My name is Kelly Steel and I am married to a wonderful, strong and very handsome man named Mike. We have one daughter Daphne who looks like mommy but gets her incredible strength from her daddy. We live in Massachusetts. Daphne is three and a half and has several diagnoses which all stem from her genetic condition – PTEN Hamartoma Tumor Syndrome. Other diagnoses include but are not limited to; polymicrogyria (unilateral, right frontal lobe), hemimegalencephaly, macrocephaly, global developmental delays, hypotonia, seizure disorder. In addition, she has skin findings (most notable was a linear nevus sebaceous which ran from her forehead to the base of her nose) and tumors (lipomas and collagenous) as well as kidney stones (five total all passed). She was born at 29 weeks and was only two pounds so for the first year of life Daphne battled a lot of illnesses being medically fragile.
Welcome beautiful Kelly & Daphne
Natalie: How did your special needs journey begin? (What was going through your heart & mind during this time)
Kelly: Our journey started months before Daphne was scheduled to come into the world. After 6 and a half months of a healthy pregnancy I went to the Emergency Room due to 24 hours of heartburn that just wouldn’t go away. After a few hours of waiting to hear what was wrong we were admitted due to a diagnosis of preeclampsia. I was told I would be spending the rest of my pregnancy in the hospital but after three days my levels all returned to normal they sent me home on bed rest. Hours later I was calling the on-call physician letting him know that I again did not feel well. He dismissed my concerns since I was fine hours before but once I started vomiting my husband did not hesitate and rushed me back to the ER. They were unable to even get a blood pressure from me since it was so high – so they tell me…I was in so much pain that I had no idea what was going on. I was administered morphine (which to this day still bothers me, I didn’t even take a single Tylenol during my pregnancy).
Hours later they delivered Daphne via emergency C-section. What I suffered from was HELLP Syndrome. I felt weak and had trouble even visiting Daphne’s room in the NICU for long periods of time. They put me to rest but when I awoke I nearly passed out as I went to stand. Mike left to go check on Daphne and a team came to take care of me. Internal bleeding was occurring but they had no idea as to where or why. A second surgery was needed. Simultaneously we were learning (mostly Mike) about some concerns they had with our two-pound little girl. A birthmark (which we both noticed but neither of us said anything about) was a bright white streak across her little red face. They began to scan her whole body thinking that she may have Linear Nevus Sebaceous Syndrome (the type of birthmark she had). Often this syndrome presents with malformations in the body. They found one, her brain. She was way too little for an MRI so Ultra Sounds were all we had to go on.
Instantly we were given so many specialists, all giving us a very quick introduction into what is now our busy medical life. It has taken years and several tests to get us where we are today but that big birthmark across that little baby’s face lead to all of this. I ended up being fine once the second surgery was complete (physically at least) besides it taking a lot of time to heal from two procedures. Mentally I suffer from PTSD due the combination of a near death experience as well as all of my fears and concerns about Daphne. This is the only time I recall seeing my husband cry. To this day I have no idea how he held up as well as he did. He truly is a rock.
Natalie: What is the name of the condition that Daphne has? Can you share with us a little more about it? What are your worries and also hopes & wishes for Daphne?
Kelly: Daphne has PTEN Hamartoma Tumor Syndrome. Our genetics team tells us her presentation of the syndrome is rare, with having only two other children in their literature that sort of match her. She does have some of the commonly seen traits; Macrocephaly (larger than normal head size), developmental delays and lipomas and other skin growths. We have joined on to a research group from Boston Children’s Hospital and hope to learn more as to what makes Daphne’s presentation so different. The doctors there say that our involvement in their research group will be encouraging to newly diagnosed families to see a patient who is developing so well. What is most troubling about this diagnosis is that Daphne has an increased risk of certain cancers, most notably breast, thyroid and endometrium. Although the cancers are not seen typically in children, each of the lumps we find on her bring on new feelings of fear. Most recently there was an unidentifiable lump found in her chest. Once it was removed we learned it was benign, but there is always that worry in the back of your mind. My wishes for Daphne, a cure.
Natalie: What are some lessons and blessings you have learnt since becoming Daphne’s mum?
Kelly: Mike and I always joke that we are such planners that our daughter decided from the start that she was going to change that in us – we would say coming 11 weeks early was a good start. Not that we have quit our planning ways cold turkey but we both are able to live in the moment better than we were ever able to do in the past. For instance, any time I start to think about Daphne in the future I try to stop and think of her now. It really helps us in handling the unknowns about her syndrome.
I have also learned about appreciating and celebrating small victories. Daphne’s developmental delays have caused her to do things at her own speed, not walking on her own until she turned three and currently still not speaking. Every time Daphne does something new my husband and I stop, take notice and applaud her for her efforts. I am so thankful that we have been given this gift.
Natalie: It can be extremely isolating for a Mother going through this journey, and family and friends can struggle with how to best respond. Do you have any advice? What helped you?
Kelly: For family and friends just keep doing your best to teach them about your child’s journey. They may never find a way to accept completely what is going on but maybe that’s okay. In our case our family doesn’t seem to see Daphne as being any different than any other three -year old. They will say things like “Lots of kids just need more time to learn to speak” or “She’ll be able to run when she feels like it”. We know it is so much more than that but they are reminding us that all children do things on their own timeline and to let Daphne be a kid. To feel less isolated, find good support groups. We belong to two Facebook groups (PMGAwarness.org and Hemimegalencephaly group) as well as one group of moms from a respite center that Daphne attended prior to preschool. Even if your children do not share the same issues you can find a great friendship based on the sharing of doctors’ appointments and therapies.
Natalie: How can we help other Mum’s going through similar situations?
Kelly: Keeping their spirits high by being there for them when they need us. Being a cheerleader, a listening ear or a resource. And share your story…there have been so many times that I have read a blog or a Facebook post that has made me feel so much less alone.
Natalie: I’m passionate about the special needs and self care connection. The special needs journey can bring some big challenges, how did you fill your cup during those times? Are there any self care practices that helped you on your journey?
Kelly: I am actively making self-care more of a priority. Since Daphne was born early I had an extended maternity leave, however after returning to work for a few months her frequent illnesses and hospitalizations cause my work to offer me a sabbatical which I gladly took. I tried returning yet again but I struggled to find balance and in the end needed to resign from my position to be home and manage all of Daphne’s medical needs. When I was working, work was my self-care. It allowed my mind to attend to a different task other than Daphne’s medical needs as well as social time with adults. I also squeezed in a walk from time to time at lunch.
Now as a stay at home mom and lead medical organizer for my daughter, self-care is needed even more. I still see my counselor from the NICU, who specializes in treating women with traumatic birth experiences. She introduced me to mindfulness practice. Although I am not an active meditator I do listen to Pod Casts and search Pinterest for quotes and inspirational words that help my mind take ease. My favorite is Sharon Salzberg, she has a great Pod Cast series that provides as much humor as it does inspiration. With her teachings, I am hoping to learn to practice active meditation soon.
I also have recently taken to exercise and I can’t say enough about what it has done for me. I take Barre Belle classes which are a blend of ballet moves with cardio and strength training. Basically, you sweat out your frustrations and for at least a few hours each day it really helps.
Natalie: What pearls of wisdom do you want to share most with Mum’s who are at the beginning of their special needs journey?
Kelly: One of our primary nurses in the NICU told me one day as I sat crying – “this is your baby and you are not going to love her any less because of all of the challenges she is facing”…she was right, I love her more. Being a mom of a special needs child is being full of pride each-and-every day. The smallest accomplishments will make you beam from ear to ear. You will find that you will be blessed to be living in this world and actually smelling the roses instead of not even noticing that they have bloomed. Also, work on having your family be a team. All three of us work together to make each day happen. I feel so blessed to have an amazing squad in this journey.
Natalie: Do you have a favorite quote, prayer, or piece of miracle inspiration that you would like to leave us with?
Kelly: “You never know how strong you are till being strong is the only choice you have” – Bob Marley
Natalie: Thank you Kelly, it’s an honour to share your incredible story. Wow, what huge journey it has been for you all. Such fighting spirits to endure all that you have gone through from the early stages of pregnancy and beyond. You absolutely do have an amazing squad and I love how you all work together to make it possible. Mike sounds like an incredible husband and father. Your story also highlights the importance of self-care in combatting PTSD which so many special needs mothers experience. I met Kelly via the Polymicrogyria FB group that we are both in, grateful for the world wide web, allowing so many of us to connect.
“Being a mom of a special needs child is being full of pride each-and-every day. The smallest accomplishments will make you beam from ear to ear. You will find that you will be blessed to be living in this world and actually smelling the roses instead of not even noticing that they have bloomed”. – Kelly.
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