This post is the ninth in the series “Homemade Mother of the Week.” If you know a woman who is thoughtfully sharing her passion for the planet, families or the well-being of others, please nominate her for this special recognition. Send an email with all the details to firstname.lastname@example.org
I am so pleased to introduce you to fellow mom Rachel Sepe. I first heard about Rachel and her family from my sister several months ago when she forwarded me an article about Rachel’s 13 month old daughter Scarlett. Diagnosed with Spinal Muscular Atrophy (SMA) at the age of 7 months, Scarlett has bravely battled the progressive disease despite rapid regression. SMA affects the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing, so its becoming harder for Scarlett to play with the toys she loves and feed herself (something an independent 1 year old likes to do!). Through it all, Scarlett’s family and community are there.
Rachel and I have chatted on the phone and emailed back and forth. We have plenty in common – she lives in my hometown, and she also has three kids. She is such a cool woman and so motivated to do whatever she can to help Scarlett live a peaceful and happy life. “I truly hope someone out there has answers for me or can help us in someway. The more people that hear about Scarlett the better chance we have of getting her the help she needs,” says Rachel. I am in awe of her fierce determination!
I hope the Homemade Mothering community will rally around Scarlett. If you can, send prayers, warm thoughts, a donation or dinner. You can read more about Rachel and her family on their blog: http://wishesforscarlett.com/blog
Homemade Mothering: Thanks so much for taking the time to chat, Rachel. I know you are extremely busy! To start us off, tell me a little bit about yourself and your family.
Rachel Sepe: I grew up all over the Midwest, but settled in Cary, IL when I was 12. I met my husband, Michael, who grew up in Chicago, after college. I started teaching at Hough Street Elementary School in Barrington 12 years ago. I fell in love with the tight knit community and the hometown feel of Barrington so 5 years ago we bought a house in “The Village” which is the downtown portion of Barrington. I couldn’t imagine living anywhere else!
HM: What is SMA? How is it diagnosed?
RS: Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. SMA affects muscles throughout the body, although the proximal muscles are often most severely affected. Weakness in the legs is generally greater than in the arms. Feeding and swallowing can be affected. Involvement of respiratory muscles can lead to an increased tendency for pneumonia and other lung problems. Intellectual activity is normal and it is often observed that patients with SMA are unusually bright and sociable. SMA is diagnosed primarily through a blood test, which looks for the presence or absence of the SMN1 gene, in conjunction with a suggestive history and physical examination. SMA is a medically terminal illness and we pray daily that a cure is found for Scarlett.
HM: What is a typical day like for you and your busy family?
RS: Our day begins at 6:00 with getting all the kids up and ready for school/day care. We are out the door, fed and dressed by 7:30. Isabella is in first grade and my son, Gavin, splits his time between preschool and a babysitter. Scarlett goes to an in-home babysitter. I teach fourth grade during the day. After school we have to balance activities such as ballet, soccer, and church. Scarlett also has OT, PT, and water therapy. We then make our way home for dinner, homework, and baths. After the kids go to bed it is time to catch up and get household chores done. It is challenging as a mom to do this on my own since Michael’s job requires long hours. Our days are hectic and fast moving. I long for our life to be simplified!
HM: What has been the biggest challenge since Scarlett’s diagnosis?
RS: The biggest challenge is managing a child with special needs while trying to maintain a normal life for the other two children in addition to balancing a full time job. There are not enough hours in the day. Additionally, we find the medical and insurance world to be frustrating. There are varying opinions and so many insurance regulations that often we can’t provide Scarlett with what she needs. We are trying to find a way to renovate our home for her 300 pound power wheelchair that will be coming in the months ahead. SMA is a consuming condition that dictates much of our day to day life. We are hoping that as time goes on, we can find a way to make it a part of our lives and try to be a normal family again.
HM: Any pleasant surprises since the diagnosis?
RS: I am in awe over our community. They have been incredibly supportive of our family and Scarlett. They are working hard to raise money for us and try to provide meals and support when needed. Our town is our family and we wouldn’t be where we are today without them. We are also so touched by the kindness of so many strangers who are affected by Scarlett’s story. Her condition has helped people to find their talents and use them to help Scarlett. People are more thankful for what they have and realize they have so much to give. I love that through a tragedy, so many are rising up to do good!
HM: What is Scarlett’s personality like? What are her likes and dislikes?
RS: Scarlett is a sweet but feisty 13 month old. She is loving and curious, but so frustrated by her condition. She wants to move, be free to explore, and be able to do what 13 month olds do. But, she is trapped in a body that doesn’t work. She loves music and singing. She enjoys reading and being outside. Scarlett also likes to stack and nest cups. Scarlett dislikes being around a lot of people and loud noises. She understands that she is helpless in many ways so she is uncertain of people touching her or of places that are crowded. We hope to be able to find a way to provide developmental therapy for her so we can begin to teach her about the world in her own way. She is very smart and loves to babble and talk.
HM: How have your older children been impacted by Scarlett’s diagnosis? How have they helped?
RS: Watching our older children struggle with this diagnosis has been painful. Their lives are upside down and the childhood they had has changed in many ways. Isabella has had to grow up quickly and learn to help. She also has had to learn what a chronic illness is and has questions we can’t answer like “Why Scarlett?” She has become cautious and sad at times. We wish she could be carefree like her friends. Gavin, being 3, doesn’t really understand what is going on, but he knows that the revolving door of help and doctors isn’t normal. He won’t play anymore and prefers to be by my side at all times. He still loves school and being with friends, but there is an innocence that is gone in his eyes. Everyone tells me that they will be better for having Scarlett and that when they are older they will be the most compassionate people. We pray that is true because it is heartbreaking to see how impacted they are by SMA.
HM: What is one wish you have your beautiful Scarlett?
RS: We have so many wishes! We wish that SMA doesn’t get to define who she is. We wish that we can provide her with any equipment or support our specialists feel necessary. We also wish that we get to have her in our lives for many, many years to come!
HM: My readers love trying out new recipes – can you share one of your family’s favorites?
RS: Since Scarlett’s diagnosis, I haven’t cooked a meal. We have relied on friends to bring dinner and quick options from Trader Joes. Before learning about Scarlett’s condition, one of my kids’ favorite meals was Taco Stuffed Shells:
Brown 1 lb. of lean ground turkey and add your favorite taco seasonings. Once cooked, add a can of black beans and a handful or two of shredded cheese. While the taco meat is browning, boil a box of stuffed shells. Then, fill the shells with the turkey/bean/cheese mixture. Place in a baking dish and cover with your favorite salsa (I like to use a corn/black bean) and more shredded cheese. Bake at 350 degrees for 20 minutes. Garnish with avocado.
Scarlett will require a lifetime of specialized care from doctors, her parents, family, and friends. Hope lies in research currently under way to find treatments and a cure.
A Special Needs Trust has been established for Scarlett that is managed by a Trustee. These funds will go directly to her for medical expenses, health care, and equipment that is not supported by insurance.
Support Rachel, Scarlett and the rest of their lovely family on Facebook: http://www.facebook.com/pages/Wishes-for-Scarlett/182231591882337
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