true. And perfect pictures to accompany your words.

goldenleaves said...

I really really needed to read this after a not so good PT eval. Thank you!

Erica said...

Patti - I just love this post. James had his 6 month evaluation last month and it just knocked me over, pulled the wind out of my sails, stole my breath, deflated my hope and left me thinking, "Here we go again. Time to pull myself back up...AGAIN." And, I was exasperated, exhausted and sick of feeling knocked down. I felt tired of looking for new pockets of hope, wisdom and strength to stand up again. And, just when I was ready to lift up (another) tear-filled prayer/rant - I was reminded that between life's heartaches, there is a lot of joy. I remembered that the bad days are not my forever. Sometimes it's because I come across a POWERFULLY written blog that alters the course of my day and week (thank you Patti). Most days it's that my world is restored for brief moments at the slightest smile from this little boy who just brings me unspeakable joy - courtesy motherhood. Beautifully written entry(ies)! Hope you and baby and family are doing well! Hooray 3rd trimester!

EN said...

Your friend echoed my thoughts exactly! Parenting every kid comes with it's challenges. I know quite a few "typical" kids/teens/adults that make parenting Leanne or Josie look like a walk in the park! And as I always say, "If you're going to place parameters upon what type of child you're willing to deem acceptable, you may want to find another vocation for your life because parenting doesn't work that way." Great post, Patti!

Unknown said...

yes the ups and downs, i always think the ups are a little higher and the downs a little lower as a parent of a child with sn, the journey has greater extremes. xxx

Tara said...

Good post, Patti! Our lives would be BORING if everything was hunkey dorey all the time. :)

cara said...

How cute are these pictures!!!! Cannot get enough of Miss Lily.

Another authentic, beautiful post. I think if we stay in today and not in tomorrow as the Lord tells us to, then everyday we are trusting in Him taking all of our thoughts captive to Him.

Love Psalm 23. My little girls are memorizing that now. God's Word is so encouraging and where our minds should remain continually. xoxo

http://mylittlehappies.blogspot.com said...

Loved this. My grandmother read this verse to me every single night I ever stayed with her growing up so it's a special one. I never knew how much I would need to use that verse and her helping me memorize it without my knowing was a blessing.