Caring for Stella

I've thought about sharing my {short version} story of Stella for some time. Maybe it will help those going through a similar thing (a disabled child is a lot harder to take care of than I ever thought it would be...). Maybe it will help others have more understanding of what others go through. Maybe I just needed to write some of my experiences down.

A little over 4 years ago I had a 20 week ultrasound for my third child. I'm always excited but a little nervous for these ultrasounds.  You never know what you'll find. Good or bad. When I saw the tech remeasure and look at an area multiple times over I started to get nervous. I've seen a lot of ultrasounds done working as an RN, but I’m still pretty clueless about them. They don't make much more sense to me than the average person. I took a few deep breaths and told myself not to worry.

And then the tech said my midwife needed to meet with me.

I was pretty nervous waiting in the room for the midwife to come. No one wants to be told something is wrong with their child. It's on most parents' worst top three list. I was by myself. I wish I'd organized better to try to get my husband there.

The next several minutes the midwife talked to me about some abnormalities that were found in my baby's brain during the ultrasound. She emphasized that it was possible she would be intellectually disabled, among other things. To my surprise I was totally calm. Now, I'm not a break into tears or freak out over things kind of person. But this was a little intense to hear, even for me. But I was calm. Completely. My midwife actually said to me 'I don't think you understand'. But I did. I totally did. It's just that in that moment the Holy Ghost was filling me with peace. He was giving me reassurance. He was letting me know that this was the right path for my child, for me, for my family. That everything was as it was suppose to be and that everything was going to be OK.

I'd like to stay that I continued to feel that calm from then on. But I am only human. The calm lasted throughout that day. When I woke up that next day I felt like it was the Day of Every Extreme Emotion Ever Felt. I was emotionally all over the place. Some good. Some bad. All. Over. The. Place. But the following day I began to feel a bit better. Not perfect, but more like myself.

I followed up with perinatology frequently the rest of my pregnancy. They had to watch various things. They thought there was a chance we'd have to do an emergency c-section so they could do emergency surgery on my daughter. It was a bit nerve racking, but like I said, I'm usually pretty calm and I thought I felt pretty calm.

I say thought because after my daughter, Stella, was born--and she was born relatively healthy--I felt a huge weight leave me. I hadn't known it was there. But it was. I had fooled myself.

Even though stella appeared healthy when she was born, and I was totally relieved she didn't have any huge, obvious problems, I still knew that her health was a bit unknown.  I always hold my babies a lot, but with stella I didn't want to put her down at all the first few weeks. It wasn't a frantic --she's not going to be ok if I put her down-- kind of thing that some people experience (although she gagged a lot on her saliva and that did freaked me out), it was a 'I'm so happy to have this angel in my life and in my arms and I feel such joy to hold her'.

Several days after Stella was born she had some ultrasounds, then she had an MRI. She saw some specialists.  Eventually she had tests and more tests and then some more tests. She had lots of lab draws and a muscle biopsy and genetic tests and an EMG and chronic ear infections and reflux and hearing aids and orthotics and horrible vomiting that would happen multiple nights a week for hours at a time (for years...). And oh the constipation! Because of her hypotonic and weak muscles, eating and pooping was far from easy.

She was too weak to move very much.  And to make things more complicated, she lacked the cognitive curiosity, perseverance, and attention span to learn much. It was endless hours of physical therapy and speech and occupational therapy and very little progress. And I felt such guilt. I pushed and pushed her. I felt like I had to, but I felt bad for doing it. She cried and resisted and it was torture for the two of us. Everything was so hard for her to do. She had no desire do it and it was so hard to do so why would she even try? At the same time, I always felt like I wasn't doing enough or doing the right things for her. I still feel like this to an extent. I think most parents feel like this with their children in one way or another but when you have a child that needs so much from you it is intensified.

She made almost no sound the first 5 months. The few sounds she made were super quiet, like a premature child. By 18 months her cry was what you'd expect, but she still barely made any other sounds. While she could sit well, she was still not really moving around. Rolling was almost impossible for her. Cognitively she was very behind. This was especially hard for me. I have always played with and read to and taught my children throughout the day. I love doing this. But stella didn't respond at all. It was like working with an inanimate object. Actually, harder than that, because she was so discontent. She didn't understand play or toys (even newborn toys) and she wasn't happy to be read to or played with. You could sing or dance with her for a few minutes but then she was discontent. The happiest she would be was when I was holding her and moving and out in a public place with lots of people around. But that wasn't practical to do much of the time, especially with 2 other children. It was like she was going through an 18 month long Wonder Week. Her brain myelination and development was all over the place and I can't help but wonder if that was some of the problem--her world was utter chaos to her. And then there were her ears and her gut and who knows what else was bothering her. It was stressful and hard and overwhelming much of the time. I kept my chin up like I tend to do with most things, but I often felt like I was drowning. And I definitely felt depressed at times. My absence from this blog was not coincidental.

A little before she turned 2 she suddenly moved from her tummy to a sitting position. It was on Christmas Day and it was a Christmas Miracle. Do you believe in miracles? I do. She had never moved much before this because it was so hard for her to do and because she had zero desire to do it. But suddenly she did and suddenly she had that small seed of desire to try to do more!

Progress was slow after this, but there was progress!  She babbled more. She moved around more. She started crawling! She had moments of curiosity and a strong desire to interact with others. Things were getting so much easier for her and for me. And of course, indirectly, for our whole family.

We kept up the therapies. We kept up all the work. I had another baby. We moved across the country to Florida when baby Nora was 3 months old and Stella was 2.5 years old. We had to start all over again with finding doctors and therapist and insurance (triple ugh) and that was the worst! But we found some amazing therapist, some great doctors (but they still don't have any answers for us...) and our darling girl has continued to grow every day.

She has really blossomed the last several month. And she is so happy! Above all else I am so relieved that she is so happy! She is almost 4 and is walking and saying a few words and signing and starting AAC.  She loves to laugh and to dance and to eat lasagna and yogurt. She follows her little sister around everywhere and gives out hugs in the dozens everyday and waves to anyone who passes her by. She's got spunk and is feisty like you wouldn't believe. And she's so healthy compared to how she could be. She still requires an unbelievable amount of time and energy to look after. It's still really stressful to not know what disease she has or what to expect from her for the rest of her life. And I admit it's hard to see her little sister start to do things that Stella can't. But she has blessed us and tested us and helped us grow in so many ways. We wouldn't be the same without her and I couldn't imagine our lives without her.

People, complete strangers, often tell the smiling, waving Stella that she looks like an angel. And you know what, I wouldn't be surprised if she really does have her own flock of angels helping her every {hard} step of the way.


  1. What a beautiful post, Stella is adorable and she's lucky to have such a wonderful mom! I'm sorry about all the struggles you've had to face so far but it sounds like she's turned a corner and there's so much to look forward to now.