One Lovely Life

Healthy Food + Happy Thoughts + Inspiration for Living Your Best Life

While I Breathe, I Hope

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One Lovely Life
“So, how are you doing?”

I get this question often. My heart still melts in gratitude with every comment on this post, where we talked about Sophie’s diagnosis. About how our lives are new and different. About learning to love a life different than the one I imagined. It’s been months since that post, and I still, almost weekly, have someone offer kind words of encouragement, comfort, solidarity, and hope. Thank you to each one of you. I sincerely choke up almost every time, and I’m not much for tears.

So.

How are we doing?


One Lovely Life
Sophie’s made some amazing progress over the past few months. Since March, she’s gone from 2-3 prompted words to 18 unprompted words, with about a dozen or more prompted words. We’ve turned our diet upside down. We’ve seen almost a dozen doctors and specialists. We’ve had loads of evaluations. We’ve completed hours and hours of therapy. We’re trying to help her adjust to a new home, a new church congregation, a new community, and a new team of therapists. It’s slow work. It’s worthwhile work. It’s exhausting work.

Although I often lay awake in bed wondering a lot of things, I still have yet to wonder “Why Me?” 

I want to be clear here that I don’t feel unaffected. I don’t feel special. I don’t feel prepared or specially-equipped to mother a daughter with special needs. I still feel very lost, usually uncertain, and sometimes alone. The axis I’d built my life upon has shifted, and with it comes a new tide to adapt to. Instead of “Why Me?”, my thoughts are “What do I do?“,  “How will this all work out?“, or even “Please, please let me be brave enough to face tomorrow.” Sometimes I wonder how everyone around me can still be going on with their lives when mine has so largely changed. It’s in those moments–in a store, at the park, sometimes at church, or even for a fleeting moment at a family gathering–I’ll look around and feel a little alone and lost.

Truthfully, there have been a lot of difficult days, and many overwhelming situations and challenges. It’s been too raw and real to write about much. I’ve been afraid of over-sharing, or of using this space in a negative way. So many internet homes for autism have grown to be bitter or self-pitying. I can’t live my life that way (not that it’s not tempting on a daily basis).

(deep breath) I recently heard the phrase at church “adversity is mandatory; misery is optional.” It’s been one of many mantras I tell myself on hard days. All people, regardless of age, education, race, religion, creed, ability, or disability experience adversity. Our response to adversity is what will allow misery or happiness into our lives.

In the core of me, I believe that sadness, grief, and frustration are all part of life. They make the good times better, and it’s during times of adversity that we grow the most. I believe it’s perfectly normal and even healthy to feel sad, to feel grief, or to feel frustration. I don’t think you want to dwell there forever, but I feel that the highs and lows of life are part of a natural, God-intended experience. It’s through opposition that we appreciate goodness, peace, happiness, and love.

That said, lessons can be so very hard to learn. A few weeks ago, in a place we thought we were safe, we were asked to leave for the first time because someone felt uncomfortable around Sophie. Some unkind words were said, and, before I knew it, I was outside with Sophie stunned, heartbroken, and sobbing. After pulling myself back together, I realized that I need to be prepared for this kind of experience many times over the course of Sophie’s lifetime. We’ve experienced disapproving looks, judgmental comments, and even accusations that this is something we have caused. It’s painful. It stings. I even feel angry about it sometimes and just want to shout back something that makes those people feel as ridiculous and small as the comments they’ve made.

One Lovely Life
But, just as I said before, sadness, grief, and frustration don’t feel like the place that God intends me to dwell. Thankfully–blessedly–those sad moments are tempered with ones like the kind lady who walked back to help me hold my cart steady while I tried to buckle Sophie into the shopping cart with Milo strapped to my chest. Or, the mom who, wrangling her own babies just smiles in a way that says “I’ve been there. It gets better.” To the sweet special-needs moms who have reached out in understanding. To the people who, without fail, greet Sophie cheerfully without any expectation that she’ll respond and no offense taken when she doesn’t. To the people at the splash pad or parks who just let us play without whispering, gossiping, or making uncouth observations about Sophie’s habits or abilities. In short, the people who offer kindness, understanding, and love in place of judgement, fear, or hate.

These last months have stretched and tried me in a way I truly hoped never to experience. Still, because of these last difficult months, I’m learning to cultivate sincere compassion for the mom in the grocery store with crying, tantruming children, to pick myself up when I don’t think I can go any further, to become an advocate for a daughter and son who need me, and to find joy and hope in something as small as eye contact. I’m learning to find miracles in the small places they hide–a few hours’ of uninterrupted sleep, two babies in the same shopping cart, a kiss, a word, or light in Sophie’s eyes. I’ve not yet mastered the skills, but I’m learning, practicing, and growing.

There are people we come across daily who don’t understand. Who may judge. Who may say unkind things. Who treat us harshly or unfairly. There are illnesses, losses, mysteries, difficulties, and all other kinds of challenges–financial, mental, physical, spiritual. But while I breathe, I hope.

One Lovely Life
While I breathe, I hope.

Adversity is mandatory, but misery is optional. I hold the belief that God doesn’t give us more than He can handle. I also think He thinks I’m much stronger than I feel at times. So, adversity, here we are. As for misery, the only way I can choose to avoid misery is to cling tooth and nail to hope. Hope that it will get easier. Hope that I’ll continue to grow and learn. Hope that my heart will soften as my skin thickens. Hope that time will be my friend. Then to take that hope and work with all I have to make it come true.

Dear reader, thank you for making this a happy corner of the internet. I’m in the middle of the hardest time of my life to date, and I love that, almost always, this is a place where I feel excited to share new recipes and a place I feel safe sharing the joys and the not-joys of our family. It’s my way of connecting to far-away family members, friends, and now blog friends and even complete strangers. Thank you for the happy thoughts you have been sending our way.

 

Comments

  1. Becky C. says

    September 18, 2013 at 6:41 am

    I don’t know you, but still think so highly of you. You are strong beyond measure, and so clearly such a good mama to your kiddos. Shame on the people who say unkind words, and don’t have a heart open enough to understand someone different than them. Beautiful post. You are an inspiration.

    Reply

  2. Anna says

    September 18, 2013 at 7:02 am

    This made me cry. In a good way. Hang in there Emily. And if you ever come to Utah we’d love to see all of you. And if Sophie’s having a rough time I can promise we would never be uncomfortable or ask you to leave. That little story broke my heart. How awful for all of you. And I understand that feeling of having your world completely shift and everyone else continuing on in their normal lives. It can be so lonely. Here’s a big Internet hug friend, I hope things keep improving for you all.

    Reply

  3. Jordan says

    September 18, 2013 at 7:17 am

    You are incredible, my dear sister. I love the message here! “While I breathe, I hope.” AND the “Adversity is mandatory, but misery is optional.” You are fighting so hard to keep breathing and keep hoping, and I feel like you are going to see the difference in the long run, even if it might not make some of the days easier.

    Bless you. I pray for you.

    Reply

  4. Madison Ellingson says

    September 18, 2013 at 7:26 am

    Emily I love your positive outlook on life! you are my hero! I love reading your blog, thoughts, and recipes. thank you for your strength, courage, and will. One of my favorite quotes by President Benson (I think.. or maybe it was President Kimball) is “God does notice us, but it is usually through other people that he meets our needs”. I hope there are people around you that are helping to meet your needs as I am sure through this blog you are meeting others’ needs. God is so mindful of you and like you said, won’t give you anything you can’t handle. You are so strong!! We love you!

    Reply

  5. Aly says

    September 18, 2013 at 7:36 am

    thank you so much for sharing this. I love your blog and hearing about your sweet family and know that it’s not easy to be vulnerable and share those parts of your life. you are an awesome mother, sophie is so lucky to have you! sending lots of love and prayers your way.

    Reply

  7. Erin says

    September 18, 2013 at 7:55 am

    It’s always a shame when the very people around us aren’t there as a source of strength during our challenges. We could all help lift each other in the little day to day struggles that make our days happy or hard.

    Your attitude and perspective are inspiring and I appreciate the sunshine you reflect through your decisions to hope and look for the positive.

    Reply

  8. Claudia says

    September 18, 2013 at 8:15 am

    Thank you for sharing your family with me. Your strength and wisdom has helped me …..a grandmother….to be a better person. Our grand daughter is special needs and I fully understand the 24/7 commitment to help Sophie to become the best she can be. Your family are included in my prayers as you and your family continue this journey.

    Reply

  9. Julianne says

    September 18, 2013 at 8:17 am

    This brought tears to my eyes. You and your sweet family are on my mind often. Your faith and perseverance are remarkable. Love you girl.

    Reply

  10. Jordyn says

    September 18, 2013 at 8:17 am

    I so enjoy reading your blog and getting updates on your sweet family. I admire your strength and your attitude. I love the quote “adversity is mandatory, misery is optional”. I am having a hard time at work and this quote really helps to put things into perspective. Thank you so much for sharing your story with us. I will continue to pray for you and your family and for the people with unkind hearts. Sophie and Milo are blessed to have such a wonderful mother.

    Reply

  11. AnnCP says

    September 18, 2013 at 8:33 am

    Oh, Emily. My heart is broken that someone would ask you to leave. You kindly reminded me that my problems and issues are minuscule, but more importantly, to breathe and hope on for those daily miracles. And if they don’t come today, they will be there when you least expect them. Love you too. (Julianne’s mom)

    Reply

  12. Jamie says

    September 18, 2013 at 8:38 am

    You are incredible, SO strong and beautiful on the inside and out. Those two adorable little kids are lucky to have you as their mom. Little kids with autism will always have a special place in my heart and even though I have only met you and Sophie on Skype, that little girl of yours is definitely in that place.

    Reply

  13. Haley says

    September 18, 2013 at 8:38 am

    You are inspiring. Thank you for your words of hope even as you hold on to the end of your rope . You are an amazing woman!

    Reply

  14. Kamie Tingey says

    September 18, 2013 at 8:57 am

    Emily, thank you again for sharing your life. You inspire me. Thank you for touching my heart today. I recently saw a quote on Pinterest that said, “If you think my hands are full, you should see my heart.” I related it to myself with two little kids because it is busy, but I wouldn’t trade it for anything. I know you feel the same about your beautiful kids. You are a wonderful example and an amazing mother. Thank you again 🙂

    Reply

  15. Clara says

    September 18, 2013 at 8:59 am

    ciao emily,
    I’ve cried reading the post.
    thak you for sharing those hards moments.
    you and your family are in my heart.
    from switzerland with love
    clara
    (sorry for my bad english)

    Reply

  16. Jennifer says

    September 18, 2013 at 10:45 am

    Emily, I just wanted to be another one that tells you it does indeed get better. It will be a little bit of a roller coaster ride but you will find the ride has as much as high’s as it does lows. The only advice I will give you as a parent of a now adult child is treat her like you would if she didn’t have autism. Encourage her, work with her and let her know that she can accomplish GREAT things in her life. I am living proof of that. My son, who recently turned 19 is now preparing for a mission. I still remember the day shortly after his diagnosis wondering if he would be able to serve a mission, among many other things. But he continues to prove to us every day how amazing he is and what he can accomplish. We as parents, never let his diagnosis be an excuse. So many parents do that and I really think it holds them back. I think you might be encouraged if I shared with you his eagle project he did to earn his eagle with the Boy Scouts: http://www.youtube.com/watch?v=_GXcpKRiszc. Blessings to you and your family and to sweet Sophie, who I know will grow up to accomplish many great things in her life!

    Reply

  17. Momma Lynn says

    September 18, 2013 at 10:45 am

    How I love your family! Thank you for continuing to walk this difficult path. You were already an amazing person before you became a mother, but the new person you are becoming, especially in the last few years, will change the world for many people. You have grown in compassion, understanding, patience, kindness, fortitude, humility, acceptance, gentleness, grace, faith, courage, and love.

    ‘People speak of misfortunes…,’ remarked Pierre, ‘but if at this moment I were asked: “Would you rather be what you were before you were taken prisoner, or go through this all again?” then for heaven’s sake let me again have captivity and horse flesh! We imagine that when we are thrown out of our usual ruts all is lost, but it is only then that what is new begins. While there is life there is happiness.’
    Leo Tolstoy

    Reply

  18. Aunt Kelly says

    September 18, 2013 at 11:15 am

    I can’t say anything that hasn’t already been said (much better than I would have said it)! I love and admire you and pray for you to have the strength and courage to persevere. You are a blessing.

    Reply

  19. Jessica says

    September 18, 2013 at 11:22 am

    I want EVERYONE to read this. How beautifully you explained the reality of your life. And no matter how strong this road makes you, the sting of a critical look or word will never entirely go away. But hopefully as people open up more and offer a deeper perspective into the life of a family with a child with special needs, like you so bravely have, we can all be a bit more compassionate to that mom in the grocery store. We’ve all been “that mom” with “that child” regardless if our child has special needs or not. I pray that you won’t feel lonely or like you can’t share, because the more you put yourself out there, the more you are giving others the ability to respond appropriately. I hope you’ll continue to be vulnerable on this blog, because I hang on your every word. Sophie and her pigtails… what a happy sight!

    Reply

    • emily says

      September 18, 2013 at 8:00 pm

      Jessica – Thank you so much for your comment. It really made my day. I admire so much all that you are doing with your music program and want so much to be more like you! Miss you, friend!

      Reply

  20. Bryce says

    September 18, 2013 at 11:24 am

    Hi Emily,

    I don’t know if I can help you in any way, but now that you all are closer, let me know.

    If Michael wants to play some board games like we did back in the day, I could probably round up the guys (Kevin, Cam, and Todd) and do a game night or something.

    You’ve got an incredible gift to stay positive in tough challenging situations. Keep up the strength.

    Bryce

    Reply

  21. Betsy says

    September 18, 2013 at 11:41 am

    I love that you ended the post with a link to the song Brave, lately I’ve been listening to that song on replay to get me through the day. While the infertility struggles my husband and I are dealing with are not the same as yours, I appreciate you sharing your story with us and your courage and hope give me courage and hope! You seem like a strong, amazing mother and your children are lucky to have you. On tough days, I think I’ll repeat this to myself over and over – “Adversity is mandatory, but misery is optional. I hold the belief that God doesn’t give us more than we can handle”. Thank you!

    Reply

    • emily says

      September 18, 2013 at 8:03 pm

      Betsy – Brave really is the best song. I love it! I’m so sorry to hear about your struggle with infertility. Before Sophie came along, that was part of our lives, and I can’t begin to imagine what pain you’re going through. I only know that for me, the ache of what I wanted and what wasn’t yet mine hurt so badly I could hardly breathe sometimes. My thoughts and prayers are with you, wishing you the very, very best.

      Reply

  22. Becky says

    September 18, 2013 at 11:46 am

    Thank you! My daughter was diagnosed with type 1 diabetes last year and while not very similar to what you are going through, I know about mourning the life you thought your child would have, the life you thought you would have. I know about really hard days and nights. Thank you for your cheerful faith, your desire to press forward, to continue with the “I can’t do it, but I’m doing it anyway” attitude. I love your hope and your grace. Thank you for sharing. God bless you.

    Reply

  23. Tara says

    September 18, 2013 at 11:58 am

    I PROMISE- it does get better!! So much better!! We’re only a year or two ahead of you in this unexpected journey but already, life is soooo much easier, better and enjoyable because of Ty’s progress, constant intervention, prayers and diligent effort and work. We are doing things I never thought we were capable of! I often tear up just looking at him because of how hard he works in his daily preschool therapy program where he spends 20 hours a week, I tear up when he comes and tells me something that excites him in a FULL sentence, I tear up when he comes and snuggles up to me and kisses me cheek and hold my hand, I tear up when he goes potty and no accidents for weeks- it does get better because of the experiences, effort and hardships we go through to help them progress. 2011 was the hardest year of my life- two babies and an uncontrollable, frustrated toddler who couldn’t communicate or function. I’d cry on the phone to my mom so very often just wondering why others seemed to have such “easy” kids and why mine were so hard and what I was doing wrong. Then came the diagnosis and acceptance and realization of our “new” life. And honestly, I love it now. I wouldn’t change things even if I could- something I’d never thought I’d say. I’ve learned and grown so much as a person and the unconditional love and PATIENCE I’ve developed would not have come in any other way. I don’t know what the future fully holds but I have very a very high hope for Ty- HOPE is powerful and real. We’ve been there, done that so I understand and my heart breaks for you- we understand! Elder Holland’s words have helped me time and time again- “Don’t give up, don’t you quit. You keep walking, you keep trying. There is help and happiness ahead- a lot of it. You keep your chin up. It will be alright in the end. Trust God and believe in good things to come.” 🙂

    Reply

    • emily says

      September 18, 2013 at 8:06 pm

      Tara – I needed this comment! We were devastated to learn Friday that Sophie did NOT get into the 20-hr/week preschool here that we so desperately wanted her to get into. We’ve been floundering this week trying to cobble together our best substitutes for therapies, and I needed to read about it getting better! So excited for your family’s coming addition and so grateful for your encouragement. YOU INSPIRE ME!

      Reply

  24. Brittany says

    September 18, 2013 at 12:28 pm

    This brought tears to my eyes thinking about the struggles you have been through and the unkind people you have come across but also because Sophie is so lucky to have parents like you and Michael to help her through this challenge. I can’t imagine what it must be like for kids like Sophie who are alone and isolated and don’t have anyone to help them. You have written so beautifully about your experiences and I know many will be touched and lifted up by your strength. I wish I lived closer so that I could help and have fun girls nights of watching shows and holding babies and watching Sophie twirl in her tutu. At least we have instagram!

    Reply

    • emily says

      September 18, 2013 at 8:07 pm

      Brittany – Seriously, at least we have instagram. I still can’t believe we haven’t met in real life. We’d be the very best of friends. Hope you’re having a happy, happy birthday!

      Reply

      • Brittany says

        September 20, 2013 at 10:58 am

        funny story, i think we were in the same ward at byu. i vaguely remember you and your sister–maybe jordan? were in the same ward as me. can’t remember which year. definitely not freshman year so sophomore or junior? i lived at heather cove and then a house by brick oven. i think i originally found your blog through my cousin phil who was freshman roommates with michael. random!

        Reply

        • emily says

          September 20, 2013 at 11:13 am

          WHAAAAT?! I did live in Heather Cove for a semester with my sister Jordan when Michael and I were engaged! Also, totally didn’t know you are Phil’s cousin!

          Reply

  25. Ally P says

    September 18, 2013 at 12:41 pm

    I find when people make comments, it is just because they don’t understand. If they understood, they would never say those things because they would know how much it hurts. I’ve been told that Jack’s struggles are a result of me being a first time mom and not knowing what I’m doing. I’ve been told that he’s shy and anxious because I treat him that way- like a self fulfilling prophecy. I’ve been told I’m overprotective or overanalyzing. I’ve been told autism is just a made up “trendy” diagnosis. I’ve been told to discipline him more (and less). Many of my friends stopped inviting us to things like playgroups and outings. Many of my friends stopped asking about Jack and just pretended he didn’t exist. Now that he is doing better and has really made miraculous progress, I have people telling me “see, I told you he was fine. I told you he’s talk.” Yes, he does talk. I’ve done daily therapy with him for years now. Both professional therapists and myself and my husband have worked ourselves to the point if exhaustion trying to help him. But rarely do others validate that. And that’s because they don’t see it. They don’t see your everyday life- the tantrums and the endless hard work and the sheer exhaustion of it. This used to bother me… I told my husband I felt like I was fighting a war all by myself and no one even cared. But now I have grown a thick skin, and I have come to accept that people who seem rude or uncaring are really just oblivious. And your hard work will pay off and will be validated… Just maybe not by the stranger at the park. Even now when I pick Jack up at preschool and the teacher tells me he had a great day with lots of smiles and participation, she doesn’t understand why it makes me cry. Because she didn’t see us 2 years ago, she doesn’t know how far we’ve come and how bumpy the road has been. But you know, and Michael knows, and Heavenly Father knows. And Sophie will know- if not today then one day- how you loved her so much you were willing to fight for her every single day!

    Sorry that was long! Hang in there. Glad you liked that video… I still watch it over and over. It makes me happy.

    Reply

    • emily says

      September 18, 2013 at 8:10 pm

      Ally – Thanks so much for your comment! I have been cheering Jack on every step of the preschool way as you’ve posted updates to facebook and instagram. It’s such a huge accomplishment and just one victory that demonstrates all the tireless hours of work you’ve been doing for years. I’m so encouraged by you and by Jack. WAY TO GO and thank you so much again.

      Reply

  27. Rachel M says

    September 18, 2013 at 3:09 pm

    I can’t quite remember if I’ve ever commented before, but my mother-in-law is in your mom’s ward and told me about your blog about a year ago and I’ve been following ever since. I just want you to know that you are amazing, and your sweet children are so lucky to have you. I honestly think about you all the time and hope that I can emulate your grace and happiness.

    Reply

  28. Meredith says

    September 18, 2013 at 4:52 pm

    So, you don’t know me but I am friends with your sister Elisabeth. I have been following your sweet family for a while now. I am so impressed with your outlook on life. Thank you for not making this blog negative or using it as a place to vent frustrations. I hope to be half the mother you are! You amaze me. It will all be worth it a few years down the road! My older brother is autistic. I know there were lots of years where I am sure my sweet momma went through the same things. It breaks my heart but at the same time I am so grateful to my parents and their perseverance in their trials, and allowing us to be a part of that. I have learned so much from my older brother and could not imagine life without him. I loved that video if the two brothers…it explained my thoughts perfectly. I am sure Milo will feel the same way one day. Keep up the good/ hard work. The Lord is blessing you in ways that will overwhelm you one day.

    Reply

  29. April says

    September 18, 2013 at 5:31 pm

    Emily. Wow. You are an amazing woman. I love you dearly and am so grateful that you have been blessed to be able to enrich my life. You have been given an amazing talent for writing and expressing your soul. I thank you for your friendship over the years and your example. You astound me.

    Peace and blessin’s 🙂

    Reply

  30. Lindsey G says

    September 18, 2013 at 6:35 pm

    So beautiful. This was written and posted in just the right time for me. On Friday, we find out what sort of school services our son qualifies for and possibly begin IEP development. While our son does not have autism, he does have a lot of struggles. And therefor our family has a lot of struggles. But he is my world and I wouldn’t trade it or anything. I have felt so many of the emotions you have and endured those ignorant looks and comments. A dear friend of mine texted me when I was telling her about all of the evaluations we’ve been through and how it is agonizing waiting for results so that we can move forward with a program that will help. I also told her that it frustrated me a little when people seemed to downplay my worries about our son and all of the efforts we are making for him by telling me, “oh he’s just a boy”, or “my kid did things like that at that age.” She responded with this: “Yes, I can see how that would be frustrating. Some ppl have good intentions, but don’t realize that their words may be painful. To me, it seems like you and Tim have taken steps along the way that you feel are necessary to take at the time. I keep reading books about the parent/teen relationship, and many sources reiterate that a parents’ “gut” is usually the best bet. You are the only person on the planet who has been called to take care of Evan and be his mother; no one else! Everything in you is attuned to care for his needs. I haven’t seen an alarmist attitude in you, only one seeking preventive steps, desiring to set Evan up for success, and respond in the best way you know how, with the resources available to you. Go, Mama! Ask God to help you always see the next step. Remember Ps 119:105, His Word is a light to our path… He’s not showing us the full plan, but asking us to trust Him and step out in to the little bit of lit path that is in front of us. Remember too that the absolute most important thing in Evans life is his relationship with the Lord. Keep helping him foster that! You’re doing a great job L.”

    Maybe you can find encouragement in my friend’s words. I know I sure did 🙂

    And I UNDERSTAND SO MUCH the feeling of being alone. Even though I see so many other families at therapy and know we are not the only ones experiencing this, it sure does feel isolated many times.

    Reply

  31. Shelley says

    September 18, 2013 at 7:06 pm

    This post brought lots of feelings and thoughts. First of all we love you guys and pray for you and think of you often. Secondly, your ability to write in a positive way and force the good to shine through amidst all the bad and ugly, is purely inspirational (and today the extra bit of courage and hope I needed). It made me think of the story about wearing signs around our neck explaining the hardships we are going through so people would just know and would “be gentle”. Many times I have wished for others to just be gentle to me (them not knowing they were hurting me or prying where I wasn’t ready to share yet, etc). So in turn I have been trying to be more gentle with others and hoping in turn they’ll be that way to me. I believe most unkind people are ignorant, not sure what to say, or are hurting themselves. So keep breathing and hoping and forget about them. Just keep swimming! You’re doing a marvelous job!

    Reply

  32. Marianne says

    September 18, 2013 at 7:53 pm

    Hi, I am friends with your sister Elisabeth. I am also a special education teacher. I get to spend a few hours every day with beautiful kids like Sophie. I understand what a miracle eye contact is. I also know that you have to work 100 times harder to help Sophie learn all of the simple things that come so easily to most kids. I recognize that I enjoy a few hours a day but that parents have the rest of those 24 hours to survive, most not spent sleeping. I also want you to know that you are not wrong to hope. Yesterday I had two fifth grade students with autism carry on a two-way conversation, maintaining eye contact, staying on the same topic, that started with “Hi, my name is _____, what’s your name? Would you like to be my friend?” That day will come for you and it will be so much sweeter because of all of the tiny miracles that came before. You are among the incredible group of heroes in my book.

    Reply

  33. Melissa says

    September 18, 2013 at 8:39 pm

    Emily, thank you for writing about your journey. None of us will ever have to experience all the world’s trials, but we can all become more compassionate when we are willing to share our heartaches. With the rise in autism your voice becomes increasingly important, so keep on sharing and keep on hoping. I really believe that your little light makes a big difference.

    *Hugs*

    Reply

  36. Billie Jean says

    September 19, 2013 at 7:34 am

    Emily,

    Thank you for sharing – you’re an incredible mom, which I know you learned from your mom and her great example to us all. May Heavenly Father’s love and peace be with you through this trial. His Son knows intimately what you’re going through so I know he’ll be there to help your family.

    Love,
    Billie Jean Pew

    Reply

  37. Wanda says

    September 19, 2013 at 5:02 pm

    All the way from far far away Greece, may I say how wonderful I think you are! You brought a tear to my eye and a smile to my heart! You also gave me courage and perspective! Thank you for everything you share! Hang in there, be well and God bless!!
    (a super big hug for your sweet Sophie. She’s absolutely lovely – and so is your young prince!!)

    Wanda

    Reply

  38. Kellie Naseman says

    September 20, 2013 at 5:03 am

    Hi Emily! It has been ages since our time in high school, but I’ve been following your blog for awhile now. Your writing and emotion is so inspiring! I just wanted to let you know you are always in my thoughts and prayers!

    Reply

  39. Pam says

    September 20, 2013 at 5:52 am

    Emily: I’ve been reading your site for some time now and was so saddened to hear about Sophie. As a faithful follower of Christ, I know that if he leads you to it, he’ll lead you through it and your blog posts are a testament to that. I hope that as you navigate the difficult course with Sophie that what happened to your family recently is the rare exception and not the rule. Through your posts, you shine the beacon of what God’s purpose is for us all. The one thought that kept coming into my mind since I read “while I breathe, I hope” is “what would Jesus do”? And YOU do that each and everyday! I hope that God continues to shower your family with blessings each and everyday and please know in your darkest times, that there are so many of us out here praying for you and your family.
    Have a blessed weekend dear friend!

    Reply

  40. Anna says

    September 20, 2013 at 9:27 am

    I admire your strength and also your beautiful writing! Remember God doesn’t make mistakes.
    Sending my love and prayers through cyber space to you and your family!

    Reply

  41. Katie b says

    September 20, 2013 at 2:12 pm

    It takes me a million years to comment on these posts because I open it up and then think about it for a few days. I don’t know why, I never come up with anything profound, maybe it just reinforces what’s important. And what’s important is that you are an incredible mother who loves her kids despite the foreign challenges they face and the heartbreak the ignorant may cause. I pray for your family every day and I know Heavenly Father is pleased with you and loves you all.

    Reply

  42. Iver says

    September 21, 2013 at 11:32 pm

    For the last couple of years, I have been following your post. From afar, I have always adored your creative recipes and the sweet moments that you share with your readers. For the longest time, I never knew that your daughter was diagnosed with autism. After reading this post, I couldn’t help but to say something. You sound like a great mother and I can tell that you are doing everything in your power to be the best for your children. I am a Behavior Therapist and work 1:1 with children within the Austim Spectrum Disorder, and I just want to commend you for being such a strong and loving mother to your daughter. I understand the struggles. It may be difficult for you everyday and it may be even harder for her, but you are doing great. I hope that Sophie continues to make great progress. 🙂

    Reply

  43. Malinda says

    September 23, 2013 at 2:21 pm

    I am new to your blog and although I don’t have much experience with autism, my husband is a therapist a one of the top therapeutic schools in the nation for girls on the spectrum. Please please please look into attachemt therapy and if possible find a therapist who uses it. With all the comments left I feel a little silly leaving one, since I don’t know you and I just found your blog, but I think it can really eelpout in the long run. I wish you all the best.

    Reply

  45. Rebecca says

    September 25, 2013 at 11:44 am

    I have a special needs daughter who is just about to turn 20 with a son of her own. I read this shortly after she was diagnosed and share it as often as possible. I hope this poem touches you as much as it has touched me.

    A Trip to Holland

    By Emily Perl Kingsley

    I am often asked to describe the experience of raising a child with a disability — to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

    When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans… the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives.

    You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!”
    “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place.

    So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, ” Yes, that’s where I was supposed to go. That’s what I had planned.”

    And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

    Reply

  46. Kelly Minyard says

    November 29, 2014 at 10:52 am

    Emily,

    After originally starting to follow your blog after finding it while searching for Paleo-friendly recipes, I spent 2 hours last night reading about you and your sweet family’s long journey, and I wanted to let you know that you all have a special place in my heart and prayers. Your faith, transparency, and perseverance is inspiring and your precious daughter’s strength and determination is apparent (and I think we all know where she gets it!). I am getting my Master’s in Psychology with a specialty in sensory integration, and your thankfulness for all your therapists is also something that keeps us going. Thank you for your willingness to choose joy in the midst of hard times, and your bravery to share both the celebration and pain with all of us.

    I am sure you’ve seen some of this, but here is my favorite place to find sensory toys:
    http://www.childtherapytoys.com/store/sensory_toys.html
    http://www.childtherapytoys.com/store/page440.html
    http://www.childtherapytoys.com/store/SandSandBoxesSensoryTables.html

    And a website where you can buy machine-washable custom-made weighted blankets made by the parents of a boy with autism, in case Sophie likes more pressure than normal blankets can provide: http://www.weightedblanket.net/about_weighted_blankets.html

    And lastly, I came across this earlier today and thought it might be something you would want to share with your readers. It is a list of ways to give gifts this year that benefit autism research and those who are living with autism: http://www.autismspeaks.org/shop-little-help-lot

    I hope some of this helps! You and your husband are an inspiration, and I am praying that this Christmas brings amazing miracles to your amazing family.

    -Kelly

    Reply

    • emily says

      November 30, 2014 at 6:41 pm

      Kelly, thank you so much for your sweet note. It meant so much and came at just the right moment. I so appreciate the encouragement and your prayers and well wishes. I can feel them! Thank you, too, for the resources and websites. I hadn’t seen some of them and I can’t wait to look through them more. All the best in your masters studies!

      Reply

  47. Kim Packer says

    September 19, 2017 at 5:33 am

    Emily, your mom is my visiting teacher out here in Indiana and your dad is our bishop. I love them and think so highly of them both.

    Thank you so much for your words. I also have a son who is on the spectrum. I feel like as parents of children on the spectrum, or parents of kids with special needs of any kind, we live unique lives, with nuanced challenges and daily intensity, that isn’t usually obvious to most people outside our situation.

    I feel like because we are working so hard to help our children succeed, it can be so painful when rejections come.

    This last summer, I reached out to the mother of my son’s best friend from school. My son was missing his friend, and I wanted to set up some play dates. His mother would not return my call or email, and we went through the summer in silence.

    It was heartbreaking for me, probably in the way that you would understand, in the sense that it felt like a foreshadow of so many more heart aches to come in his life.

    It took me a long while to recover, And I think the only thing that finally snapped me out, was when my son’s therapist reminded me that those are at the mothers issues. That surely we weren’t the first person she had responded that way to, and we wouldn’t be the last. She tried to remind me of all the other play dates we have had that have been great and all the other parents in my life who go out of their way to see and love my child. But it’s funny that I am not sure I will ever completely shake it. I think it will probably remain with me for longer than I would like.

    I think perhaps the hardest part for me, is that these experiences strike anger and bitterness and me. I give those people a piece of my mind, in my head. And I don’t want to be a bitter person, and I don’t want to carry anger for other people. So it becomes one more thing I have to work through, in addition to all the other emotion that I deal with. And to me, it just seems unfair, given all the other daily battles that we fight.

    I just want to tell you how much I appreciate your openness, and your inspiring words. Your mom is always encouraging to me and seems to understand our challenges, because I think she lives them so much through you.

    I appreciate that she understands sensory issues, that she gets eating challenges, that she gets social challenges. And she gets it in a way that few people often do.

    So thank you for being one more voice that is relatable and that shares your experience in a very real and pragmatic way. And thank you for sharing the spiritual side of things that encourage you to help. That is so helpful and inspiring to me. and I apologize for my novel 🙂

    Reply

    • Emily says

      September 19, 2017 at 5:51 am

      Kim – PLEASE don’t apologize! Thank you SO MUCH for this sweet, thoughtful comment. I resonate so much with what you shared. Those kinds of experiences can hurt *so* much! I admire that you’re still fighting for love and kindness even when people are unkind.

      Wishing all the very best for you and your son, and I hope I get to meet you next time I visit my parents!

      Reply

  48. Amanda says

    September 19, 2017 at 8:52 am

    Thank you for sharing this. I know that it has been a few years. But I love your quote that you shared about adversity. When we lost our baby for the longest time I was miserable. But then I decided I was done being sad. Often time people ask me how I can be okay with what happened. Or how I can seem so happy. I tell them that being a member of the church is a big reason and the other is I choose not to be sad anymore. As we approach what would be her second birthday I will have to remind my self to choose not to be miserable. So thank you for sharing your journey even though I am late to the party.

    Reply

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