The story of Victoria Panasyuk – mother of Yegor (mixed form cerebral palsy).
We are a family of four: me, my husband and two sons. Yegor is the youngest. And we all try to make his life as bright and fulfilling as possible.
Our first period of active medical rehabilitation was lost, because we did not know, no one told us that Yegor had been injured during childbirth. At the age of six months, I saw some developmental delays. I found out later that he was holding his head strangely, and it was due to spasticity. There was no competence from the doctors. No information was given. And only when he was 8 months old, during a common cold, one of the doctors said that we should pay attention to the pace of development and undergo an examination. Then we were already diagnosed with a disability and obvious disorders were already visible.
My husband and I immediately started looking for a solution to our main question: “What do we do next?” It is now that we realize that without finding the right, professional approach, we were rushing in all directions. Our rehabilitation looked like such aggressive treatment. We were constantly moving from one rehabilitation center to another. After my maternity leave, I did not return to work. And then I was diagnosed with cancer, and all the doctors said it was due to stress. My husband was very supportive during this time. Then there was a long period of my treatment, surgery and rehabilitation until it was confirmed that the cancer had receded.
Our happy life
It all came to us over time. At first we were looking for a healthy life for Yegor, but we should have been looking for a happy life. In fact, we quickly went through this gap between the stage of “despair” and the stage of “acceptance”. We see this path as God’s providence. Each stage was necessary for each of us.
Now Yegor is studying at school. We take him to Kyiv every day. He constantly participates in various competitions, socializing, attending theaters, concerts, and master classes. Yegor is very socialized.
It was important to us that we found the school where Yegor had once been enrolled. There are wonderful specialists working there. Thanks to them, we switched from individualized learning to classroom attendance. And he is still studying there in the 8th grade. Up to 12 teachers work with him during his studies.
Our main task now is to teach Yegor how to communicate his desire, to explain to any person what he wants and what he needs now. At the moment we are working as a family to ensure that in time Yegor will be able to live independently. He is living as best he can now, and we can still be his support. But someday our children will live without us and we need to prepare them for this.
Inclusion
It is important for our country to go through this stage of including everyone in everything. We open the world to our children: we go to restaurants, we go to the theater, we just walk down the street. In the same way, we show everyone else that it is normal for a child with a disability to go for a swing or visit a cafe. Breaking stereotypes – that a person with a disability is not a threat to others – is what we can do now.
Life in its fullness
Yegor is 16 now. We have been living with his diagnosis for almost 16 years. Over time, the worldview transforms. As the child’s age changes, his or her needs change, and it depends on how much of your life you need to give to the child. And if we think that while the child is very young, and we need to carry him or her in our arms all the time, it is the most difficult part – It’s not really true. It becomes really difficult when your child turns 18 and starts to develop sexually.
Therefore, my demands on my child’s life have changed over time. If once rehabilitation was the most important thing and in the first place, now the first priority is education. Then socialization. Then rehabilitation. Next, it is very important not to miss or forget such a point as the child’s rest. Everyone needs time to rest, to not communicate with anyone, to switch their attention. All the more reason for our children, who are constantly actively involved in everything, to have some time to rest and gain new strength, to be alone, just lie down, and miss new communication. There must be consistency and this is important. Rehabilitation cannot last around the clock.
Life in the war time
We all slept through the beginning of a full-scale war because we did not believe that such a thing could happen in the modern world until the last moment. We hadn’t even prepared anything, hadn’t stocked up on food, hadn’t filled up the car. Until February 23, I assured everyone that there would be no military offensive. But the Russian columns were moving towards us and in just two days they got very close.
Then there were several days without electricity and communication. Everything in our house was running on electricity, and we even spent a few nights at a neighbor’s house because she heated her house with gas. We were very afraid that Yegor would not freeze. The shelling became more frequent, there was a complete information blockade, we could not find out any information about what was happening around us, all the phones and flashlights were dead. The closer and more frequent the explosions became, the more we realized that we must leave. We organized a convoy of cars from our neighbors, managed to get in touch with those who had left earlier and started evacuating directly across the fields, following their route tips.
First, we managed to get to Rivne, and from there we moved to Ivano-Frankivsk region, where we spent the entire time of our temporary relocation. It was here, when we calmed down a bit in our communication with Yegor, that I realized that the fact that we tried not to use the word “war” at home, and to behave (as we thought) more calmly, did not really help.
– Did you realize that war had come to us? – I asked.
– Yes, – Yegor answered with a nod.
– Were you scared? – I continue.
– Yes.
We really all tried to keep ourselves together so that Yegor wouldn’t be afraid or worried. But apparently, we failed. None of us were ready for this.
In June, we returned home. After we knew for sure that our house had survived. We even got in touch with the people who were filming our town from drones through our fellow villagers, and they sent us a photo of our surviving yard. When we returned, there was a lot of work to do to restore it, our roof was completely displaced from the hits to the neighboring houses.
The most important conclusion for this year is that nothing can be put off until tomorrow – this has taught me a lot and now changes our lives in every way.
A mother’s life
It is important that your personal life does not stop at the moment you start raising a child with a disability. Look for something for yourself, for your development, for your personal life. Yes, our children will always be our priority. So, in fact, this is a very important art that parents of our children must master – not to lose themselves.
Since Yegor turned 4, I have been constantly learning and involving myself in various projects. Since 2010, I have been actively developing in the area of raising a child with a disability. I was very interested in all this. At first, it was just on a charitable basis, and then the Special Ones project appeared and many other things important not only for our family.
“Lighthouse”
Family is the basis of our life. And the task of parents and relatives of a child with a disability is to LOVE, first of all, and then to organize the processes of education, socialization, and rehabilitation. You are not able to do all this without the help of specialists. Find an organization where you can get the full range of these services. This will help not only your child, but also your family as a whole..
We chose the Lighthouse children’s center in Makariv. It is not far from our home. The conditions here are excellent. It is always warm and bright. Special transport helps us to attend classes with Yegor. The basement is essential during martial law. And there is an elevator for us to go up and down in a wheelchair. And, of course, we have specialists who help us a lot to ensure that everyone in our family is living a happy life.
Therefore, this center does irreplaceable work, and by irreplaceable I mean not only rehabilitation and socialization, but it also helps us live life to the fullest.
Each of you has the opportunity to be part of this life-changing work, and to be part of the “lighthouse” – a place where needs and opportunities meet, and children with disabilities and their families experience joy previously unavailable to them.
We have the desire, the people, the place, and the transportation needed to make this possible. What we don’t have are the funds to cover all the current expenses. Any amount means a lot!
You can become a partner through the «how to help» section on our site.
With love and prayers for you,
the “LoveHasNoBorders” team.
Join us. We are doing something important. Children cannot take care of themselves, they truly need our help.
If you have not yet become our partner, we invite you to join the cause of goodness and mercy. Believe me, it’s worth it.
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