For most, the decision to have a baby comes with visions of a new life filled with sleepless nights, first words and tiny giggles. For some however, the daydreams become an alternate reality when things don’t go as planned. We first met Jasmine Jones through Instagram, later hooking up with her and her adorable family IRL at a heymama sponsored event. Her positivity was magnetic and we knew we wanted to know more about her. You see, Jasmine’s son has been diagnosed with Angelman Syndrome (AS), a rare, neurogenetic disorder that occurs in approximately 1 in 15,000 live births. Today, February 15th, is International Angelman Day and by Jasmine sharing her story, we hope to help her raise awareness for this curable disease. Here is their story…
Mothering a special needs child is truly extraordinary in every way. I’ve learned that even though your child has special needs, the world keeps moving at a normal pace around you. Life isn’t adjusted to our needs, we need to adjust to what is considered “normal”, but our situation is anything but. We’ve had to adapt and we’ve done a pretty great job.
Our son, Alexander Cree was diagnosed with Angelman Syndrome (AS) which can present itself in similar ways to Autism or even Cerebral Palsy, and has a whole host of related issues such as balance and walking disorders, jerky movements, hand flapping, lack of speech into adulthood and more. People living with Angelman Syndrome will require life-long care and some days, it’s too overwhelming to process. There are days that I am frustrated and defeated, and crying out for a cure for my little boy, but we have no choice but to keep fighting. From the therapies and adaptations and wanting to be included in our social circles, to praying for a cure and wishing that I had enough money to put towards research, you adapt. I’ve accepted that there are no guarantees in life other than being born and someday dieing. Life doesn’t owe you anything. This is my situation, and after changing what my expectations were out of life, it opened me up a whole new way of living.
There are three things that have become mantras to me; love, hope and happiness. I love my son so much that I’m getting teary eyed writing this. He’s a beautiful ball of joy. He has no $%& idea that he has Angelman Syndrome. All he knows is that he has a mommy and daddy that plays with him, makes him delicious food, and gives him a fun life. He’s non-verbal, but looks at us and his eyes say “love me, I’m here and I love you, just love me!” That gets me through. I also have hope. There’s so much hope for our sweet boy. The world of genetics is rapidly growing and there’s some pretty amazing things going on with a cure for Angelman, which gives me hope for my baby’s future. Lastly, I try to live in the moment as much as I can. You get one wild, crazy and beautiful life… what are you going to do with it? There are so many reasons to be happy in life and I pay attention to those moments and appreciate them. It doesn’t mean that my heart doesn’t just break because of feeling robbed of my motherhood experience sometimes. Alexander was my first pregnancy, my first baby, and so many milestones either took f-o-r-e-v-e-r to happen, or just never have, and that hurts. My son is now four and most four-year-old’s speak a lot about life and how they see it and I want to hear what he thinks! I tell myself that someday this will all make sense and someday the miracles and unexpected victories will outweigh all of the pain, grief and heartbreak that has come with this. I make sure to surround myself with people who support us and are sensitive to our situation. I have no interest in being around moms who brag about their kids (who are my sons age) meeting milestones that we can’t, or people who treat us like we are aliens. I want people to treat him the same way they’d treat any other child and include us. The special needs community is often isolated because we don’t feel accepted or understood. I want to be a beacon of light and an example for special needs families as someone who didn’t isolate themselves because we are just “too different”. Although this is hard, I’m trying my best to promote inclusion and acceptance and less division and isolation.
We’ve channeled our frustrations into creating a foundation Beautiful Rising Sun, helping to fund a cure for our little boy and others like him in partnership with the Foundation for Angelman Syndrome Therapeutics (FAST). I truly wish everyone could see my son through my eyes. Of course to us, he’s the most perfect being. He’s absolutely gorgeous inside and out. He’s a sweetheart. We get weird looks from kids a lot, and even adults and it hurts, but I get it because I know they don’t understand. We are a mixed race family, so even before our son was born, we were always the main attraction. People stare and make comments, but the comments were often more good than bad. So I say all of this to say that we are used to it, and it all goes along with not discriminating and realizing that before we are black or white or mentally disabled or atheist/Jewish/Christian, rich/poor, we are human. Pain is the same and love is the same. We all bleed the same and we are really more alike than we realize.
I believe conversations should be had with children to guide them to accepting people who are different. We all are, but educating them to accept people who may have a different skin color, different abilities, different languages or different family dynamics goes a long way. It’d be great if other moms could treat my son exactly how they would want their babies treated if they were given these harsh, unfair, undeserving and painful cards in life.
For me, being a special needs mom is the worst and best thing that has happened. It’s the best because it has taught me to look at life on a level that I’m proud of. Full of depth, undertaking and true appreciation for the breaths I take everyday. Do I wish I could’ve somehow learned this without Angelman? Maybe, maybe not. Ask me when I’m 90 (or once there’s a cure). Being a mother to Alexander Cree is like waking up everyday to fight a battle that seems like it has no end, but I make the choice to find the beauty. We have so many expectations out of life. I think everyone should know that life doesn’t owe you shit and to appreciate the heck out of all that you have, especially your health!
To learn more and donate to The Beautiful Rising Son Foundation, visit here.