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- When someone looks at Julia, who has an unemotional face and an open mouth, from which, unfortunately, saliva sometimes spews, he has the impression that he is dealing with a person less intelligent than Jula really is - said Monika Sobczak, mother foster care for Julia suffering from Möbius syndrome and more. Due to this condition, she cannot give the other person a smile or wink, but she can infect her with a lot of positive energy. He is a great example of how to fight adversity and never give up. Get to know the story of an exceptional love!
Anna Tłustochowicz: Your story proves that miracles do happen. What kind of person is Julia?
Monika Sobczak:Julia is a wise person with a great sense of humor and distance to herself. Despite her disability, although her appearance may not indicate it, she is very open-minded and makes contacts quickly. For example, to the extent that more than once when we wait in the car for the light to change, Jula is able to open the window and hit her wrist with her fingers, asking the driver what time it is next to it. How do you react? Of course, he replies that there is both this and that. Julia has no qualms about establishing interpersonal relationships. Besides, she is a very intelligent person and has her own character. She is stubborn - when she decides something, she strives for it.
I heard that Julia can also throw jokes on her sleeve?
Yes, of course yes! Her favorite question is "do you like me and not Monika".
She has such a positive attitude towards people and the world, despite the fact that she does not speak and suffers from Möbius syndrome. What is this disease?
Simply put, there is no emotion on Julia's face. It shows no signs of expression. In addition to this Möbius syndrome, Julia also has an open mouth and immobile eyeballs. When someone sees Julia for the first time, they will think that she is a less intelligent child. It may be seen that way, but it gains on getting to know it more closely.
What did Julia's first years look like? What was the way it was before you hit each other?
I don't have detailed information from her first years of life. As far as I know, Jula gave birthwith cerebral palsy, moderate intellectual disability and Möbius disease.She stayed in the hospital for a long time before going to an orphanage in the Tri-City.From the beginning she had problems with sucking and swallowing. When she was six months old, she had a PEG probe inserted, or a gastric tube, and she is fed by it to this day. Due to her breathing problems, she also had a tracheostomy tube. Two years ago it was removed.
Why was little Julia moved from an orphanage to an adult hospice?
In normal orphanages, there are no conditions to look after such sick people. Julia was a child who needed specialist care. I think that's why she was sent to an adult hospice because there was adequate staff and more medical facilities than in an orphanage. At the age of 5, Julia went to a facility established by the "Dom w Łodzi" foundation.
You met Julia in this orphanage?
I have been volunteering at this facility. I met Julia when she was 6 years old.
What was your first meeting like?
I was at a meeting with the volunteer coordinator. Then Julia left the playroom, accompanied by her aunt (employees of the orphanage - ed.) And one of the charges. When she saw me, she threw herself on my neck and did not want to come off. This was our first meeting.
Sparkling at first sight?
You could say that. It is the same among children as among adults that we like some more and the others less. Children choose volunteers for which they feel more sympathy. Julia and I developed a bond almost immediately.
How did you communicate with each other, noting that Julia does not speak?
While playing, Julia would point out for example which toy she wanted.She also learned Makaton, i.e. alternative communication.These gestures are a bit similar to sign language. If there is a very disabled child, he or she may show gestures in pictures. And once Julia was hospitalized, she was suffering from pneumothorax and spent a month in the ICU ward. To spice up Julia's time, we drew different things. I remembered colors from my sign language course, so I started teaching Julia them. She caught them in no time. Together with my friend and the teacher from school, we started showing Julia more things and in this way we made it easier for her to learn sign language. She gained a tool to ask questions, to express feelings.
From what you say, Julia shows a great desire toscience, to discover the world and, most importantly, is not afraid to take up challenges.
Julia never had to be forced to study. Perhaps Julia felt that sign language was something that would bring her into contact with the world. Julia has a phenomenal memory - she knows the dates of birth of her aunts and uncles perfectly well. She wanted to learn new words from herself. Julcia also has a physical disability and it was necessary to position her fingers properly. And now? Julia is great at speeding. Well enough that I assigned it to a school for deaf and deaf children, where they use sign language. Easily communicates with teachers and children.
Did you see Julia often?
I used to come to the orphanage on the weekend for the scheduled duty. At the beginning of my voluntary service, I felt very sorry not only for Julia, but also for the other children. All of them were disabled. This was also the nature of this orphanage.Later, however, I started to look at Julia and the charges as normal children.Diseases receded into the background.
How did Julia's treatment go?
Every day Julia was rehabilitated in an orphanage. We also started looking for help for Julia. About 10 years ago we came to Warsaw to see a very good doctor who said that the lower jaw had to be pulled out. Julia was then put on special distractors for the mandible, but unfortunately they did not help much.In order to improve the speech apparatus, Julia also worked with a speech therapist - thanks to these classes she started to talk a bit. , that's 90 percent. I understand. Sometimes an outsider is also able to understand individual words that Julia says.
What happened next?
We fought for Julia's face all the time. In Olsztyn, she had a seriousankylosis removal surgery, i.e. ankylosis of the temporomandibular joints.Both we and the doctor hoped that if the joints implants were inserted, it would not be an obstacle for Jula she could close that mouth normally. It turned out, however, that the nerves and muscles were not working. In Möbius disease there is paralysis of the craniofacial nerves. So that Jula could shut her mouth a little if she made the effort, but it wasn't permanent.
Julia knows perfectly well that the treatment is for her good. It is a great example of how to fight adversity. How did you become a family?
To be honest, it was probably from that moment, when I started teaching Julia sign language, that this bond between us became even closer. Then I started to think about taking Julia tomyself. I was not ready for it, both in my life and in mind. It seemed to me that it was a big undertaking, so the decision had to be well thought out.
What influenced your decision?
The orphanage where Julia was staying has left several teenagers. These young people lived, inter alia, in nursing homes. When Julia was 15 years old, I was scared that a similar scenario might happen to her. I couldn't imagine it. But perhaps the biggest stimulus for me was the time we spent together in the hospital in Olsztyn. Then I looked after Julia before and after the surgery and during her rehabilitation.When I saw her fight incredibly bravely and thought to myself that this story couldn't end this way, Julia would end up in DPS. My heart couldn't stand it.And then I made my final decision to be a foster family for Julcia.
How did you share your decision and what reactions did you encounter? During this time, have you received a lot of support and encouragement from your family and friends?
Definitely! Everyone knew that I was attending an orphanage as a volunteer and that Julia was there and she was very important to me. Some people, when they heard that I want to become a foster family for Julia, took it very naturally.
What is your relationship? More parental: mom-daughter or definitely friends?
More friendly, but there are times when I have to become a parent for a while to show her the right path. Julia doesn't want to talk to me, Mom, and I don't want it to be artificial and uncomfortable for her. He calls me by name: Monika.
How does Julia function now?
In general, Julia is quite good when it comes to cerebral palsy. Moves normally but lacks eye-hand coordination. He also has problems with gross and fine motor skills - in the sense that he will not run or jump. She also has a hard time holding a pen, but she is working on that with a physical therapist.
How does she handle rehabilitation? Does he have moments when he is fed up with everything?
Julia is very brave.She has been in hospitals from an early age, so I can say that she is seasoned in battle.If there is such a need, she sticks out her hands for punctures. Referring to the procedure I mentioned earlier, Julia endured it very bravely. She was very swollen and sore after him. The day after the surgery, she got up to the toilet and I told her not to look in the mirror. I didn't want her to be shocked to see the bruiseson the face. But Jula didn't listen to me, she looked in the mirror, she only patted her forehead with such an eloquent movement: "Oh mother, how do I look" and went on.
Do you combine your work with raising Julia?
Since we live together, we are good at combining work with school. The pandemic changed our daily schedule somewhat.Last year, doctors diagnosed Julia with another disease - aplastic anemia.It is a disease related to the malfunctioning of the bone marrow. Jula has very low scores on red, white blood cells, and above all platelets. This affects her immunity. For 2 years, Julia has been teaching individually. The doctor is afraid to send Julia to school, saying colloquially that she would not get something.
Doctors used three therapies for Julia. - none of them brought any results. Bone marrow transplantation is a very risky solution due to the girl's other diseases. That is why the doctors proposed a therapy that is not reimbursed. Monthly therapy - one package of the drug costs 12 thousand. zloty. Does this drug work?
Julia had to have blood and platelets transfused monthly before taking the drug due to the very low results.Since Julia started taking the drug, the results have stabilized.For now we have the funds to buy this drug. The doctor wanted to add one more immunosuppressive drug to the therapy, lowering immunity. However, she had concerns about having to prescribe it in the time of the pandemic. The doctor is in contact with the sub-regional Center of Pediatric Oncology Przyladek Nadziei in Wrocław and we will see what will happen next. If we do not have the funds for this therapy, it is not known whether it will eventually end with a transplant.
Are you afraid of this transplant?
Before talking to my doctor, I used to think what all these drugs and therapies are for. After all, it would be easier to perform a bone marrow transplant right away, but it turns out to be not that simple. As the doctor explained to me, giving Julia chemotherapy will make her body completely defenseless. Any infection could be fatal for her and I realized that a bone marrow transplant was very risky after all. Therefore, if an alternative method of treatment is possible, we act to prevent Julia from having a transplant.
So in this situation Julia spends most of her time at home?
Yes, when I'm at work, the babysitter takes care of Julia.Julia is doing really well for the diseases she has.Unfortunately, she will never be able to live alone. The help of the other personit is even necessary. It would be difficult for Julia to go shopping - she doesn't know money. Besides, Julia is very trusting, so she could become easy prey for fraudsters. She will need help for the rest of her life.
What does Julia like to do in her spare time?
She loves to listen to Christmas carols, so we have Christmas all year round in our house. He also likes card games. She is very happy when our guests come to us. Going to the cinema and riding the roller coaster is also a lot of fun for Julia.
What is it like looking after someone who lives with Möbius and other conditions?
I don't focus only on Julia's illnesses. I see in her primarily a young and adult woman. Diseases are and will be woven into our lives, but they are in the background. I do not skip this topic and I do not underestimate diseases - I always explain everything to Julia so that she is prepared for treatment. Nevertheless, I try to find harmony in all of this.There have been difficult moments, but I always look positively and I hope.In my opinion it is very important to achieve this harmony and a positive attitude.
I think you are very lucky to have hit each other in life.
Oh yeah! As I said, Julia has brought a lot of good into my life. When someone hears about the fact that a person adopted a child with disabilities or became a foster family for him, he most often thinks that it is a sacrifice.I do not feel that I am losing anything, on the contrary - I have gained a lot. Love, closeness, friendship and, above all, a sense of meaning in life. Julia infects with positive energy.
What can I wish you? Certainly he alth, but what else?
More positive attitude and good energy around us. That those who are with us may still accompany us. We have great friends and we absolutely do not feel alone. We know that they are around us.
In summary words: our conversation, despite the difficult topic, turned out to be a large dose of positive energy. Thank you!
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