Occasionally when I do not know where to begin the text. But today – this is the case. Because this topic – How long leg fracture: like grown together, like go, but sometimes whines and does not sleep. It hurts.

… As holidays and birthdays passed wish each other health – the very unique value, which is very difficult or impossible to buy for money. Consciously or not, we believe a priori good health, makes it easier to satisfy higher order needs – self-realization, self-actualization, recognition in the society. In addition, health disadvantage – a restriction and pain. In human nature to desire to avoid it.

When I was waiting for the first child, the biggest fear was to give birth to his patients. I was not yet 25 years old, and difficulties in the way of very frightened, though it has happened. Pregnancy was easy diagnosis did not identify pathologies, the son was born exactly on time. On the third day of his life, doctors discovered bleeding disorder and greater intermuscular hematoma. From the hospital, we were transferred to another hospital, after a time – into another, but not immediately, but only after a year and a variety of surveys have put the final diagnosis: severe hemophilia.

In this disease there is no blood coagulation proteins from one. Where healthy people get off dislocation, hemophilia get bleeding in the joints due to the bursting of the container and continues to bleed. Hemarthrosis – it is not only hellish pain and sleepless nights. The inner shell of the joint immediately changed, broken limbs and mobility of changing her appearance. Over time, it can and does stop to fulfill its function, forcing the person to sit in a wheelchair.

In addition to the risk of suffering from joint hemorrhages exposed muscles, internal organs, the brain. In the latter cases may be fatal. Often the onset of bleeding is difficult to observe directly, and then takes a lot more patience, medicine, rehabilitation procedures. Modern medicine for the treatment of hemophilia (or rather replacement therapy, for incurable disease) – the so-called clotting factors. Administered intravenously approximately two to three times per day, if the bleeding has occurred, and 2-3 times a week – for prevention. It allows you to transfer the disease in a more mild form, and to avoid or minimize the complications mentioned.

When my son was born, it was not any opportunities for prevention.

Man … it is difficult to accept the loss, so it works. Loss, especially sudden, can bring a lot of different emotions: grief, sadness, grief, anger … They are more than the mind can survive, let simultaneously – it’s too painful, too unbearable. Feelings are like trapped inside, not weathered, locked. If you do not release them, living their grief gradually, they are borne by the weight, change the emotional and behavioral reactions.
It seemed to me that I should be strong enough to cope with all this, so little grieved. Although the loss was palpable: I have lost not only a sense of security and the opportunity to enjoy motherhood without the constant sound the alarm, but also freedom of movement, the ability to work, to have a different standard of living. For a long time I lived in the hope that the doctors were wrong, that the disease is not so heavy, that one day I will wake up and realize that this is just a bad dream …

However, it was a reality. Moreover, it became harder and harder: the majority of children with hemophilia are very active. This is how the compensatory function of the body, helping to regulate the use of epinephrine hemostasis. Also for these children is characterized by a tendency to various dysplasia, dislocations. And now imagine a child himself, who receives treatment only on the fact of bleeding, and that not once, but that is everywhere climbs and jumps, because its full of energy! However, bleeding can start spontaneously. There was one year when we went to the hospital eight times: all the “leaking” one of the ankles.

After such a massive treat, and this at least a week “transfusion” for each case of bleeding, disease her son moved to the inhibitory. This serious complication in which standard treatments do not work, need special drugs. If we consider that one vial of factor costs about a hundred dollars, and one transfusion is required, for example, two or three bottles, and so – twice a day for a week, the amount obtained by astronomical. So, for complications of the disease requires special medication, which cost several times more than usual.

The clinic, which we are constantly accessed, there were only the usual clotting factors, and in short supply. As competent doctors.

… Reality has a healing effect, when one becomes able to accept it. Accept reality – it means to acknowledge the problem and the associated restrictions, difficulties, shortage of various resources. Only by recognizing that a problem exists, we can begin to take steps to address it, as it becomes clear that it was addressed. However, adoption and is very great complexity. It is very difficult to accept the fact that you are something forever lost, something you can not and will never be able to, something you do not get and you can never get.
Three years later I finally managed to do it partially. Humbles a lot harder if you wait on my own great achievements in their career or other skills and knowledge, not being able to make himself any. I got in touch with the Moscow Hematology and public organizations at various levels, regularly addressed the Novosibirsk authorities to provide the child with necessary medications. Anyway, we give them over time – even outside the clinic. When her son was three years old, I started to give him intravenous injections at home.

This, of course, does not solve all problems. The child was plump, and there it was difficult to thin vein. And sometimes I had to do five shots a day. The drugs were given little, and each case malaise (and small children can not just give the signal that occurs) plunged me into an abyss of despair: drug use, or wait? If you wait, then it might not be enough drugs for a full recovery, and relapse threat. If prick, then, if it was just the pain of osteoarthritis, then it might not have enough drugs in this bleeding.

People with hemophilia who receive permanent preventive treatment, almost unaware of these problems. While such care (as well as qualitative observation of hematologists and other specialists) can be obtained only in Moscow. But to move, I still could not find the strength. It is difficult to describe all that accompanied me during those years: from an annual re-examination in the commission on disability (and all related actions), and observation of physical and mental suffering of a child, to the plight in terms of finances. But you never know! ..

But the hardest part of all this was to accept the potential loss of his child at any time.

Meet with the thought of death, no one likes. Death – is the unknown and the uncertainty, even if you believe in an afterlife. Death – it is parting with those who you love, it is the potential loneliness. This non-existence, which is opposed to the psyche. But it was the thought of death, and limbs – both yours and your child to whom you gave birth not only life but also death – gives the most powerful vital resource. Live! To live here and now. Feel life all the senses, and to meet with all those that she prepares.

When due to the active immersion in psychology and gain experience and I managed it, we are still left for Moscow. There we got everything we wanted, and more. Our situation has changed dramatically, despite the loss of all communications and home. The son grew up, and he puts himself injections, and the disease makes itself felt not so often. It is tempting to think about it at all, displace beyond consciousness. Especially at the thought of depending on expensive drugs that provides state of falling into crisis. However, I know that this is not worth doing. That encounter with reality, of course, and the spectrum of hard feelings helps you find strength to a full active life.