Mom of two, Nathalie Tamasha opens up on the trials and tribulations of raising her special needs daughter, Amanda

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We all know that motherhood is the hardest and most difficult job ever but there is nothing compared to raising a child with special needs, and according to this beautiful mom of two, it’s harder than hard.

Black moms daily: Who are you and what do you do?
I am Nathalie Tamasha, I am from Congo (DRC) and I am based in Sweden. I work (was working) at the refugee integration but I am still on maternity leave. I and my fiancé recently welcomed our first child together, a baby girl. She’s my second and Amanda is my first.

BMD: Tell us about your first pregnancy…
Well, my pregnancy with Amanda was completely normal. No complications whatsoever, no cravings and all that stuff.

BMD: Which trimester would you say was the hardest?
The third trimester was the hardest for me because then I learned about Amanda’s condition. Learning about my unborn child’s condition was definitely the most difficult part of my entire pregnancy.

BMD: What’s this condition and when exactly was she first diagnosed?
She was diagnosed with a rare condition called congenital hydrocephalus (CSF) when I was 7-month pregnant. Hydrocephalus is the buildup of fluid in the cavities (ventricles) deep within the brain. The extra fluid can increase pressure in the child’s brain, causing brain damage and mental and physical problems. What it means basically is that there is some water in her brain. Some children have more brains than water but for Amanda, she has no brain, only water. It is said that she has 3% of brain and 97% is water.

BMD: What are the other problems associated with hydrocephalus?
Problems associated with hydrocephalus include blindness in some kids, dumbness, delayed growth, pain due to the pressure of the water in the head, problems with eating and many more.

BMD: Can you share your birth experience?
Well, my birth experience was very different from most mothers or should I say the regular normal birth. I had Amanda July 4th, 2014, that was about 5 days before her due date via a planned c-section. It was planned because the doctors thought I wouldn’t be able to push since the scans were showing Amanda had a big skull (or head) already so I was to give birth earlier before my due date. I didn’t experience contraction, labour pains and all that. But in all, it was really quick, I went to the hospital on an appointment, then I went into the operation room, they gave me anesthesia, cut my belly and boom they got her out.

BMD: Different things can cause hydrocephalus in a child, in Amanda’s case, what would you say is the cause?
So far we haven’t been able to determine that but Amanda’s father told me it happened to him once some years back, he had a girlfriend who got pregnant and at 5-month they discovered the baby had hydrocephalus too but they aborted it. Since it happened again with me, I guess it’s safe to say he had the problem.

BMD: Is he involved in her upbringing?
He was there for her financially from when she was born till 2016 but never physically since she was born yet we lived 1-hour from each other. Money is not everything, the physical presence matters a lot especially to a child who needed both parents more than anything else.

BMD: When did she have her first surgery and how many has she had so far?
Amanda had her first brain surgery at 8-month-old and so far, she has had 3 surgeries.

BMD: How expensive are these surgeries and how did you raise the fund?
The first surgery she had in Uganda cost 1million Ugandan shillings ($350), her dad paid for it but the one she had here in Sweden was free.

BMD: How does it feel parenting a special needs child like Amanda?
Parenting a special needs child like Amanda is a gift from God, it is very hard but at the same time if you can understand the voice of God then you will feel blessed among women, it feels special, I feel like a hero.

BMD: What are the highs and lows of being her mother?
I feel very proud and brave, not every woman would keep such a child because it is a very rough road, I am always proud talking about her journey to people because I know it inspires them. I believe I love her right, and I treat her right but at the same time, I feel like it’s getting way too much for me. It gets too hard for me. Sometimes I miss out at work because I have to be in the hospital with her and this automatically reduces my take-home pay at the end of the month. Sometimes I get well-paying modeling jobs (I used to be a model) but Amanda limits me. I do cry a lot, I do lose hope at times but I guess so is life

BMD: After she was diagnosed, why didn’t you follow the footsteps of her father’s ex-girlfriend and terminate the pregnancy? Why did you choose to keep her knowing full well about her condition and all that she will face in life?
Well, first things first, abortion is a sin! No woman would happily abort her first grownup pregnancy, I believed she deserved a chance to live — just like me, just like everyone else, condition or no condition.

BMD: What is a typical day like for you?
A typical day for me (well even now I’m very sleepy typing) it’s hard! That’s what I can say and now I have two children (well I am not complaining) but a day for me is very hard.

BMD: Who would you say has been your biggest support system?
My biggest supporters are my siblings. They’ve supported me through thick and thin, since day one and I can’t thank them enough for being there, always, it’s enough for me and Amanda.

BMD: What is the most ridiculous thing you have been told since Amanda?
The most ridiculous thing I was told was said to me by my mother. She told me, “How can you proudly show that thing to your cousins? Will you also say you gave birth to a baby or a ‘thing?’ Better ask God for forgiveness for whatever you did for Him to give you such a child.” Those words pierced my heart deeply.

BMD: Does that mean she isn’t supporting you?
I respect her and I love her so much and there are so many things I just have to keep personal but yes, she never supported me, rather, she added to my pain by discriminating against my child who is her granddaughter.

BMD: What is your relationship with her?
We were very close like – like two little gossipers but then everything changed after I got pregnant and had Amanda.

BMD: Have you ever lost friends because of her condition?
No, I never lost any friend because of her condition rather they pitied me and kept closer.

[READ also: Moving on after the loss of a child – mom who lost one of her triplets at NICU shares her inspiring story (must read)]

BMD: Have you ever felt embarrassed by her condition, especially in public?
My dear, I have never and will never be embarrassed, as a matter of fact, I am always proud of her, showing her off and gladly replying to anyone who is curious about her condition.

BMD: What is your biggest lesson learned?
My biggest lesson learned is that God has a reason for everything and He can’t give you a battle you can’t win, the hardest battles are given to the strongest soldiers. Also, you can never know how strong you are until being strong is the only option you have got, trust me you would be surprised at yourself.

BMD: What are your expectations for her?
For her to keep being mummy’s princess, that’s all.

BMD: Do you believe in miracles?
Yes, I do believe in miracles and I always pray for one.

BMD: Do you believe your little girl can be healed?
Yeah she can be healed in Jesus Name

BMD: Do you plan to have more kids?
I think one more would do.

BMD: What advice would you give to parents of special needs children like Amanda?
Love that child, she might just be your guardian angel sent from above, treat them just like other normal kids and God’s grace will always be upon you! Remember, love conquers all and only hard battles are given to strong soldiers. We are the heroes of our children.

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