Our next piece is named after Joumana Issa who has a beautiful daughter named Lily who was diagnosed at 7 weeks old with infantile spasms (seizure disorder). They do not present as typical seizures (convulsions) they look like spasm or sudden short jerks that come solo or in clusters. When asked Joumana what was her initial reaction or initial thoughts when she found out about Lilys diagnosis she explained that she was heartbroken that her first child, an innocent baby was given a diagnosis that was life changing and potentially life threatening. The unknown of what the future looked like for her health and developmental wise was terrifying. She was overwhelmed with the diagnosis. You get information from multiple doctors, and the Internet, which has so many success stories and even more stories of heartache and loss. It was an emotional rollercoaster to say the least and it still is. When asked if she was scared, nervous, or overwhelmed to tell her friends and family about Lily’s diagnosis she explained that it wasn’t hard to tell them because without their support Alhamdiallah we would be in a much different place. It was overwhelming though, trying to explain her diagnosis that she didn't understand herself. When asked Joumana what are some of the misunderstandings that people may have with children with disabilities she explained that the number one misunderstanding is that children with special needs are a burden and or they are fragile. They are resilient and strong even when faced with mountains to climb. They are in a league of their own when it comes to outings and day to day life. Inclusion is so important for them and their families, no one wants to feel left out. To add on to the list is that they dont understand their surroundings and you cant interact with them like you do with any other person without special needs. They dont like pity, just like their parents. They are a true gift, a blessing like no other Alhamdiallah. You can learn a lot from these kiddos, even when they offer no words. Will she ever walk? Will she ever talk? What is her life expectancy? These are questions that they do not like or appreciate, they are a bit insensitive. Her reply is always “only Allah knows their destiny and in Him we trust.” When asked Joumana what some amazing things people may not know about Lily she explained that Lily is truly the most amazing human she has ever encountered and she is the luckiest human to be able to be her mama. She has taught anyone that has had the pleasure to meet her what strength and determination is. She has had numerous hospital stays, and set backs. They have been close to losing her too many times if they were to be honest. She, with the strength of Allah has amazed everyone with her fight to live her beautiful life, Alhamdiallah. She prays everyday that she will be with them for as long as God allows and she prays it will be a very long time because she truly cant imagine life without her little girl. She is so humbling, she will warm your heart and put a big smile on your face, Joumana guarantees that. She loves to chit chat, cuddle, hold your hand, she loves school, hanging out with friends and family, camping is life in the summer and of course rocking a great outfit and hair accessory to match. She just loves to love and be loved! When asked what advice would you give new moms going through the same thing as you, she explained keep your head up and your heart full. Cry, yell, scream, let it all out whenever you need to, and then brush yourself off and take on the day because our kids need you too. Surround yourself with great people that love unconditionally. Dont do the what if’s or what did I do for this to happen? She has been there and it gets you no where but in a bad place. These children given to us are such a blessing. We were chosen to give them the best we can and in return they make us better people. Be their voice if need be, advocate and fight for them if you have to! They deserve the best just like everyone else! Days are going to be hard, but then come the good days that make the bad ones seem non existent most times. Just do your best and it will always be enough, because they are our world and you are theirs.
Our infamous hoodies are back but this time we went with a navy outlook and we absolutely love it. What makes this hoodie so perfect is the length, pair it up with some tights or some cute jeans and you are ready to take on the world! The hoodie is made out of cotton fleece.
Size Guide:
Small: Chest: 44" Length: 39"
Medium: Chest: 48" Length: 39"
Large: Chest: 52" Length: 40"
Extra Large: Chest: 56" Length: 40"
