Our next piece is named after Alaa Rahme who has an 8-year-old son with Angelman Syndrome. When Alaa was asked about her initial thoughts about her son’s diagnosis, she explained that she went through many stages. First she felt relief - AK was her third child and she sensed even at a few weeks old that something was “off.” He was hospitalized for “failure to thrive” at two months old, and after 6 months of being tube fed, he continued to constantly get sick and to miss major milestones. She insisted and pleaded with many doctors that there was something “off” and they attributed the delays to his weakened immune system. Finally, weeks before her son's first birthday, an atypical seizure triggered a doctor to genetically test him for Angelman Syndrome. When she looked up this rare syndrome she FINALLY found answers to all her questions, and knowing what to expect in a way helped her figure out how to move forward. Sadness hit immediately after relief. There is definitely a sense of mourning that follows such a diagnosis. Alaa began to mourn the child she “thought” he was, the future she dreamed for her child, she felt like that mourning had to happen in some form in order to move forward. A deep google dive helped the fear set in, when a disability is googled, a lot of things your child “can’t” and “won’t” do comes up. She began to fear the life he would have and all the things she would not know how to help him do. Hope came later, hope that he might be the one who proves all the stats wrong, that initial hope is what helped push the fight in her for him. When asked how sharing her child’s diagnosis with family and friends was, she explained that it was overwhelming trying to hold herself together long enough to tell them about what Angelman Syndrome was and what this would mean for his future. Alhamdillah, knowing that she had family and friends to support her definitely eased her nerves and it became easier to grasp and explain what was going on to everyone around her.
When asked what are some misunderstandings people have about people with disabilities, Alaa explained that people with disabilities are..people! People with disabilities are usually painted with the same brush: things that they can’t do are the first things people see. There’s a term she learned early on in this new life path… “presume competence.” Instead of seeing what they can’t do, let them show you what they CAN do and see the purpose in what they do. Depending on the disability, she has also noticed people with disabilities get talked ABOUT instead of talked TO. They understand and know more than we think they do. When asked what are some amazing things Alaa wants people to know about her child, she explained that Ak isn’t just the light of her life, he brings light everywhere he goes. He sees the joy in everything and she feels everyone can learn a thing or two from him. He’s taught her and everyone around them how to truly love and be happy. He’s taught his classmates and the community around him empathy. He’s been nicknamed by family and friends as the human antidepressant. His smile and laughter are contagious. When asked what advice she would give to new moms going through the same thing as her she explained: 1) Trust your gut! You are your child’s biggest advocate! Fight for them, be their voice! You know them more than anyone else. 2) “It takes a village” is truer than ever when you have a child with a disability. Soon after her son’s diagnosis someone told her something that resonated with her “don’t be afraid to ask for help.” So, build your village, find the people you can count on, for the big stuff, the little stuff, or just an ear to listen to. 3) It is okay to cry. It’s okay to be sad. It’s okay to acknowledge both the good days and the really bad ones, because it is both amazing and hard. Accepting your child’s disability doesn’t mean never being allowed to be sad about it, there is grief in it and like all grief it comes and goes. It’s okay to feel that grief, throw yourself a pity party when you need it so you can enjoy all the good. 4) Presume Competence. Don’t let anyone tell you what your child cannot do, let your child show you. Present them with everything and see where they go. 5) Lastly, go easy on yourself. Give yourself a break. Parents with kids with disabilities throw themselves into taking care of their kid that they forget themselves. Make time for you. Recharge when you need it. Take care of yourself so you can take the Best care of them.
What we love about this cardigan is the COLOR and the luxurious material. The length is perfect and the pockets are an added bonus. What we love a lot about this cardigan is you can wear it multiple ways via the collar. The collar can be folded or it can be flat which adds a chic look to it.
Material Composition
50% Viscose
25% Polyester
25% Polyamide
Size Guide:
Small- Length: 36" Bust: 20" Sleeve Length: 23"
Medium- Length 37" Bust: 22" Sleeve Length: 24"
Large: Length: 38" Bust: 24" Sleeve Length: 25"
Extra Large: 39" Bust: 26" Sleeve Length: 26"
