#ATOEpiphany: Special Needs, Super Strength

ATO Epiphany / Beauty / Breaking / August 7, 2016
Name: Alissa W. | City/Town: Philadelphia | State/Province: PA

Sincerely Syreeta: What were the circumstances that preceded your #ATOEpiphany?

Alissa W.:  Fertile and fired is one scary combination yet somehow I found myself 20 weeks pregnant and 5 days post-termination about to learn whether I was carrying my little princess. I’d already had a little prince so of course a girl HAD to be next, right? Little did I know, a penis on an ultrasound was just the beginning of a ride that would shake my faith to its core and make me painfully aware that I am NOT in control! Qadr Allahu wa Maa shaa fa’ala, an Arabic phrase meaning: Allah had decreed it and what He willed has happened. If my life as of lately had a theme, that would be it.

SS: Shake your faith in what way?

AW: I learned that the baby boy I was carrying had a congenital heart defect which would require open heart surgery on his walnut-sized heart at a mere few months old. My heart was heavy, my mind was foggy yet somehow I tried to make sense out of why I was repeatedly being asked if I had undergone genetic testing in the earlier weeks of my pregnancy. I hadn’t, because: Qadr Allahu wa Maa shaa fa’ala. I would get the baby it was decreed for me to have. But then I learned that heart defects, the one my baby had in particular, was extremely common in babies with Down Syndrome.

SS: What was that moment like for you–realizing that your son, whom you expected to be a daughter, likely had Down Syndrome?

AW: I felt fear, and that was okay because I had faith, right? See, the thing about faith is it’s treated like this inherent thing substantiated by claims of possession. But how do you know if you really have it if it’s never been tested? I believe that there’s a point in life where you have to mature spiritually. I don’t know that I’ve reached the height of such maturity, but I do recall an epiphany I had at the time that I realized that such maturation was necessary. You don’t get what you want or become who you want simply by praying for it, well, not exactly like that. You pray for things like faith, and you get faith but you get it by being placed in situations where you have NO CHOICE but to rely on faith when everything you’ve ever believed is on the line. I prayed for faith often. I opted out of the initial genetic testing because I had faith. I had faith that I would get the baby it was decreed for me to have, even if that baby were to have special needs. I said I had faith but retrospectively, I’m not sure if I just said it because I was supposed to or because I actually thought I had it. Fear challenged my faith, and that’s okay because how do you know if you really have it if it’s never been tested?

SS: Faith will definitely challenge a person mentally, spiritually and emotionally. But realistically speaking…was that the only reason that you opted out of testing?

AW: Realistically, I opted out of the initial genetic testing because I didn’t think that there was a snowball’s chance in hell for my baby to have any issues. I’d worked with special needs individuals my whole adult life yet I still arrogantly believed that my procreation would be above reproach because I had faith. I had faith that I wouldn’t be dealt that hand because I didn’t want it. And I prayed for faith often, and I would get faith by being placed in a situation where I had nothing but faith to rely on.

SS: What did you find to be most challenging or painful about this situation?

AW: I was alone when I learned that my baby had Down Syndrome. I was without a job. I was experiencing marital discord. I was psychotic. I was not okay. My life had suddenly gone from congratulations to expectations for termination. I mourned. I mourned for my expectations. I mourned for the uncomplicated life that I once again so arrogantly believed that my baby would have simply because it was what I wanted. I even mourned for the loss of excitement as people [and] medical professionals expressed sorrow for my baby. I was not okay, but I had support. I had shoulders to cry on. I had ears to vent to. I had the humility to recognize that mental health matters and that despite the cultural taboo, I was in need of psychological and psychiatric help. I did not have my other half, the one person who was equally impacted by all of this. It wasn’t until I had digested my own feelings that I was able to realize that his faith was also being beaten by fear. In the moment, not being able to appreciate the fact that he was probably going through the same internal battle that I was…I was angry, bitter and full of resentment. It was like I had a whole crowd cheering me through this battle but that wasn’t enough because of that one face I didn’t see in the crowd.

Alissa_3SS: Walk us through what those moments of solitude were like for you…

AW: I was alone when I learned that my baby had a heart defect that would require open heart surgery. I was alone when I learned that my baby had Down Syndrome. I was alone and nervous at nearly all of the weekly prenatal appointments, afraid that there would be more bad news. After my baby was born, there was more bad news. I was alone when I learned that my baby had a rare disease that would require surgery at 6 days old. I was alone and full of resentment, but even more difficult was how well I had to appear to keep my outward composure though there was a vicious hurricane going on internally. I was a mother. I already had a child who depended on me. I couldn’t take a break from who he needed me to be, and so I didn’t. And though difficult, that was okay because that was what I needed to stay halfway sane. That’s what kept me from completely losing it. I would forget to eat. I wouldn’t sleep. I was still present, even if it was just my shell, and I was able to be mother enough to protect him from my hurricane.

SS: What did walking that dangerous line teach you about yourself?

AW: I was not okay, but the ability to recognize that was a blessing because I did not have to play victim to my circumstances. I felt fear. I felt anger. I felt guilt. I felt a whole lot of weak emotions that I did not want to feel. I was stubborn and uncomfortable with accepting help. I needed to feel all of that. I needed to feel all of that at the very same time so that I could be completely broken and vulnerable enough to realize that this was the situation to test the faith I thought I had and to give me the faith I’d been praying for.

SS: And so what did all of this teach you about life…and people?

AW: Qadr Allahu wa Maa shaa fa’ala. Life happens as it is willed to happen, not as we wish it to happen. Once I completely grasped that concept, the storm didn’t seem so bad. I wasn’t okay, but I would be okay. I didn’t have who I wanted in my corner at the time, but I had every single person I needed at the time and they all loved me through my stubbornness even when I didn’t feel I was deserving.

SS: How did you get to the space where you could honestly say, “this happened…and that’s okay” without feeling any negative emotions–or at least significantly less?

AW: I had a visit with my psychologist. I BEGGED for that appointment! I was aware that I was losing my mind but apparently it was further gone than I thought. I was manic. I was obsessive compulsive. I was completely broken and as difficult as it is for me, I was in tears. I was hopeless. I was out of control and that was NOT okay. That was a turning point for me.

Sometimes you need to be broken down to be built back up.

SS: What was your greatest fear at that moment?

AW: I feared that I would not be able to safely manage two children and I knew that I had to get a grip. I had to findAlissa_1 the bright side in this darkness, if not for me, for my children. And with faith, mental health care and resilience, I was able to do that. I was unemployed, and that was okay because I now had an opportunity to tap into my talents with a different type of motivation. I was having a special needs baby and that was okay.

SS: Was there a blessing that you managed to find in all of this?

AW: I was blessed with the opportunity to know my child a little better and prepare for him a little more. I felt alone and that was okay because once I regained mental clarity, I was able to see all of the love and support surrounding me. My faith was tested. My faith was strengthened and I was able to trust that my journey was decreed for me.

SS: What verse from the Qur’an speaks to that moment in your life?

AW: “Verily, with every hardship comes ease!” [Qur’an 94:6] Narrated Abu Huraira: Allah’s Apostle said, “If Allah wants to do good to somebody, He afflicts him with trials.” [Sahih Bukhari]

SS: With your spiritual foundation firmly planted, what words of wisdom would you pass along to someone else, Muslim or otherwise, that is experiencing something similar?

AW: Trust the process. Embrace the weakness and welcome the strength.

SS: Since having your #ATOEpiphany, how do you live your life differently now?

AW: I understand that I am not in control. Life will happen as it is willed to happen, sometimes bringing me to my knees, the perfect position for prayer, the most powerful weapon.

SS: In keeping with the idea that things don’t happen to us, rather for us: Why do you think that this may have happened for you?

AW: Qadr Allahu wa Maa shaa fa’ala, Allah had decreed it and what He willed has happened.

SS: If you could sum up your ATO Epiphany in one sentence that ends with “and that’s okay”, what would it be?

“My son has Down Syndrome, and that’s okay.”

– Alissa W.

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