Tomorrow, she’s three.
In some ways I can hardly believe it’s already been a year since Sophie was diagnosed with autism, and in other ways I feel like I’ve felt every minute of that year. We’ve done so much growing individually and as a family this year. Much of the year has been spent learning about autism, coordinating and re-coordinating therapies, learning to navigate The System, reading books, trying strategies, even changing our diet and the household products we use. We’ve learned so much and have so much yet to learn. We’ve grown closer and stronger as a family, despite the weakness and weariness we often feel.
I mentioned a few weeks ago that you could sum up the year since Sophie’s diagnosis by saying that God is good, life can be so very hard, and love wins. Today, I want to talk a little more about what that means to us.
God is so good. Despite everything we’ve gone through this last year, we’ve seen so many small and not-so-small miracles. Things like Michael getting a scholarship to a school that wasn’t our first choice and learning just a few months later (after diagnosis) that we would have excellent coverage for autism services on our student insurance (and that we would have had ZERO coverage at our top-choice school). Things like finding a team of caring, capable therapists, including our incredible, patient, kind ABA therapist who decided to take ONE insurance-covered case and was matched with us. Things like new words, or a rare kiss, or even half a dozen flavors of coconut milk ice cream.
I’ll say it again: God is good. You may not share my belief, but I believe that there are people on earth here to show us miracles and bring light even through the darkest nights we face. That some of the brightest souls are housed in the most imperfect little bodies. I believe that Sophie is one of those people. Autism is something that affects her. It is not who she is. That’s one reason I prefer saying that she has autism to saying that she’s autistic. Autism can often be that dark night we face together when it threatens her body or halts her voice, but Sophie is a light shining through it. There are moments where I can see her looking out from behind her eyes, just quietly reminding me here I am, Mama. I’m underneath. I’m still here. Don’t give up.
Sophie is beautiful, smart, funny, capable, and adventurous. She’s determined and strong (physically and willfully). Her smile and laugh will just about do you in. Her tiny, sweet voice is enough to melt you. She can figure out how almost anything works and has one of the sharpest memories I’ve ever seen. She runs, climbs, digs, swings, and lifts almost anything. At the same time, she’s got a soft spot for all things girly and will do a whole lot of that running and climbing in a tutu. She loves pirates and robots and roughhousing and princesses and sparkles and nail polish. She’s the most relaxed when she’s in deep, warm bath water, or painting with watercolors, or swinging on the swings or in a blanket.
She’s learning to love her brother. For Milo’s first 11 months, Sophie mostly just ignored him or lashed out if he got too close. And still he loved her. He loved her and loved her and loved her until she realized she could let him. She doesn’t consider him her best friend yet by any means, but she’ll let him take turns (occasionally), encourage me to get him a blanket or binkie when he’s upset, and let him get right up next to her without a fuss. She even gave him a kiss and a hug for the first time this last week. Their relationship is going to be something incredibly special to each of them. God is good. He knew just the brother for Sophie. He knew just the sister Milo needed. He knew when the right timing was for them to meet. God is good.
Life can be so very hard. The words I chose above in reference to autism were intentional–words like “threaten” and “halt.” If you saw what I see, you’d know that much of her negative behavior is not naughtiness. Sophie lives and breathes and loves in a body that refuses to work properly for her. Her sensory system is constantly on a hair-trigger, and we maintain very tight boundaries, schedules, and routines to help keep her regulated the best we can. It breaks my heart that some things are so hard for her, like eating, or wearing certain fabrics, or being at the park with too many other children, or allowing us to hug or kiss her. There are times that I see the tension in her body building, without any ability to help her stave off the sensory overload, watching helplessly as her body is overridden with clenched fists and jaw, body trembling, or locking her joints stiffly as she fights, sobbing or screaming against her own body.
I still find myself lost when it comes to responding to the reactions others have when they learn of her diagnosis. Most people mean well, and I’m able to see that even if what they say hurts. I find that many people feel the need to fill the void that follows “Sophie has autism” with something. Often that something isn’t fully thought through, like the people who say “she doesn’t look like she’s autistic” (there is no signature set of physical characteristics associated with autism), or “I used to work with the autism kids at the middle school. Those autism kids are so funny!”, or “oh, did you do/take ____ while you were pregnant?” I never really know what to say, so I try to err on the side of smiling and moving along quickly.
Knowing that my life doesn’t fit in the same box I thought it would sometimes feels lonely. I wonder if I’m doing enough or the right things. I struggle to feel like I’m balancing things well. I daily fight for hope.
Love wins. No matter what people do or don’t say, no matter what Sophie’s body does, no matter how alone and lost and scared I feel sometimes, love wins. Love wins! For nearly every bad experience we’ve had, we’ve had at least one good one. Kind ladies who stop and help hold the cart for me while I try to corral two crying children because we NEED to get groceries. Readers, friends, and family members who send encouraging notes or leave comments. Patient therapists who endure all kinds of everything, who genuinely love and care for Sophie and our entire family. The friends who invite us to play even if we have to leave a few minutes in, or we spend the whole time doing repetitive things or working through sensory needs. The dozens of people who cheer for us when we share milestones like using a straw, or Sophie saying “mama,” or the first time Sophie hugged Milo.
We are loved. We are loved by Heaven, by family, by friends, and even by strangers. Thank you for being here in victory or defeat, rain or shine.
To anyone starting down this path (or any path, really): things do get better. Everyone’s version of better will be different from everyone else’s. But when you open yourself up to the miracles and goodness around you, it will help fill in some of the many cracks and holes that may have been ripped into your heart. Keep walking. The road may be darker than you’ve ever felt it was before. You may feel alone. You may feel uncertain. The road may seem never to end. But look forward, look upward, and look at the little light beside you. You’ll have all the light you need to take one more step into the darkness.
Happy birthday to one of my favorite little lights. I love you, Sophie girl. I wish you all the happiness, joy, and peace that life has to offer, and I hope and pray that I can be a better mama to you tomorrow than I am today. Happy birthday, sweet girl. You’re three.
Melanie S says
April 14, 2014 at 6:06 amHappy birthday to Sophie! One thing you forgot was that God gave you to Sophie. You are just the mother she needs and even in those moments of frustration/despair/what ifs, YOU are exactly who Sophie (and Milo) need in their lives. So happy birthday to you too. Happy 3 year birthday of being a mom and happy one year birthday on being a cheerleader, therapist, champion, and inspiration to both your children and your readers!
Jamie says
April 17, 2014 at 10:16 amDitto to all of what Melanie said! She couldn’t be even more right! 🙂
Kajsa says
April 14, 2014 at 7:43 amHappy Birthday Sophie! So many great accomplishments this year! Such a beautiful girl teaching everyone about love all around her. Thank you for sharing her/your story.
Emily says
April 14, 2014 at 8:43 amHappy Birthday beautiful little Sophie! So fun to see the joy you are bringing in to the world and to your family. You’ve got such a wonderful mama, whose love for you is so clearly seen in writing and displayed in her daily acts of love and kindness for you. Excited to see the joys that you will experience as a 3 year old.
Lindsay says
April 14, 2014 at 8:56 amOh Emily, that was beautiful!
Haley says
April 14, 2014 at 9:00 amWhat a beautiful post! Your thoughts and feelings apply beautifully to your family’s experience, and to a million other challenges we can face in life. Thank you for your wonderful outlook and faith.
Nicole says
April 14, 2014 at 9:00 amThis post brought tears to my eyes! you are such an incredible mom, and she is such a sweet, sweet girl. Happy birthday Sophie!
Jade says
April 14, 2014 at 9:17 amOh Em, this while post made me cry. I love all that you share about the trials and triumphs with Sophie and Milo. I admire your strength and fortitude. One of the things I’ve come to realize is that God loves us, ALL of us! Happy birthday to Sophie and lots of love from the Jones family!
collette Mortenson says
April 14, 2014 at 9:50 amWhat a beautiful post my friend! And HAPPY BIRTHDAY to the cutest Sophie girl around! I can’t believe our little munchkins are 3 this week! Barrett sends his little girlfriend a big slobbery birthday kiss! Miss you guys!
Chiara Cameron says
April 14, 2014 at 11:00 amI cried. Because although my path is not the same as yours, I have come to know those same things. God IS good. Life CAN be so hard. And love always wins. Thank you so much Emily for sharing your journey. It is often in the journey of others I find courage to continue my own.
Momma Lynn says
April 14, 2014 at 11:26 amWe’ll be dancing and singing (and possibly eating a bit of ice cream) in honor of Sophie’s Birthday tomorrow! It is/has been an amazing journey so far, on this new and unexplored trail. There have been a few skinned knees along the way, but the views have been breathtaking!
We honor YOU, her immediate family, as well as Sophie. We are grateful to learn from you, to cheer for you, and to appreciate with new eyes, each and every accomplishment earned, and closed door opened.
Thank you for sharing a peek into your family and their unique experiences. We love you all!!
mel@thedizzymom says
April 14, 2014 at 11:32 amHappy birthday, Sophie! 3 is so much fun, you’ll love it 🙂
Dear Emily,
With tears and a smile I say, “you go, mama!” You are a light to your readers 🙂
-Mel
Betsy says
April 14, 2014 at 11:37 amThis was so beautifully written, your children are so lucky to have you as their mom. Happy birthday, Sophie!
Becky C. says
April 14, 2014 at 11:43 amThis is absolutely beautiful. It brought me to tears. What a wonderful tribute to Sophie, and an amazing testament of you as an amazing, strong mama. Happy Birthday to precious Sophie!
Anna says
April 14, 2014 at 11:45 amHappy Birthday sweet Sophie!
Emily – your blog always represents happy reading for me, even when it is reflecting on hard things. You are an inspiration.
The fact that Sophie’s therapies are covered on any student insurance plan is miraculous – what a blessing.
And the part about sensory issues really rang true for me – Everly doesn’t have autism, but she does have sensory issues and it is so hard to watch her struggle and not have better solutions to help her. We work with her, but, sigh, some days are just hard. It often feels like 2 steps forward, 1 step back.
Katie b says
April 14, 2014 at 12:00 pmHeavenly Father sure knew what he was doing when he gave that little light to such a devoted, thoughtful, and loving mother. Happy birthday, Sophie!
Cindy says
April 14, 2014 at 12:49 pmI started reading your blog for the awesome recipes, but I find your amazing attitude towards life and family so very inspiring. Thankyou so much for sharing Emily.
Happy Birthday Sophie!
Andrea says
April 14, 2014 at 1:35 pmPerfect. As always. You’re doing good. I love you.
Shelley says
April 14, 2014 at 1:52 pmHappy Birthday sweet Sophie! You are loved and admired from far away! (Jackson loves to see your pictures and knows you by name.).
Emily, thank you! Thank you for being positive and seeing things positively, for being open and honest and for sharing your light and the light of your little family. I admire you so , and strive to look at things more positively as you do… and it’s working 🙂 Your example means the world to me. I feel so lucky to be adopted into your family circle. You are loved and you are an amazing momma! Keep on swimming
Becky @ lovetobeinthekitchen says
April 14, 2014 at 2:38 pmOh Emily, this post was so sweet. You are such a wonderful mother. Sophie is such a sweet little girl and she is so blessed to have you and Michael as her parents. Milo is such a sweet boy and he sounds like a wonderful blessing in your family and the perfect brother for Sophie.
Roberta Breuer says
April 14, 2014 at 4:26 pmWhat a pleasant surprise to have a blog post from you today! Happy Birthday Sophie! From your secret friend, Roberta B.
Every Friday I look forward to reading your post and so enjoy your writing. I am especially glad that you have “jelly side up”!!! You may not always feel that way, but I certainly see it that way!
Best wishes,
Roberta Breuer
emily says
April 14, 2014 at 4:54 pmIt was so nice to meet you today! I felt so silly that I didn’t think to ask your name. THANK YOU for saying hi, and for your lovely note. Happy thoughts your way!
Roberta Breuer says
April 14, 2014 at 6:06 pmYou may have me confused with someone else – unfortunately, I have not met you.
emily says
April 14, 2014 at 7:34 pmOh whoops! I met a reader today in Target and thought she’d leave me a comment later! I thought it was you! Sorry for the confusion but thank you anyway for the sweet comment!
EllenL says
April 14, 2014 at 8:50 pmHappy Birthday, beautiful ballerina!
So much progress in a year, and soon you will be starting preschool. Best wishes, Sophie!
Heather Miller says
April 14, 2014 at 8:53 pmGreat post Emily! Happy birthday Sophie!! I love the picture of her by her crib, great shot. You are incredible to recognize and be thankful for all the good things even when life is so hard. I needed to read this post- today we found out that my husband didn’t get this job we’ve been interviewing for the last two months for. Six interviews- down to the final two and they told us today that they went with the other candidate. We currently have no therapy for Jude, he’s struggling and we’re just trying our absolute best with him on our own and the gap seems so large some days and other days it’s okay. I 100% agree with you about the word ‘autistic’ I’ve nearly dropped it from my vernacular and just refer to Jude as being not neurotypical. I feel like it gives no room for who the child actually is beyond their limitations. We give Jude an antiviral, and it made a night and day difference in his behavior. I don’t quite understand why it helps him so much but it made my days go from every day nearly insufferable to doable and often times truly enjoyable. I love Sophie, she smiles so much.
Elisabeth says
April 22, 2014 at 3:20 pmHeather, I’m so so so heartbroken Ryan didn’t get the job!! We’ll continue to pray for you and those beautiful boys of yours! You’ve been through the ringer these last couple of years, but you remain a positive light in my life from afar! Sigh. I hope something even better comes along soon. They were crazy not to grab Ryan when they had the chance. Xoxo
Katie Carter says
April 15, 2014 at 6:53 amOh great, weepy at 7am. This was beautiful, and I agree with every comment above. Your family and every member in it was chosen with purpose to help, love and light each others’ lives in special ways. I love you, and I love dear Sophie and hope she has the happiest birthday!
Brianne S says
April 15, 2014 at 11:33 amHappy birthday Sophie! You are an amazing little girl and I’m so thankful for the time I spent with you over the last several months! You are so sweet and I enjoyed my weekly time with you so very much!
Emily-you are such an awesome momma! This is a beautiful post and brought tears to my eyes.
-Miss Bri 🙂
Severiana says
April 15, 2014 at 11:36 amMade me cry…..beautiful…..your family is an inspiration…
Much love to you all
Severiana
Victoria says
April 15, 2014 at 12:57 pmDear Emily,
My SIL sent me a link to your blog for the recipes (which are great, thank you!) But what is more beautiful and inspiring and fantastic about this space is reading about your beautiful family and the grace with which you live your lives. Thanks for letting ‘us’ in the great wide world be a part of it so that we each grow a little bit learning from you and Sophie.
Happy birthday to your lovely ballerina!
Tiffany S says
April 15, 2014 at 1:03 pmHappy birthday to your sweet daughter. I just was told about your blog from my dear friend Rachel Martinez. My son was just diagnosed in January with Autism, he will be 3 in June. It is wonderful to connect with another mom in the blogging world. To read the similarities and differences my son Max has with your daughter. Thank you for being vulnerable Thank you for writing from your heart. I look forward to reading your blog more!
Becky says
April 15, 2014 at 7:07 pmAbsolutely beautiful. Thank you for sharing.
Erin says
April 15, 2014 at 7:09 pmWhat an incredible post and beautiful tribute to your daughter, who she is, now in this moment. Wishing her a wonderful birthday…and to you, thank you for sharing your journey with the blog world, as hard as it might be sometimes, your honesty is inspiring. May you be blessed with many more wonderful moments and memories with your beautiful family.
Where Did The Bird Go says
April 15, 2014 at 9:54 pmI agree. Things do get better. They get better because we come up with a new plan. The original plan (what we might have envisioned for our child’s life) doesn’t work well with the interruptions and opportunities (autism) that occur in our lives. I’ve realized that what I saw for Cali’s future and “planned” for wasn’t the best plan after all, so I never get sad over what might have been. Really, “might have been”, never was a reality so why even go there!
It get’s better because we develop a newer more flexible plan, ready to change and evolve with life!!
Melissa says
April 15, 2014 at 10:01 pmHappy Birthday Sophie! Happy 3 years to all of you on her incredible life’s journey. I truly appreciate your optimism and outlook, it’s a great example for anyone.
Nicole@HeatOvenTo350 says
April 16, 2014 at 3:28 amWhat a beautiful post. I love your cheerful view of life and I love being able to share in Sophie’s successes through your posts.
Anna says
April 16, 2014 at 1:02 pmWhat a wonderful read! Sophie is such a beautiful girl and she is so lucky to have a Momma as thoughtful and sensitive as you!
Jessica says
April 16, 2014 at 1:15 pmHow beautifully said. You were clearly chosen to be Sophie’s mama. Many would buckle from the challenge but you are not… Magnifying your calling as a mom. Wishing you the best in the coming year.
Daryl says
April 18, 2014 at 8:42 amLove you Emily! YOU have always been a sweet light in MY life!!
Jen says
April 18, 2014 at 9:46 amHappy Birthday Sophie!!! It looks like you had a wonderful day!!
I have to say, I agree with you pretty much one hundred (million) percent about everything (just change the diagnosis a little bit) 🙂
God is good and we are oh so blessed. It’s amazing what a difference a year makes isn’t it? I find comfort in knowing that there are so many wonderful families who are living such similar journeys. The hours of therapy are long, but the progress and the milestones are oh so sweet. I am so thrilled to see the relationship developing between brother and sister as well. It will be such a special bond as they grow. Thank you! I so enjoyed reading your perspective!
Kay Cessna says
April 18, 2014 at 9:59 pmDo you know how loved your little sweet, beautiful daughter is loved. Milo’s is also loved f or his nativity and perseverance in making his sister happy and being a part of her life. On this Easter know your life is different and more difficult than most but at the end of the day you are so blessed. God has picked you for Sophie’s mother and His choice is perfect as you see her attributes as well as her shortcomings and love her no matter what. Know you are loved as are the children. The promise of life eternal is again today is confirmed. In three days He will arise and the promise of everlasting life is a reality. xo