This is an interview with Elena Lubova, mother of 4-year-old Daniil, from urban village Makarov, Kiev region, Ukraine.
– And tell me about Daniil? Let’s start with a simple question. How did he come into this world and your life?
– He was born in 2015 with a diagnosis of hydrocephalus. I remember his height and weight by heart: 52 cm, and 1585 grams.
– How did his birth go?
– No, it was a cesarean and I was in intensive care. It was Alex to see our child first. My husband is a hero! He went to the maternity hospital in Kiev in the wheelchair. This was more than 50 km: every day by minibuses, by hiking, or by public transport. He even went around the hospital without shoe covers. 🙂 And he could make it on time everywhere.
– And what about you?
– Oh! I saw my son for the first time only after 5 days. I was in shock! His small, reddish fists were smaller than a matchbox, looked transparent like that. I was afraid to pick him up. Immediately, he had been diagnosed with hydrocephalus.
– Let’s get back to this later. First, tell me, what did Alex feel then?
– He already does not remember everything. Now I ask him what he felt then, he replies, “How can I describe this feeling with words? Immeasurable happiness! The most beautiful child on earth! ”My husband is the best Dad in the world!
– Have you been offered to abandon the child?
– But we never even had thoughts of leaving or abandoning the child! Although, I lost track of how many people (and even very close ones) advised us to do this. We (me, and Alex) did not even have thoughts about life without Daniil.
– And what were the difficult medical moments in your son’s life?
– There were 6 operations in total (of which 2 brain bypass operations). One case of respiratory arrest. 45 days of resuscitation and a 30-day non-stop course of antibiotic treatment. This is in short.
– So, what happened after you returned with Daniil from the hospital? Please, tell us, how your life began in the format of young parents? Describe the physical condition and other aspects of this.
– We returned home with the baby after all the hospitals only 10 months after the birth. By that time, his weighed was about 7 kg, his head was 52 cm with the height of about 65 cm. He did not move; his small arms and legs were like a tightened spring: in constant tension, and tonus. He could not roll over, could not pick his head off the pillow. He just groaned like a duck.
– And what about your thoughts at that moment? What did you think of doing next?
– To live. Daniil had to be raised up somehow. How to do it? We did puzzle over this question: God sent people who motivated and supported us. Upon arrival at home, we had to do some weight gaining. So, we began to search for ways to do so: going from doctors for doctors for professional advice. We tried all sorts of different techniques at home. For example, massage.
– Frankly, our family – in fact – is 100% people with disabilities … What is there to hide? Raising children is always a challenge – I know it from communicating with other mothers like me, – it is much harder if the child is disabled. Yes, we (Alex and I) are working. Alex, despite the fact that he does not have one leg, has a furniture repair business. However, we cannot cover all expenses associated with the rehabilitation of the child with our income, which makes us dependent on help.
– Were there moments of fear for the future and for Daniil during this time, and if there were some, how did you overcome them?
– And who of parents have no fear for the future of their children? I have my personal fears too. If I die, how will Daniil be without us – in terms of socialization – and who will need him? … There are many fears. I pray and trust in God. It’s impossible without this!
– Elena, will you please advise – based on your personal experience, – which psalm of the Bible can be the best encouragement for parents of children with disabilities?
– Psalm 91 or 139.
– What about your child today? What achievements did Daniil have already?
– He began to stand on his feet, repeating individual syllables, words/ He learned how to collect balls in a box, and get them out. He became very active in terms of movements: fast crawling.
– And what is your son’s character like?
– Daniil is very affectionate – a “kisser”. He is active, cheerful, and sometimes loud, and mischievous, like any other child. He is curious, and, in general, he is the most beautiful, and dear beloved son for us.
-Does your son love water: swimming?
– Oh yeah! Very much so! We were at the sea the year before last, so he splashed in the water, till his lips turned blue, and, after leaving the water, he immediately climbed into the pool (inflatable).
⁃ Can you write something for people who donated finances to help you?
⁃ Thank God for every heart that helps us, and prays for us. Our Daniil is a vivid testimony of God’s glory, especially for us.
We are absolutely sure that the survival of disabled people is a challenge anywhere, and not only in Ukraine.
Over the year, the Salem Charitable Foundation paid for the corrective surgery for this child, several intensive rehabilitation courses, and other comprehensive care for this family. If we have the finances, we will continue helping the rehabilitation process of Daniil further in future.
You can become a co-author of a real miracle in the real life of a child with a disability through your donation by clicking the “Help” button, and use your bankcard to donate any amount in UAH.
Photo from Elena Lubova’s Facebook page and Valeriy Ionov.