Help with Food
Text by Carmen, Philips Mother.
There are so many things to be written about the following chapter of my life that I don't know where to start... Filip Timotei Profiri, how could I include in words everything he is to us? So that I don't keep you in suspense, I have to tell you that around 2 months old, he was diagnosed with Down syndrome. I have to admit that I still don't know his clear purpose in our family, even after one year since his birth. I might never know clearly his purpose in our family and in my life. Often, we feel that we need to have things under control, to plan our lives, to live them like we want and how we consider to be better. Instead, we forget that we are not the ones controlling our lives; actually, we forget who gave us our lives. We forget that God is the one giving us life, keeps us alive and controls everybody's lives, whether we agree with that or not.
When the doctor examined my pregnancy, he recommended a triple test; I analyzed the situation and I decided not to take the test. I knew several mothers who received false news after this test, they worried a lot, but gave life to perfectly healthy children and I didn't want to go through such period. Within our family, we would have never approached abortion. It could have been more serious than that and any anomaly our child would have had, as long as God brings him into our life, I'm not the one who can say NO. Evil doesn't come from God, this thing is very clear to me. But still, when we encounter it in our lives, so many questions arise. God transforms evil in blessing only when we give Him the occasion. And the blessings that come from Him can cover for any bad thing.
I gave birth to both my children by C section and due to the post operatory recovery, I interacted with them as babies a little later. The day following the birth, when the doctor who assisted me explained to me that there were some problems with my baby, but there was nothing confirmed, I thought he was being ironic. But shortly after that I could read on his face a real empathy, a suffering he wanted to share with me. But there was no room for deception in my mind and in my heart. And I think that there has never been room for that and it will ever be. This doesn't mean that I don't worry for my child, for his health, his future, or that I don't admit that he is different from the others. It is true that he has Down syndrome. This syndrome is among the most common chromosomal disorders, which means that it is installed right at the moment of conception. Neither the mother, nor the father has any power to prevent this thing from happening. There is nothing I could have done differently. I would like to say that you will meet persons, even health professionals, who, unaware of it, but well-intentioned, will try "help you" find a cause for this syndrome in your child: maybe a cold you had in the first semester of the pregnancy, or maybe other untreated health problems and the list can continue depending on the general knowledge of that person. I write to you as a person who has read and has discussed with specialists in this field, just to clarify this matter. NOBODY, NOWHERE IN THE WORLD, CAN ACTUALLY SAY WHAT IS CAUSING THIS EXTRA CHROMOZOM. THIS CAUSE CANNOT BE IDENTIFIED FOR NOW. SO FAR< NO ONE CAN ANSWER THE QUESTION "WHY?" and in this case, I beg you, don't bend the ear to the opinion of your neighbor, of the seller at the grocery store or even of the teacher or of the priest, related to this subject. This issue is really unknown, take it as it is and don't search for reasons to apologize or to blame yourself, thus carrying a heavy burden. You have many more important things to do. For example, first of all, enjoy this new baby in your family.
The most difficult thing for me was the fact that during my stay in the maternity I was approached by a doctor to discuss the possibility of this syndrome only after 4-5 days, during which I knew that something might be wrong. Because the doctors tended to avoid this difficult subject, without an actual diagnosis (DNA analysis can take one month), I imagined much worse things. And I think that the difficulty in taking care and raising a child with several problems is in the fact that we don't have the situation under control.
There aren't actually specialists in the field. Or if they do exist, I didn't get to meet them and if their work I not accessible, I don't see their final purpose... Star of Hope Foundation had a very important role in Filip's development. But I want to mention that the resources they have are limited, both regarding the personnel and the information given to the parents. Within this foundation, I went with my little boy at physical therapy meetings since he was 2 months old. He could sit independently at 8 months and now, at 1 year old, he is able to spin in circles crawling and to stand for approximately 5 seconds on both his feet, but he still can't walk. I also interacted with more mothers, whose children were older, and I now have a more concrete opinion regarding this field. I made a list of actual needs for which we need to find solutions, answers so that our children grow and develop in a society that will accept them and want them. And this can happen starting with a right mentality of the mothers first and then of the specialists who work with the children, who have an important message to send to the next generations, and getting to the average people in the society we are in.
Personally, I was profoundly hallmarked by the words of the genetics doctor who diagnosed my boy during our stay in the maternity. I honestly don't know if he shares the same principles for the moment, but I can share with you what he told me when we went to his office to give us more details on the syndrome. We were told that "in other countries, they are integrated as adults, but this thing is not and it will not be possible in the following years. Statistically, their IQ will not exceed the IQ of a 6 year old." I refused to think such a thing and I am glad I did that, but I wonder which of the mothers who find out this thing accept it as it is and leave home thinking that they gave birth to a handicapped child, who will never manage to integrate in the society. At that time, I knew about the existence of a medicine student with Down syndrome in Iasi, but I decided that it would be better not to bring this into discussion, as I could have been labeled as a person lacking connections with reality or not accepting the fate of my child.
I found the geneticist doctor from the children hospital in Iasi very loving. When he started examining Filip, at only 2 months, she took pictures of him, she talked to him, she treated him as a person and I felt that she was really there for the patients. In other medical clinics, most of the doctors only discuss with me giving the impression that my son is not even there. It might be a small thing, but as they grow up, children feel such differences.
We like to be the masters of our lives and of our families and, in those moments when something is not clear to us, we go into a crisis, in depressions because of our imagination and our lack of faith in God. When we take care of live alone and we encounter such problem, we realize how limited we actually are, and even so, many people still try to find causes, solutions and ways to fix the problem. Therefore, there are no specialty paper works, no specialists, no plan, and no better perspective in this field (Down syndrome). Don't think of me as a negativist person, we are far better than 5-10 years ago, when children with Down syndrome were locked in the home or isolated in special care centers, but wouldn't it be better be wonder: If God gives us all life, if He takes care of each of us and, in all of our weaknesses He gives us strength to overcome life's circumstances, why would she change His attitude about the persons with Down syndrome? And if God doesn't have another attitude for them, why do I think of myself as superior and think of them as inferior human beings, a burden for the family in which they were born? No, please, do not accept such attitude, not from your own mind, not from anybody. It is just another life circumstance which can be overcome and, overcoming this struggle which is taken at a psychological level, you will be able to really enjoy life together with your own family.
If this story moved you please consider supporting our conference series in Romania. A series of educational workshops that equip mothers of handicapped children the tools and attytude to care for thier children all while building local groups for individual support for the mother and the child.
