Nurturing and caring for a child with special needs requires twice as much patience.
The attention you pay to that child and the sacrifices you make as you strive to make life as easy as possible for them are important.
There is also much joy in the process.
Ask Joy Waldron, a 43-year-old mother of eight-year-old Jolaina, who was diagnosed with Rett syndrome in 2003, at the tender age of three.
“I think it’s the strength of love that keeps us going. Because if you don’t have a love for what you are doing with these children, you are going to give up because you are going to burn out. You have to have love; you have to have strength and you have to have patience; and I had to learn that fast,” she told Barbados TODAY as she spoke about her daughter’s condition during a recent interview.
Rett syndrome is a neurodevelopment disorder that affects girls mostly. It is characterized by normal early growth and development, followed by a slowing of development, loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, problems with walking, seizures, and intellectual disability.
Joy’s story is one of sadness, hope, admiration, inspiration and thankfulness all in one. Her daily life is centred on the adage Can a mother’s tender care cease towards the child she bares?
“She was okay like any normal child. After she turned two and had the vaccination, I realized that she stopped talking and I said to my husband something is wrong; and he said nothing was wrong, it is probably excitement, because we were getting ready to travel for her birthday.
“Everybody was telling me it is nothing. I am like, ‘Something has to be wrong, because a child that is talking don’t just stop talking’. We took her to about five pediatricians, and they all said that nothing was wrong with her, ‘Just give her time and she will talk again’.”
After knocking from door to door, the mother finally visited one pediatrician who recommended a number of tests be carried out on her child, and they all came back negative. However, one day she received a call from that same doctor asking her to come to her office, where she was told that another physician overseas had been contacted and it was suspected that Jolaina had Rett.
“She [the doctor] said, ‘Okay, you do your investigation’, which I did and I realized that my daughter had a lot of similarities to what I was reading on the Internet. I called her the next day and I said to her, ‘You know what? My daughter don’t have this, you know’. I was in denial. I told her I wanted to do the test.
“She said, ‘But, you got a visa? You got a passport?’, and I said, ‘What that got to do with we going down at QEH?’ She said, ‘No, you have to go to Miami’.
We went to Miami and got the test done and had to wait six weeks until we could get the results. When the results came back, they were positive for Rett syndrome.”
Not the type of news that Joy, also a mother of three other biological children (ages 14, 18 and 21) and a 32-year-old stepdaughter, desired to hear. She recalled feeling heartbroken, as though her life had been turned upside down.
She went home and for weeks she cried. Her inability to eat properly caused her to lose some weight. Eventually she came under pressure from friends and relatives who pleaded with her to pull herself together –– if not for herself, for Jolaina.
“And I was determined that I am going to make this work. I went on the Internet and made friends with people whose children had Rett syndrome and within that night I had over 200 friends. They were able to talk to me about it; explain to me what to expect, what not to expect.
However, despite all the information gathered, Joy said her experience with Rett was not what she was told to expect.
“This is because of determination, motivation and my faith,” the devoted Christian proclaimed.
Through all of the ups and downs, the determined mother stood by her daughter’s side hugging her when she was cranky. She wiped away the tears when she could not express her feelings and when it seemed as though the condition was taking a turn for the worse.
“Two years ago, she stopped walking. I knew she had to walk again. I enrolled her in physiotherapy and occupational therapy. She was getting both twice a week. She is now walking again, but not as strong as before. She can’t walk distances; she would have to use a wheelchair.
“They told me that she would loose her speech; she did loose her speech, but she is now calling words again. I think it is because I am determined and my faith in God has brought her this far. It is a lot of love, encouragement and pushing her to where she is today. But it is not easy. It is not easy.”
Even at the most difficult moments of coping with Jolaina’s illness, Joy never blames herself for the child’s condition. She believes this was because she was prepared for it even before she was born.
She said that two months before she found out she was pregnant, she had a dream that she was going to have a baby girl named Jolaina.
Two months later, she found out that she was going to have a baby. That dream was followed with another that revealed her baby was going to have challenges. In the first trimester of her pregnancy Joy experienced complications which physicians investigated and assured her there was nothing to worry about.
“When she was six weeks, I took [Jolaina] for her usual check-up, and they told me she had a hernia. When she was seven weeks old, one morning I got up and she was completely blue. I took her to the paediatrician and she said, ‘This don’t look good, girl; something is wrong’.
The baby girl was in need of emergency surgery.
“When she came back from surgery, they said to me she was poisoned . . . . Her ovaries were dislodged in her womb and formed poison. I was like, ‘Oh, thank you, Lord, that is what it [the dream] was’. That dream is over. Nothing is wrong with my daughter. She developed to time and did all of her milestones, including walking and talking and the whole nine yards as any average child,” she said.
However, Joy almost reached the peak of frustration last year when she went to the Ministry of Education to get her child into a special unit school. She left in tears because she was turned down by an official who broke her heart with what she termed “devastating words”.
“I remember walking at 5:30 one morning, because I walk every morning, and I remember saying, ‘Lord, you sent this child for a reason and a purpose and you didn’t send her without a blessing either. You promised to provide for her and protect her. I am just here helping you. Why is she not in school? That same morning, my girlfriend told me go back to the ministry and I went back.”
On her return, the professional marketing representative was met with a more favourable reception, and after discussions with that same official, her daughter soon began school at Ellerton Primary’s special unit.
“She is doing well. The people there are caring; they are loving; they look out for her a whole lot. I feel comfortable leaving her there on mornings knowing she would be okay. I don’t worry about her at all because I know that she is in the care of loving and supportive people,” said the member of the Ellerton Wesleyan Holiness Church, which has now adopted the unit at the St George school.
“As I tell people all the time, this is a journey that I would not wish for anybody. But I have two excellent tour guides: God and Jolaina. If God says to me, ‘Joy do it’, I do it. If he says, ‘Don’t do it’, I wait on Him. We tend to make a lot of mistakes and go wrong because we don’t want to wait on God.”
When it comes to her support system, Joys says her husband could not be a more supportive father who makes Jolaina’s special breakfast every morning, as she likes him to. Jolaina’s siblings are also very in tune with her, offering their helping hand and emotional support, whenever possible. Based on her experiences, Joy offered some counsel for mothers with special needs children:
“My advice for any mother who may be going through the same situation is to find people that you can talk to about your feelings, because it is not good bottling them up. Find a support group.
“I find that there are not support groups in Barbados. I find that we need a support group for parents of children with disabilities or special needs because sometimes you just need some person to vent your anger or you just need some person to talk to. You just need some person to understand and to listen,” Joy said.