I mentioned on Friday that Sophie was in the hospital last week. I wanted to share a little update and a few thoughts about it all. I hope you’ll forgive the pause in our regularly scheduled recipe posts.
As part of autism, Sophie often has some odd or quirky behaviors. Sometimes it’s talking only in a high-pitched voice. Sometimes, it’s avoiding eye contact, sometimes it’s repeating actions or phrases or games in exactly the same way. Two weeks ago, Sophie immediately dropped one behavior and adopted two others. They were repetitive and strange. Involuntary. We watched and waited over a few days, but things were progressing and concerning. On the worst day, our ABA therapist recorded how many movements she made, and there were 714 in two hours. It was enough for me to call the pediatrician, who sent us immediately to the children’s hospital ER to check for seizure activity.
We spent 8 hours in the hospital, shuffling from one test to another. We spoke with specialists, ran tests and exams, and took samples. We still don’t really know anything. We’ll speak to the neurologist this week and should get the results of several of the tests back soon. It could be a short road, it could be a long road. Mostly, we’re really, REALLY looking forward to answers.
It was awful and scary and unexpected. I feel like I haven’t slept in weeks. But, it was also another chance to witness miracles.
1. Being told to go the emergency room with a child has happened to me twice. Both times, it’s sent such panic into my heart I think it’s going to burst out of my chest. Sophie was calm and pleasant on the drive over. I prayed the entire drive to be calm for her. When we got to the hospital, we had to park a 5 minute walk away from the ER entrance (if there was EVER a time for valet parking…), and I carried her in the 100-degree heat to the door. As I walked, I felt peace and calm washing over me from head to toe. I knew it was going to be scary and horrible, but I felt peace. Even when the neurologist said there was a 50% chance of it being a certain tumor (that test came back negative, thank goodness), my brain felt terrified, but my body was calm. It was a little moment of divine help, and it got me through an extremely difficult 8 hours.
2. We were sent to a children’s hospital. The staff was all well-acquainted with working with children. There were TVs with favorite shows playing everywhere. There were playthings built into the walls and pictures on the ceilings above the exam tables. There were stickers, and decorated bandaids, and even free toys for after a blood draw. They spoke in soft or silly voices. It was a safe place.
3. Sophie was calm. I cannot begin to tell you what a miracle this was by itself. Last year, during the many tests for diagnosing autism, Sophie was NOT calm. There were lots of screaming, flailing, fighting tantrums that broke my heart to watch and which I was powerless to stop. This visit was almost unnaturally easy. I simply explained to Sophie everything we were doing, and somehow she understood. She understood things I don’t think she would have normally comprehended, but she DID. It was a miracle.
4. Have you ever tried collecting a urine sample from a toddler who isn’t potty trained? When I tried explaining what I needed Sophie to do, she looked right in my eyes and calmly, clearly said “Yes, mama” and did it. Successfully. The first time.
5. When she had to lie on a table for a 20-minute ultrasound, she hardly moved. She answered questions, we talked about what we were doing (“we’re going to put some funny jelly on your tummy and look inside”), she sang the Peanut Butter and Jelly song (“pea-yut, pea-yut buwwer… an jawwy”), and she was calm and cooperative, rolling onto her side, looking up at the ceiling, etc.
6. She didn’t shed a single tear during the blood draw. Our last blood draw involved a full body hold, three attempts at a stick, and horrendous bruising. They numbed her arm using a high-pressure numbing solution right at the stick point, and drew 7 vials of blood. All the while, she lay still on the table with me at her head, holding a little stuffed lamb and watching a little show. Afterward, they gave her a brand new My Little Pony figurine to play with and take home, which she was delighted about, and a princess bandaid , which she was even more excited about. It was a miracle.
7. I only had a few minutes to grab some things and head out the door after our pediatrician told me to take her to the children’s hospital, and I packed for a few hours, not 8. Sophie didn’t complain about being cold, thirsty, or hungry (even when she had to wait an extra 2 hours to eat because of her ultrasound). After our 8 hour stay, we had only used 1 book and 1 toy that I brought. She didn’t need the rest of it. She was calm. It was a miracle.
8. She politely and happily remembered everyone’s name. Like I said, we saw 3 doctors, 8 nurses, and an ultrasound technician. She greeted everyone with a little “hi, Dr. ____” or “thank you ____” or “see you later ___. ” My personal favorite was the ultrasound. There was Chris performing the ultrasound and a student named Bridgett observing. As we left, she swung her legs off the table, gathered her things and said “See ya wayter Dr. Chris! Bye Bridge!”
Where we go now
It breaks my heart in ways I can’t describe to watch this beautiful girl suffer as a prisoner in her own body. I can’t imagine how frustrating it is to try to live and work and play and talk in a body that refuses to cooperate. To know what you want to do and how you want to do it, and not have other people understand or be able to do it yourself. I don’t know why Sophie has to live in this body or if I did something that caused it. But I’m grateful for the moments of clarity when I can see her inside and know that she’s in there. Her clear “yes, mama” from the hospital was one of those moments. I know she’s in there, being brave, and inspires me to be brave just a little bit longer.
It made me grateful for my little village–family, friends, therapists, doctors, specialists, teachers, church friends, and this little community. Thank you for your thoughts, prayers, happy thoughts, well wishes, and willingness to step in and help in any way you can. It means so much to me to know I’m not alone. As dark and hard and scary as some of these experiences are, I have so many wonderful people cheering me on and praying for me.
I wish I could tell you (and myself) what the future holds and what all of this means. We’ll be back to see the neurologist this week, and hopefully we’ll know more then. But in the meantime, we watch and wait and hope.
And, as always, I stand by the belief that God is good, life is hard, and love wins.
Kristin says
September 29, 2014 at 5:37 amThinking of you and your family and wishing you all the best with everything you’re going through. As a mother myself, my heart breaks to read this. You have such an inspirational attitude and perspective!
aimee @ like mother like daughter says
September 29, 2014 at 6:16 amPraying you guys will get the answers you need really soon! I can’t even imagine the stress of it all. You are so brave too, and I’m glad Sophie was brave and strong for you too!
Aunt Kelly says
September 29, 2014 at 6:27 amWe’ve been praying, not knowing exactly what we were praying for (and that’s okay!); so grateful that our prayers are being answered. Thank you for sharing this experience with us and allowing us to see that God *is* good; He hears us and is aware of us. He’s in the details of our lives.
We’ll continue to pray for your peace, for clarity for the doctors and clinicians who are caring for Sweet Sophie and for that very special little girl. We love you all so much.
Thank you to your neighbors and friends who are there to offer you physical support; just thank you.
Jessica says
September 29, 2014 at 7:05 amIn my life I have always said I have faith and said that I trust Him no matter what, but it’s not until trials that we see exactly where we stand and what we are made of. You are amazing and so is she. Use the evidence of god’s hand so far to keep the peace and to help you endure til the answers come:)
Erin says
September 29, 2014 at 7:14 amI am so sorry for all that she (and you) has gone through and I pray for answers as a mom myself I know waiting and wondering can often be the worst part. She is a brave little girl but reading about how you handled the situation it is no wonder she was as calm as she was! You are an incredible source of strength and courage for her. Continued prayers for her!
Lydia says
September 29, 2014 at 7:56 amI love reading your posts and I am so happy your sweet Sophie is handling the experience so well. Sending prayers for quick healing!
Krista Bringhurst says
September 29, 2014 at 7:59 amYou do everything so gracefully, my dear, even if you feel like a mess. Thank goodness for the gospel, huh? How would we survive these heartbreaks without it? Praying for you always.
Melissa says
September 29, 2014 at 9:43 amThose are amazing miracles! It’s good to know that you are being watched over and loved by He who knows best how to comfort you.
We love you and we will be praying for your brave little Sophie!
Mama Lynn says
September 29, 2014 at 9:57 amOur love and prayers continue for your dear family, and sweet daughter. I echo the comments above – yours and others. I know we grow through hardships and challenges. I know sometimes we’d much rather never have to face and endure those challenges.
I am strengthened by your grace, and so, so grateful for a loving Father in Heaven who knows and loves each of His children.
Katie B says
September 29, 2014 at 10:35 amSo many little (big) miracles. Your family is so strong and so wonderful. As I was reading, I was wondering if your experience with your mom has prepared you for the challenges that Sophie faces. Whatever the case, she is so lucky to have you (and Michael and Milo!) and I’m so glad you’re getting some answers. Love to you all and prayers always.
Betsy says
September 29, 2014 at 12:15 pmI am so sorry Sophie has to go through this, I can’t imagine how hard it is to have to watch and wait for answers. I’ll pray they come quickly and in the meantime will continue to send warm thoughts and wishes your family’s way. Sophie and Milo are lucky to have such a strong mom!
Roberta B. says
September 29, 2014 at 12:54 pmI am not a mother, but I honestly have an idea of how frustrated/sad/stressed you must feel. I am sorry. I look forward to your Friday posts every week and thought something must be going on with you and your family.
If you EVER end up relocating to Sioux Falls, SD, there is valet parking at the hospitals in the city and there IS a Children’s Hospital. They are staffed with wonderful people.
You are so brave, courageous and strong – you’ll get where you need/want to be. Keep doing what you’re doing!!
Kari says
September 29, 2014 at 3:35 pmDear Emily, I’m so sorry you and your sweet girl are having to go through this. But I’m pretty sure you are one of the strongest people I know. I am amazed by your faith and strength daily. I hope y’all will get answers quickly. I will be praying for you and your family. Love and miss you!
Madison Ellingson says
September 29, 2014 at 4:02 pmEmily you are so strong and a powerful woman and mother. This brought tears to my eyes and I know if anyone can do it, it’s YOU! Sophie sounds like a charming little girl and I wish so badly to meet her one day!
Jenni says
September 29, 2014 at 6:41 pmWhat a lovely post. I don’t get to comment much but I always read your posts. Its so wonderful that the hospital visit went well and I hope you get good results back.
Melissa Sharp says
September 29, 2014 at 7:30 pmYou are an inspiration Emily. Thank you for sharing. I am so glad that you were able to see so many miracles and that she did so well at the hospital. Prayers for you and your family. I hope that the doctors are able to help shed light.
Alysson says
September 30, 2014 at 9:23 amI’ve been reading your blog since you were pregnant with Milo (I was also pregnant with our family’s little brother), and I just wanted to let you know that we are thinking of you. It is amazing how these littles know when to step up their game and deliver a little grace to their parents. Sending wishes for quick answers for you all.
Rosala Jensen says
September 30, 2014 at 11:26 amThe Gift of the Holy Ghost IS a Gift, and the Comforter really does Comfort! We don’t always realize what a power source we have access to! It’s there to be tapped when needed and I think the angels rejoice when we use it! Bless you!!
Melissa @ Bless this Mess says
September 30, 2014 at 12:26 pmLove and prayers. I’m such a believer in miracles and am so pleased you take the time to see them in your life. No need to be big and grand but small and simple that make life easier and happier. I like you. M.
Becky @ lovetobeinthekitchen says
September 30, 2014 at 7:48 pmI’m so sorry for this hard moment in your lives. I hope you find answers. I can’t believe all the little miracles you had though. That’s really great she responded so well to so many difficult situations. Praying for you guys!
Jen Rollins says
October 3, 2014 at 10:50 amAll I can say is “Wow!” I feel and am uplifted by your expression of faith, and awed by your continued courage. A prophet of God was quoted as saying, “Life by the yard is hard, but by the inch it’s a cinch.” I find myself repeating this often–and it strengthens me to see you living it, inch by inch. Our prayers continue with you. I, too, believe God is good, even–no especially–in the hard times!