Back in September, Sophie suddenly and severely developed some neurological issues. They got so severe (at over 300 occurrences an hour) that our pediatrician sent us to the children’s hospital emergency room to rule out seizures. After several hours in the E.R. (Side note: Best E.R experience ever. Every single member of the staff was kind, patient, and sweet. The waiting rooms had toys and Disney Junior on tv, and there were tiny toilets in the bathrooms), we ruled out seizures but the doctors were pursuing some other leads, some of which were very scary and serious.
We were so grateful to leave that day having ruled out tumors, but we’d have to wait ages for a few more tests to come back. We had to put her on a very intense medication to control the involuntary movements and it was awful. She was exhausted and even when we decreased the dose, she really wasn’t herself for the next few months.
Then, like a Christmas miracle, a few days before Christmas, everything disappeared overnight. Gone. Completely.
And so it stayed for the next many months.
She was off her medication by January and back to herself shortly after. We thought maybe we were in the clear, but on Easter she caught a cold and on Mother’s Day, shortly after breakfast, everything was back.
And so it’s stayed for the next many months.
As we sat in the pediatric neurologist’s office again yesterday, he watched Sophie and played with her. He listened to me explain everything and asked me questions. But there came a point where the room grew silent, and he sat in his chair facing Sophie, just watching her, then staring at his shoes. Finally, after a big breath, he looked up at me and said “Mama, there’s nothing else to do. We can re-run every test, but even if something came up positive, there is nothing to be done. We can put her back on the medication, but I wouldn’t advise it, and I don’t think you want to do that to her either. You are doing what can be done. There is nothing more to do.”
My eyes met his and I knew he was right. We’ve seen many, many specialists over the last few months, and no one can sort out what’s going on. She tests negative for essentially everything, so these neurological issues are inexplicable and nearly every one of the issues of this type is incurable and untreatable anyway.
We left his office and the drive home was a difficult one for me. I sent a sort of numb text to Michael with the “there’s nothing more we can do” news and spent the next few minutes letting that really settle over me.
How can everything we’re doing still not be enough to make a difference? With autism, with these neurological issues, with the OCD and the feeding issues and the sleep disorders. Why must this tiny beautiful soul be stuck in such a difficult body?
The thousands of hours we’ve spent doing therapy and the thousands more we’ve spent doing our best to sort through difficult days and nights sometimes just feel like so, so, so much to handle.
There are times when the fact that we can’t go to the park, or pool, or a friend’s house, or to dinner, or shopping, or even to church in a typical way feels like so much to face, let alone anything big like a holiday celebration, or a family get-together, or a vacation. The daily struggle to eat, sleep, dress, and bathe Sophie is such a battle. The fact that I literally don’t know if I will ever sleep through the night again in my life sometimes feels heavy to bear.
And, on that drive home from the pediatric neurologist with Disney songs (but only the safe 3) on repeat in the backseat, it felt hard. I felt defeated and beaten, and like no matter how many hours of research I do, or dollars we spend, or therapy we diligently practice, or methods we try would make a difference. I’ve never expected to “cure” autism. My goal on this road is to help Sophie be as free and in control of her own body as she’s capable. I want to provide her with the opportunities she needs to live, learn, and love the way she can. To speak, to play, and move the best she can.
We climbed out of the car and I started making dinner while Sophie and Milo played in the living room. In the safety of the kitchen, I put my sweet potatoes into the oven, sat down on the kitchen floor, and just let all the sobs out that I didn’t realize I’d been holding in for so long. A mess of swollen eyes and blotchy skin, I was just starting to pull myself back together when Milo toddled into the kitchen. Confused (I think this is the first time he’s seen me cry since he was a newborn), he asked “Mama? What are you doing? What’s wrong?”
Lost for words, I responded simply, “my heart feels sad. I’m crying a little.”
Without a word, he climbed into my lap, wrapped his chubby arms around me and buried his head into my neck. He squeezed me tight and said, “Mama. I love you so, so, so much.”
Of course, this made me start crying all over again, but I squeezed him back and thanked him. He held on for a few more seconds, kissed me a few times to be sure I was all right and ran back to play, but it was just what I needed.
You know what? This? All of this? It’s a lot. It’s not the hardest lot in life (heaven knows there are SO many who have it so much harder and more difficult than I do), but it’s okay that it feels like a lot sometimes. It is for me.
As we have every step of the way, we will keep putting one foot in front of the other. What we have to give Sophie may not ever be enough to change things for her as much as we’d like to. But it’s enough. We’re doing small things with great love.
It’s all we have to give.
Which is so, so, so much.
Megan says
August 14, 2015 at 7:14 amI had a roommate once with a severely handicapped older sister. I’d like to point out one thing that you might not have picked up on in recent days — having Sophie for a big sister is also teaching Milo a lot about empathy and kindness and consideration for others, as evidenced by his comforting you in the kitchen.
And in the meantime, I will keep reading and sending you well wishes for strength to help Sophie and serenity to accept when sometimes there’s nothing more you can do!
Tammi says
July 4, 2016 at 11:58 amMegan has hit this on the head. Sophie and Milo are lucky to have one another. As a parent of an autistic child I see the bond my boys have that is forever different than any other neuro-typical sibling bond, at least that’s my belief. Yes, its been hard, yes I’ve cried and yes, I’ve laughed and hugged too. It’s been a long road and just know that one day you will see the benefits of your hard work and commitment to her and them. It’s hard. It’s certainly not how we expected life to turn out. When it comes down to it I keep thinking about what my youngest said when asked, “Who inspires you the most?” and he says, “My older brother” (the one with autism). Then when asked, “Who do you think you inspire?” and he says, “My older brother.” They are a team. Yes siblings but sometimes I think they connect in such a unique way I will never understand. Different than the sibling bonds I forged that’s for sure.
Good luck and well wishes.
-Tammi
Emily says
July 4, 2016 at 2:13 pmTammi – Beautifully said. Thank you for this!
Bets says
August 14, 2015 at 7:18 amSophie and Milo are lucky to have a mom who cares so deeply for them and loves them exactly how they need to be loved. Thank you for sharing your story. As always, sending good thoughts and prayers your way.
elisabeth says
August 14, 2015 at 7:19 amI’m bawling. And like nearly every day, I’m ready to pack my bags and move next door. Just so I could hug you and tell you the same thing every day. Because it’s true. I love you so, so, so much. And would do just about anything to ease these burdens for you all. You’re amazing and so loved and admired. We’ll just keep praying. A lot.
Shelley says
August 14, 2015 at 9:52 amPretty sure Elisabeth just stole the words right out of my mouth. Can hardly see what I’m typing through the tears. You are so so loved and thought about and prayed for.
Melissa says
August 14, 2015 at 7:23 amIt is a lot. For all of you. I’m so grateful you have each other, it’s such a blessing that Milo is on board too. Love and hugs! (And prayers for solutions and sleep.)
Emily says
August 14, 2015 at 7:40 amThis post was so beautiful and real, and portrays only a peek im sure of what life with autism is like. Your beautiful Sophie is so special and you as her mama are so special. Looking for small tender mercies like Milo giving you extra love when you needed it is all you need and should do. And you always do…you’ve got such a positive and perfect outlook, even though I am sure it is hard to do at times. Thanks for being such a wonderful example to me of that. I love reading about your beautiful children and your lovely life 🙂 hang in there mama! You’re doing great ♡
Lynda Davis says
August 14, 2015 at 8:09 amWe have a grandson who has been diagnosed with autism. He’ turning 3 years old soon. So, we’ve watched our son and his wife go through many of the same things that you have. It’s so challenging, but it’s changing who they are and they have become so much more compassionate, loving, and faithful–just like you have. May God bless you and your family! I love you Emily!
Jenny says
August 14, 2015 at 8:11 amThank-you for sharing something so personal to you and your family! You are the best mom for Sophie and milo and give them all that you can! I pray God gives you peace along the journey!
Kristi says
August 14, 2015 at 8:59 amBeautiful words from your beautiful momma heart. You seem to handle your and Sophie’s lot in life with such grace. Thank you for being open and honest. Hang in there and like you say, just one step at a time you will continue to be the great mother and wife you are.
Melanie S says
August 14, 2015 at 9:13 amA good therapeutic cry is good for the soul. We joke that we have two kids with autoimmune disorders and Sheldon Cooper because it’s easier for friends to understand and I like to keep my heart guarded on how hard it is. I do have a couple friends that know what it’s really like and they all are my Milo’s when I need it. Just consider all us readers an extension of that too.
I am speaking in November at our local moms group about raising kids that have different needs. I’m thinking of focusing on being your child’s advocate and love that you understand that sometimes it means no more of something too. I’ll keep you all in our prayers and that you continue to find peace in the small things with great love.
katie w says
August 14, 2015 at 9:17 amYou are amazing. Your family is beautiful, thank you for sharing bits of them with us! Sending good thoughts your way.
Jessica says
August 14, 2015 at 9:44 amYou have so many of us in awe. From diet changes to therapy to schedules and all the struggles that come with a child that has special needs… you are one of the lights I look to for inspiration. Sophie and Milo are two lucky kids to have such a dedicated, strong, capable mother watching over them. We are rooting for you guys! I know we aren’t the only ones… that goes for both sides of the veil. You are loved!!!
Sharlee says
August 14, 2015 at 9:47 amOh, Emily– I feel it. Thank you for making me feel o.k. about feeling how hard it is sometimes. Your thoughts and words and photos are a beautiful reminder that the little things we do are in reality big things–the biggest things and most important things we can do. You are the best. One day at a time (or an hour at a time)–that’s how we have to do it. Sending my love!
Aunt Lisa says
August 14, 2015 at 10:01 amMy goodness. I’m a mess. And in awe. You’re my hero. You’re doing an amazing job, Emily. Sophie and Milo are more than lucky to have you as a mom.
Hilary says
August 14, 2015 at 10:55 amHugs, more hugs, prayers, and good vibes mama!!
Cory says
August 14, 2015 at 2:33 pmI highly recommend the book Brain on Fire. She’s so blessed to have you as her mama.
Ellen says
August 15, 2015 at 7:12 am“Doing small things with great love” – what a great philosophy for a purposeful life. Thanks for saying that.
Best wishes to you and your DH, your beautiful Sophie and irrepressible Milo!
Marcia Christiansen says
August 17, 2015 at 1:03 pmHi, Emily. I read your honest, sincere, loving, and tender writings about Sophie. I certainly am thinking of beautiful Sophie and your family. A lot! It is a very challenging path. I work with children with this diagnosis as a Speech/Language Pathologist and feel deeply for parents as they deal with this diagnosis and what it entails for their cherished child and the family. My heart is with you all! Marcia Christiansen
Shanna says
August 19, 2015 at 5:13 pmOh, mama.
You’re right – it IS a lot. It’s okay to break down sometimes and be honest about your struggles, just like you’ve done here. I can only imagine what an affirming balm that will be to another weary mom’s soul.
And what a trooper you are, giving your girl everything you possibly can.
So much love to you. Will be praying for you and Sophie, and I’m not just saying that. I’m so thankful we have a Savior who will carry our loads for us, because some things are just too much to bear.
Kendall says
September 19, 2015 at 8:45 pmYou have a lovely blog and a lovely family. I came here to read your red cabbage recipe and ended up staying for quite a while. You helped me with a lovely rotkohl recipe, so I’d like to help you with a tip.
Please look up the documentaries “Weed” and “Weed 2” on YouTube. They are from Dr. Sanjay Gupta (CNN’s chief medical correspondent), and they talk about the uses of low THC medical marijuana for children with neurological disorders such as seizure disorder. Many people’s first reaction to the thought of medical marijuana is that it’s an excuse for people to get high, but this perception is so very unfortunate – and inaccurate. Low THC, high CBD marijuana does not make anyone ‘high’, but has an amazing ability to regulate some patients’ nervous systems.
You can also type in keywords “Charlotte’s Web” to find a very special strain of low THC product that literally transformed a child named Charlotte who has a very rare and intractable form of epilepsy called Dravet Syndrome. I have a relative with this condition, and I would not have believed the transformation had I not seen it on “Weed”. Similar strains work for others with different conditions besides Dravet (which, by the way, I’m quite certain, your daughter doesn’t have – although I’m no expert).
I wish you and your beautiful family the very best.
-Kendall
Brittany says
January 12, 2016 at 11:42 pmWow. I think I just read a blog post that I could have written myself. Amazing how the world of Autism can bring people together and we can feel so connected. I think a big reason why is because no matter how hard you try (I stopped trying a long time ago), you can’t ever really explain what it’s REALLY like. You just can’t. But, I can tell you that I know exactly how you feel. Our little guy Drake— we will go to the ends of the earth for. I hope it’s enough. And his little brother Beau… well, let’s just say I know Heavenly Father perfectly plans our families out.
Emily says
January 13, 2016 at 7:34 amYou are so right. There is no way to really REALLY explain it to someone else. But I’m so grateful for that special connection we have in this little community to just get it. All the very best to you, Drake, and Beau!
Denise Ouellette says
March 20, 2017 at 3:49 pmHi
My grand daughter has been diagnosed with autism. Valerie will be 3 years old in the spring. My son
Mike said that Valerie had her first ear infection when she was 9 months. It took 2 rounds of antibiotics to get rid of it and after that Angie noticed that her development slowed down. She has had several ear infections since then and ever time she takes these antibiotics her behavior changes and it takes a couple weeks for her to settle down and get back to normal. Apparently they are linking these antibiotics to an imbalance in your stomach acids which can leak toxins to the brain and slow down development.
Here is the link that Mike & Angie asked us to watch.
http://treatautism.ca/
This is the doctor they went to see last week…
https://www.youtube.com/watch?v=Y3NKG4qtWyk
Please email me if you want more information about this. Maybe this will help your daughter
Emily says
March 20, 2017 at 4:22 pmThanks Denise! We’ve worked a lot on leaky gut in the last few years and we’re finally on top of it! She’s certainly not “cured” by any means, but her health and function are both SO SO much better than they were a few years ago!