Motherhood Voices Blog Interview Series – My Life and Journey as Mother of a Child With Special Needs

Welcome to Motherhood Voices

MY LIFE AND JOURNEY AS MOM OF A CHILD WITH SPECIAL NEEDS
Oneinspiredmum: Good morning ma’am. We are so excited to have you here.

Guest: Thank you. I am glad to be here.

Oneinspiredmum: Firstly, we have some quick questions we will like to ask you. Here we go.

Quick fire questions

1. What book are you currently reading?

Guest: I am currently reading Raising Resilient Children (A book about raising special needs children).

2. Who or what inspires you?

Guest: I will say all adults living with Cerebral Palsy inspire me. They give me hope that my daughter will grow up to become useful in life.

3. What does motherhood mean to you?

Guest: Motherhood to me is love, dedication, & strength. Especially when one has a child with disability. It brings out your strength & courage. Sometimes I wonder and ask myself, Am I really the one doing this?

Oneinspiredmum: Thank you Ma for taking out time to answer these quick questions. Once again, I am glad to have you here and I appreciate you for taking out time to share your story with us.

So over to our Main Questions.

1. Can you tell us who you are?

Guest: I am Blessing Kingsley. I am married with 3 kids and I am from Edo State in Nigeria.

( Sometimes, for confidential reasons, I take out my guest’s name if requested by her. I stated to my interviewees when I contacted them, that you can choose to be seen or remain anonymous and I will surely respect that choice. If the guest agrees, her real image will be used, if not the blog author uses free images available.)

2. Can you share with us the background of your story?

Guest: I got pregnant and was very happy like every other pregnant woman. I did several scans and was told each time, that my baby was fine.

I gave birth normally without any stress, but my daughter had jaundice. And I was told that it was mild and that it will go away. That was how it all started.

3. When or how did you discover that something was wrong with your baby?

Guest: When it was time for her to start sitting, we noticed that she had not gained any neck control. She could not sit. Her neck was always dangling and she couldn’t make any sound. We took her to the hospital and the doctor said that children achieved their milestones at different times.

He said our daughter was just having delay in achieving her milestones and that she will be fine. That was how we went home still believing that all will be well one day.

Some people suggested we take her to traditional homes to massage her body. Some suggested going to different churches. We went to all these places and spent a lot of money but nothing changed in our daughter.

4. How did you get to know the right diagnosis of your daughter’s condition?

Guest: For 5 years we didn’t know what was wrong with my daughter, we just kept her indoors. So during her 5th birthday, I summoned courage and posted about her in a female group on Facebook. That was the first time in my life that I have ever talked about her.

The comments I read on the group that day opened my eyes to a lot of things. Many of the group members came inbox to persuade me to take her to the hospital for review.

Some even sent me money to go to the hospital. A woman in the group introduced me to Aunty Tobiloba Ajayi, who made sure that I took my daughter to the hospital.

It was when we got to Lasuth ( Lagos State University Teaching Hospital), that we were told that our daughter had Cerebral Palsy. And that she needed therapies to help her.

Cerebral palsy (CP) is a group of permanent movement disorders that appear in early childhood. Signs and symptoms vary among people and over time. Often, symptoms include poor coordination, stiff muscles, weak muscles, and tremors. There may be problems with sensation, vision, hearing, swallowing, and speaking. Wikipedia

5. What was your first reaction when you were told about your daughter’s condition?

Guest: To be sincere, I went numb when the doctor started telling me about what to expect, and how she might never walk .

I started imagining me caring for her for the rest of my life. I wondered how would she cope when I die, especially in this world of stigmatization.

I became a shadow of myself. I isolated my self from everyone. I blamed God, my hubby, myself and even my daughter for coming to me, when she knew she was going to frustrate my life.

6. Can you share with us how the journey has been caring for a child with special needs?

Guest: The journey has not been rosy at all. My daughter is 8-years old and I do everything for her.

I live in a public house, so this means that I have to take her outside to bath everyday in the morning and at night. I also feed and cloth her etc.

I am her legs, hands, eyes and ears. And because of the way bus conductors talk whenever I carry her wheelchair, I settled for strapping her on my back whenever I am going out.

7. Some mothers with special needs children hide their children inside their homes. Did you hide your child? What is your take on this?

Guest: I do not blame them for doing that. It is because they have not accepted their children. I once did that too. I remember that before I accepted my daughter, I used to hide her inside the room whenever we had visitors.

I did not want to be seen with a child on a wheelchair. Sometimes then, if we were going out as a family, I will stay far behind so as not to be seen with her. Even in church then, I will sit behind in the church, and allow her dad to take care of her. But all of this changed after I accepted her.

And that is why I am trying to teach acceptance to other moms going through this same situation. The day you accept your child, you will never be ashamed to be called his/her mom.

8. Were you at any point angry at God and bitter about your child’s condition?

Guest: Yes, I was very angry. Infact, I was annoyed with everything and everyone around me.

I always dreamt of having lovely daughters, and how we will twinning together everywhere. That we will be best of friends and wear the same dresses and shoes.

But here I was, held down and taking care of my daughter on a wheelchair.

9. How has having a daughter with special needs changed you as a mother?

Guest: I am more calm as a person. I am always ready to learn new things, especially things that can teach me things to help my daughter.

I am also able to balance my time and energy between taking care of the home, a special needs child, my other children and my husband.

10. What is the relationship like between your other children and your daughter?

Guest: This is the best gift I have on this journey. My younger daughter and son are so helpful. My younger daughter helps in changing her diapers, and sometimes puts on her clothes.

They are very fond of her and everyday I give God thanks for this. I am very sure that my daughter’s future is secure with the love and care her siblings shower on her.

11. Has your daughter’s condition affected your marriage in anyway?

Guest: When my daughter was still young, my home nearly broke up because of my in-laws. They were very angry that I gave birth to a disabled child.

But thank God for my husband who has been very supportive from day one. He never allowed anyone to say any negative words to me or my daughter.

He shielded us from insults. He always told them that I gave birth to what he put inside me. And that they should get angry with him too. That was how they stopped tormenting me.

12. What are some of the challenges you face as a mother caring for a child with special needs?

Guest: The first challenge is her feeding. My daughter does not allow anyone to feed her except me. Sometimes, I may be very tired, but I will still get up to feed her.

Taking her outside to bath everyday is sometimes tiring, because her weight is really increasing fast.

Going out with her is also a major problem here, because whenever we go out with a wheel chair, we go through a lot, because our roads are not accessible and wheelchair friendly.

And whenever I decide to leave the wheelchair at home, I have to strap her on my back to wherever I am going to.

13. Have you ever thought of giving up on this journey?

Guest: Yes! Many times I have felt like giving up, especially when I see how taking care of her is really draining us financially. Also during those times, when the thought of her being dependent on me for a long time to do things for her, I always feel like giving up.

14. Where do you draw strength from in the midst of the emotional drain and uncertainty?

Guest: I read so many inspiring stories about children with special needs. I see that many people who have cerebral palsy are getting married, doing well in their chosen career and give birth to normal children.

Then I said to myself, if these people can make a name for themselves despite their challenges, then my daughter can do better. I just have to focus on how to help her achieve these things and milestones.

15. Are you scared about your daughter’s future?

Guest: I used to be scared, but not anymore. All I want to do now that I am still young and agile, is to see that she is not a liability or useless.

I want to try to see that she gets the best education we can afford and learn crafts as well.

We are gradually getting to a stage here, where we no longer stigmatize or discriminate people with disabilities.

16. What is your most painful and joyful experience on this journey as a special needs mom?

Guest: The painful aspect is when I see other children that are my daughter’s age running around, while my daughter is glued to a spot on her wheel chair. It is only when her sister is around, that she helps to wheel her to join them to play.

It is also very painful for me whenever I want to wear her diapers. It hurts seeing my daughter wearing diapers instead of telling me that she wants to wee. That is why I assigned the wearing of diapers to her younger sister.

The joyful experience is that I have met with people I never dreamed of meeting. People are always ready to listen to me and help me too.

Whenever I post my daughter’s picture, the reactions and comments I get always makes me happy.  People love and adore her when they meet her. That to me is the joyful part of this journey.

17. Can you share with us some life lessons you have learnt on this journey.

Guest: I have learnt that when you have problems, people you call friends will desert you. I have learnt not to look down on anyone because they can be the one to stand by you when you need someone.

I have learnt that I am my daughter’s researcher, no one will tell you how the journey will be actually. You have to learn everyday. I remember then, when no one wanted to come close to my daughter at all. Parents warned their kids not to come near her.

I nearly gave up seeing that my daughter was not accepted. But the very day I took the bold step of accepting her in my heart, things changed.

I began to care for her with all of my heart. I pamper her and buy her the best attires I can afford. I make sure she smells good all the time and buy her things none of my other children ever had.

Then the children started coming close to her. And when their parents saw how close I was to her, and how we go for strolls around the streets and market together, they too dropped their ignorance and started touching her. I learnt then that you do not expect what you cannot give.

18. In what ways do you advice that we show real and practical support to families who a have special needs child?

Guest: The first thing is to show ACCEPTANCE, EMPATHY, LOVE & CARE to children with special needs.

When you see a child with special needs, instead of giving that disgusting look, a simple HI or HELLO will do.

These children should also be supported in every way by organisations and the government, especially in the area of their education and financial support for their families.

The joy of every parent with children living with disabilities is to see that people accept their children. Whenever you are having parties, invite children with special needs too. It makes them feel they belong and means a lot to them.

19. Your final word to everyone.

Guest: Everyone can come out to support people with disabilities. I know of a group (Super Parents). The founder and most of the admins do not have children with disabilities. But they are so interested in making life comfortable for us who have children with special needs.

We all as humans should learn EMPHATHY & not SYMPATHY. We should also teach our children how to love children with disabilities.

We should not stigmatize or discriminate them. They are human too, just different.
And for any young mother going through this should, please relax. I have been there.

Just take that bold step of acceptance today. You are your child’s first advocate and others will only follow your steps. Yes you can cry. Sometimes I just stay in a place and cry, then I have my bathe and get ready for the journey ahead.

It is when you start taking care of your child, that people will want to help you.
Be proud of your child, help her grow to become useful, so that at the end of it all, you will look at yourself and say, I mothered this child and I am fulfilled.

Oneinspiredmum: Thank you Ma for sharing your story with us. We appreciate you.

Guest: Thank you for having me.

Did you get a lesson or two from our guest’s story?

Or perhaps you are strengthened and encouraged by her story.

Please share your thoughts with us in the comments section or feel free to reach out to us through the contact segment of the blog.

You can also reach out to us, if you feel that you have a story to share. We will be excited to share your story.

Love and light.

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