Susan Deal

@susan-deal | contributor
At 4 months old, following seizures and an MRI, we were told Adelyn would never progress and given 2-8 years, but she is a fighter!
Community Voices

I Love My Daughter’s Scars

One day my now 18-month old daughter will probably hate her scars. I imagine her teenage self standing in front of the mirror trying on a bikini, wishing for smooth skin where there is instead a cut on her belly from not one but three surgeries that saved her life, the puckered scar tissue underneath becoming a bit more pronounced with each one. I will remind her that her scars aren’t a sign of brokenness — in fact, quite the opposite. They tell the story of someone who is whole again. I will teach her that they are a reminder that her journey has been tough, the fight hasn’t even always been fair, and they are proof that she is a warrior and she is here. As many times as she needs to hear it, I will be there to say it again. To tell her the story of a tiny baby who fought for her life and won.  And I hope that one day she learns to love her scars as much as her mama does.

Susan Deal

To My Daughter With Leukodystrophy on Your First Birthday

Dear Adelyn, Oh baby girl, what a year we have had. It’s the eve of your first birthday, and here we sit, ready to spend that special day in the hospital tomorrow, of all places. I’ve got tears in my eyes, but they aren’t for the reasons you might think. I’m not feeling sad we’re in the hospital, and I’m not sad because of the challenges you have faced. No, tonight I’m a mom like every other, and I believe these tears are a bit of a right of passage on first birthdays. My heart explodes with joy and the happy tears flow as I reflect on this past year and wonder how the time has gone by so fast. Just 365 days ago I went to bed with you in my belly, knowing the next day I would hold you in my arms. Nervous anticipation and aching hips kept me awake while I knew I should sleep. Poor me, I had no idea what was coming. I had no idea how your fingers would feel curled around mine. I had no idea how precious it would be to cuddle your warmth in the night, just the two of us, during your night feedings. How you would play with your hair to soothe yourself. How you would belly laugh at our silly voices. How you would calm to any song and try to sing along. How you would love the feel of your hands on daddy’s hair. Or the way you would smile up at me with big wide eyes like I was your world. I didn’t know you would be such a hard working baby, never giving up in your effort to reach new milestones. I didn’t know you would look so cute while sucking your sweet little thumb. Or how it would feel when you bury your head in my shoulder for comfort that only your mommy can give. I had no idea how big my heart could swell. I had no idea how the love of our whole big tribe would grow for you. Yes, poor me. I didn’t know you yet. This has been the best year of my life. Happy birthday, baby. I love you so much, and I can only imagine what I will come to learn and love about you in the next year. You are beautiful. You are perfect. Love,Mama This post was originally published on Let’s Make a Little Deal. We want to hear your story. Become a Mighty contributor here . Getty Images photo via Nadezhda1906

Susan Deal

Finding Hope After Defeat and Preparing to Break Down Doors

Following seizures and an MRI, our daughter was given an early diagnosis of leukodystrophy, a terminal brain disorder. We applied to participate in a study of DNA related to leukodystrophy at CHOP, and had to wait a few weeks for their team to review her MRI and clinical notes from our local hospital before being enrolled in the study. After what felt like an eternity, we finally found out we got into the study! We had prayed for this, our tribe had prayed for this, and we got in. Such joyous news… but it came bittersweet. About two weeks prior, I got a phone call from the contact person with the study. They told me that they were “tentatively” accepting us — but there was a condition. The doctor saw something in the MRI that made her suspicious of a possible misdiagnosis — she thought the white matter abnormalities may have been caused by a virus called CMV.  I could have had it while pregnant, and it has mild flu-like symptoms. This can be tested with a simple blood test, and while it is still brain damage, it is not progressive and not fatal. I don’t know if I cried harder the day we got her diagnosis or after that phone call, all at the thought of the possibility of hope — of a miracle. And so our prayers changed, and we pleaded for this to be true. We started researching, and so many of her symptoms aligned with CMV. I knew this was it… I mean really, truly knew it. We got Adelyn’s blood drawn and started the wait for the results. And we didn’t tell anyone. Because hope is so good, but it’s also pretty damn scary. We got the results about a week later that Adelyn tested negative for CMV. And with that, we were in the study. I was crushed. I felt like I had finally started to find my strength before, and now I was suddenly back to the teeny tiny person I was a month ago. Being in the study was exactly what we thought we wanted. This should have been good news — and it was — but it didn’t bring the elation we expected. I’ve had a lot of people telling me I’m strong lately — but I’m just as strong and as weak as all of us are in times of adversity. In this moment, I was weak. And I was sad. And I was angry. And in my weakness, tiny me yelled to Mike, “ This. This is why I didn’t want to have hope. This is what I was afraid of. It hurts so much. All. Over. Again.” But the crux of it is this — you can’t not have hope. There are risks in having hope, but the risks of losing hope are so much greater. And Mike reminded me that hope is a lot like love. Opening yourself up to it makes you vulnerable, but if you don’t, there is so so much beauty and wonder you will miss out on. Do not be afraid — I am with you! I am your God — let nothing terrify you! I will make you strong and help you; I will protect you and save you. (Isaiah 41:10) And I have to say, the hope I let enter me… it crushed me in the moment, yes, but it also changed me. I’m embarrassed to admit I had taken defeat with our initial diagnosis. Yes, I love her. Yes, I will do anything to help her and protect her. But she has leukodystrophy, and it is progressive, and it is fatal. That’s it. When we told our Pastor the news of her diagnosis and asked for prayers from the church, his response included these words: “We will be sure to celebrate the gift she has been, the gift that she is, and the gift she always will be — leukodystrophy be damned. Nothing will ever change the fact that Adelyn is a beloved child of God.” I was touched at his words, and cried reading them. But I wasn’t quite ready for them yet. Because at the time, leukodystrophy had damned me — not the other way around. I think I needed that moment of “false” hope to remind me I need to have hope. Leukodystrophy only damns me as much as I let it. We decide what controls our lives. We decide what actions to take day in and day out. We decide what thoughts we choose to entertain. And now I’m ready. Leukodystrophy be damned. And as long as we remember that we have the power to control how we react to our own personal plights, we will always win. The outcome doesn’t affect that truth. Maybe she’ll beat the odds, and maybe she won’t, but we will give her the best life imaginable. And we will fight with every ounce of our willpower, and we will think positive thoughts. And in that… We. Will. Win. We will seek new treatments, explore every avenue that is open to us, and find the ones that are closed and break down the doors. I don’t know what the outcome will be. I don’t know what her future — our future — looks like. But I have hope. This post was originally published on Let’s Make a Little Deal. We want to hear your story. Become a Mighty contributor here . Getty Images photo by Andrii Oleksiienko

Susan Deal

We’ll Get Through This Together

Where do I begin? How does a mom write this kind of post? We’ve been able to fill most of our friends and family in at this point, but I guess I’ll start with the story of what got us here: A few weeks ago, Adelyn had a brief “twitching”episode — maybe five seconds — when waking from a nap. About a week later, another. A week later, one more. We knew it was odd and immediately started Googling information on the topic — it seemed to fit the description of something similar to the hiccups; harmless. I brought it up at her 4 month well-check, just to be sure. The pediatrician agreed it was likely nothing to get worked up about, but wanted us to follow up with a neurologist to rule out anything more serious. We had an appointment scheduled for Tuesday. On Sunday, she had another “episode” in the morning. This one lasted much longer (one to one and a half minutes) and was more intense. Something wasn’t right. I realized how glad I was we had made the neurology appointment, and was even able to get a video, so I felt good the video would be able to help with a diagnosis. That night, we put Adelyn to bed. I happened to glance down at the monitor after she had fallen asleep and see it was happening again — this time there was no question it was a seizure. We threw some clothes in a bag in case we got admitted overnight and headed to the hospital. We spent four nights and five miserable days there. Our poor baby was hooked up to a 48-hour EEG to monitor her brain activity. The “pack” holding the wires was so heavy she couldn’t hold her head up without support. We met nurses, and techs, and pediatricians, and neurologists, and an ophthalmologist and the list could probably go on. Initially, the EEG results were coming back OK. On Wednesday, she had an MRI. She had to be put under for it so they could make sure she would stay still. That evening, the pediatrician came by and said he had some bad news. The MRI was abnormal. He started talking about white matter and myelin, and getting services to help her, and I had no idea what it meant, but we realized, this isn’t good. The next day they told us the geneticist would be in soon to talk with us — I was confused and my heart was beating in my chest, but I kept my cool. OK, the geneticist, sure, we’ll talk with her. We’re good. We’re cool. They have to cover their bases right? I’m not sure what bases those are — a geneticist? But it’s fine. She’s fine. She’s totally fine. White matter. Leukodystrophy. Tell us your family history. Running tests. Blood work will be sent off. Laboratory. Any questions? Um, no. We’re good. And then they left and we were ready to turn to Google. What was that word she used? Luca? Luko? Ah — I found it! Leukodystrophy — white matter, yes that’s it! Leukodystrophy is a group of rare genetic disorders that affect the white matter of the brain. It is progressive, and the patient will worsen over time. Physical and intellectual abilities will deteriorate. The rate at which this happens depends on the specific disorder within the broad category of leukodystrophy. This disease is fatal. When symptoms present themselves in infancy, that is typically because it is a more severe form. For children diagnosed before they are a year old, average life expectancy is 2-8 years. Thank God Adelyn is asleep right now. I’m crying, sobbing. Mike is crying. We’re holding each other. I’m just so glad she’s asleep, because she shouldn’t see her parents like this. This isn’t us. Not our baby. It’s surreal. And so real. When you hear someone else’s story like this, you always say, “I just can’t even imagine how you must feel.” But really, you sort of can, can’t you? I know I used to, before it was me. Such a deep, unfathomable pain it takes your breath away. What you’re imagining, it’s pretty close to what it is. Here’s the only part you’re missing, or the part I was missing anyway when I used to think I couldn’t imagine what it would feel like: I had no idea how much the joy would hurt. The sadness, the pain of hearing your child has a terminal condition, that part I knew would hurt. But when Adelyn giggles and makes me laugh at her silly coos, it shatters my heart into a million tiny pieces that I’m constantly having to glue back together so I can keep giving her my whole heart, no matter how many times it keeps breaking. Because she deserves to have all of me for as long as I can give myself to her — she’ll never know my heart breaks for her, she’ll never know how many times I’ve glued myself back together. She’ll only know I’m here, and I love her, and I will make myself whole for her. We will keep giggling and laughing and playing. I kept asking Mike when we first got the news, “How are we going to do this?” But we really both already knew the answer. You just do it. There’s no how. We may not always like the hand we’re dealt, but we can do it. There is something that has given me much comfort over the last week. I believe — and have always believed — that God hand picks babies for their mommies. Even people who don’t have a good relationship with their parents, I really believe God had a purpose in putting them together, that they needed each other in some way they may not even ever understand. “Before I formed you in the womb I knew you, before you were born I set you apart.” Jeremiah 1:5. And so, all I can think over and over again, is that God had this beautiful, delicate soul. He loved her so very, very much, and He needed someone to take extra special care of her. He knew it would be hard, and so He searched and searched, and out of all the billions of people in the world, He chose Mike and me to be Adelyn’s mommy and daddy. I believe she belongs to Him more than she even belongs to me, and I am so honored He chose us. I used to thank God for her every night in my prayers, “Thank you for a happy, healthy baby.” Now, my prayer is, “Thank you for Adelyn. Please help her to be healthy and strong. Thank You for sharing her with us, for choosing us. I promise we will take good care of her, we won’t let You down. I know we can do it, with Your help.” And it’s not just us He chose. God chose a support network so strong for Adelyn that I have been blown away. The calls, texts, Facebook messages, visits, flowers, fruit, meals, delivered groceries and pantry items, cookies, meal delivery kit services, matching mommy and me leggings, gift cards, blankets, toys, rosaries, coffee, donuts, cleaning service… I’m sure there’s more I’m missing here too. I’m crying writing this, because it has been so much. You are pouring your love all over us and it is so good and so healing. When I had to tell my dad the news of her diagnosis, he started crying, and through his tears he just kept saying, “OK, baby doll, OK. We’re going to do this together. We’re a family and we’re doing it together.” All of you — every kind thought and prayer sent our way — I just keep hearing, “We’ll get through this together.” Psalm 56:8 says, “You keep track of all my sorrows. You have collected all my tears in Your bottle. You have recorded each one in Your book.” I know so many of you have shed tears for us, with us. Your tears are just as real and raw as our own. And God is collecting them all. Every tear drop is a silent prayer falling down your cheek, and we can’t thank you enough. Our tribe is big and beautiful, and our baby girl is surrounded by so much love. We’ll get through this together. And I hope you never have to go through anything quite like this, but when life throws you a hardship, I hope you know we’ll be with you and we’ll get through that together, too. Follow this journey on Susan’s blog. We want to hear your story. Become a Mighty contributor here .