(This article is part of a series, “A Mother’s Journey” – a collection of stories in honour of all mothers, and those who are a mother at heart and spirit. I hope this would inspire and help other parents in some ways.)
Khadija Malik, 28, fights for her son’s rights every opportunity she gets. She is also grateful for the things people around Esa do for his betterment, and she openly gives positive feedback on great services she and Esa receive even it is as simple as an accessible washroom in a public place.
At age 23, Khadija was blessed with her first born, Esa, who has Spastic Quadraplegic Cerebral palsy and some vision issues. However, having Esa’s condition didn’t stop Khadija and her husband Lyle from having two more children, Adam and Emaan, who have made lives more colourful for their family.
While tending to Esa, Khadija pursued and finished her bachelor’s degree and Behaviour Therapist certification. Now a mother of three children under 6, she is also starting her Masters in Education along with running a home-based business, Barn Style Treasure specializing in home decor.
From the look of it, Khadija seems to have her situation managed with ease. Did she? Let’s find out how her journey has been as a mother of a child with special needs.
RK: What’s Esa’s condition?
KM: Esa has Spastic Quadraplegic Cerebral palsy and some vision issues.
RK: How did you find out about his condition?
KM: Esa was born at 30 weeks which led to him staying in the NICU for 35 days. During his time in NICU, ultrasound was performed where we learned that Esa had brain damage from premature labour and a blood clot, but we didn’t find out he had cerebral palsy till he was 7 months old.
RK: What was your first reaction?
KM: I was heart-broken, and I remember when the doctor was telling us about his condition, I zoned out and I could hear her but I couldn’t respond or understand anything, because the information was passing over my head and I wasn’t able to digest the news. I didn’t even know what cerebral palsy was, and lots of medical terminologies that I didn’t understand either.
RK: Was there a moment where you told yourself “I don’t want this?”
KM: Of course, we never ask for hardships and we don’t want hardships, and seeing your child go through the struggle and knowing what lies ahead of them is not an easy thing to deal with. On top of that, a lot of people from my culture told me I must have committed a major sin to have this punishment. Comments like that made it unbearable to deal with this hardship because the way people looked at me was hard to handle sometimes.
RK: Did you get scared, having him with that condition?
KM: Yes I was very scared, I didn’t know where to turn for support, how to grieve and what was normal to feel as a parent. I was also scared of how this would affect our lives in the long term.
RK: What is the most challenging thing in having Esa?
KM: That’s a tough question because it changes day to day, but I guess if I had to choose one thing, it is dealing with ignorant people. People who can’t see him as a person, as an individual with a lot of great things to offer, but seeing him as a crippled person who is just a burden.
Also, I lost many friends because they don’t understand how my life has changed since I had Esa, they don’t understand the physical and mental stress special mom’s life demands.
RK: How do you cope with the challenges that come with having a special child?
KM: My husband and our families are very supportive, so I have been able to get through the grieving process through that. I have also met many great parents through Three to Be Facebook group that has helped me get through many things.
RK: What’s your greatest fear for Esa?
KM: That no one will look after him if something was to happen to me and my husband.
RK: What’s your wish for him?
KM: I hope for him to be as happy as he is right now. I hope he grows up to be a man who is inspiring to others and make a change in other people’s lives.
RK: Attending to him and his needs are challenging in itself if there’s one thing that frustrates you, what is it?
KM: People expecting me to give them time when I am busy with appointments. Friends who are complaining I don’t spend time with them and not understanding the amount of paperwork and appointments we have. It is hard for us to find time sometimes. It would be nice, if more friends came to help us, and wanted to come to spend time with Esa.
RK: What are the treatments he goes through?
KM: He has physiotherapy, occupational therapy, speech therapy and vision therapy. He also goes through regular weight check, because he can’t seem to manage a stable weight. And he gets botox injections in his legs to help him relax.
RK: Is Esa’s case something that will need lifetime care?
KM: Yes, he will need help and care all his life.
RK: If yes, how do you prepare for it? Or do you have any plans for it?
KM: We want to instill in our kids that he is their brother, and they will need to look after him if anything was to happen to us. We want them to grow up understanding that yes they didn’t choose to have a brother with special needs, but Allah chose them to have the opportunity to gain ajar (reward) by helping their brother and looking after him, without any compulsion of course.
We are also working on our will so that if anything were to happen to us, there’s someone who would look after Esa. My family and husband’s family are very supportive and they would do anything to look after Esa, so I am not as worried as I used to be since I had that conversation with them.
RK: Where do you draw your strength from?
KM: Allah first and foremost, if it wasn’t for Islam I really wonder if I would be alive. Secondly, the support around me. I have some great people in my life who have really stepped up to be there for us mentally and physically.
RK: How do you keep up with his needs and your family’s needs (hubby and other kids)?
KM: We take turns looking after him. hubby and I have date nights, where we spend time with each other, and we plan to do the same thing once Adam/Emaan are older, to have date nights just with the kids one at a time so no one feels left out. Esa also gets PSW hours which are helpful at times if we get a good PSW. But sometimes it’s more of a burden to have someone come in and look after Esa, because I have to end up cleaning up after them.
RK: Do you get a break from being his caregiver to just be yourself?
KM: I think that’s a tough one, I mean I don’t really need a break from him. He is like any other child that we need a break from LOL. So, in general we go on date nights and I have my own hobbies that I enjoy.
We get funding for Esa, so it helps get us the respite hours but the way respite hours work it’s ridiculous, I mean we need a break from the KIDS, so just leaving Esa at home is not what we need but a babysitter to watch all the kids
RK: How do you de-stress?
KM: I think for the past while my education has been my de-stressor. Recently, it’s been working out, working on my home-based business, and spending time with my husband and kids.
RK: Would you please give three things that you are thankful about and 3 things that you look forward to?
KM: 1) I am thankful to Allah for all He has blessed me with. I had to work on my taqwa (consciousness of Allah) a lot in the past 3 years, but I believe I have come far and alhamdulillah I am thankful for that. 2) my kids, I really love spending my time with them 3) my husband and family.
I look forward to many things. I look forward to seeing what my kids turn out to be, it’s such a beautiful thing to see kids bloom into beautiful individuals. I look forward to doing my masters and getting my Ijaza for Tajweed.
RK: What message do you want to get out there: For those moms of special child/ren?
KM: It’s okay to be scared, it’s okay to be sad. You are allowed to grieve and you should allow yourself time to grieve and mend, but don’t get stuck on fixing your child, because he was and will be what he is before and after his diagnosis.
RK: The society?
KM: To be more accepting and accessible. Now that Esa is getting older, I realize how inaccessible Canada is. It would be nice to travel and not have to worry about finding an accessible change table, a table etc.
RK: What do you want to tell Esa?
KM: He is a miracle. He is a blessing. We are blessed that Allah chose us to be his parents. He is our ticket to Jannah and I am proud of the little man he is becoming. I want him to know, I will love him no matter what and that I look forward to our future together in this world and in Jannah where he can do what he pleases.