2-year-old Hope is the extensive development of the disorder and an incurable disease of the brain - the parents were divorced, so tired of their everyday life: we Live in a force on the edge of our

Finland has tens of thousands of special children's parents, who live tired of his extreme limits. 2-year-old Hope's mother told the evening newspaper, what their everyday life is.Hope from the mother's arms for the first time after giving birth to three days old. Iida Laihon home album

Petteri Pesonen were two years ago, the expected family allowances eldest son Hope at birth. Soon the baby happiness alongside the stepped care: Hope gave birth pneumothorax and he was diagnosed with a heart defect. Pneumothorax better soon and that the heart failure was fixed 1-year-old.

the baby years with the Hope found in addition to the diverse developmental and rare neurological disease, Arnold-Chiari syndrome, where the little brain running down the spinal canal, as well as the resulting hydrokefalia. The last Hope has begun to explore the hearing loss. In addition to these, the need for treatment will increase the most common children's ailments, i.e. allergies and atopy.

– Hope is hypotonic, i.e. muscle taut is soft. Motor skills he has learned pretty very own readiness in relation to each, but it would complicate some things for the body to carry ever since. Presently, however, she walking independently, Laiho told 2-year-old Hope of development.

in Everyday life I Hope ill see more clearly up as tired as. For example outdoor exercise session takes only twenty minutes, before Hope gets tired of doing.

– It will affect, for example, so that's not very often be left further away from home because it is a Hope hard. Playmate of seeing is therefore limited, Laiho says.

in Addition to the family routine punctuated by frequent hospital visits. Only went during the fall, control, monitoring and emergency visits have been every week.

Five-month-old Hope practiced the adhesion of the mother and grandmother of the fingers. Iida Laihon home album of the day home everyday challenge

in August, Hope started kindergarten, but even if all has gone well, it is still challenging and heavy. High absenteeism of course, also affect parents ' employment.

– currently, my husband will be 65 % and I'm still so far 80 % of the working time, we can't do any more, but the second should be reduced even more. We have applied for caregiver support. Everyday there's more balance, that all can be, Laiho notes and thank the parents ' employer flexibility and understanding.

Laiho is hopeful that Hope with the increase in emergency room visits decreased and, in time, find the Prospect the appropriate way to be in kindergarten, when everyday life stabilizes.

– of Course, the development problems are permanent and still there is no information about what they will bring because Hope is so small.

Hope practiced standing Petteri-father with a 1-year-old. Iida Laihon home album tired parents

the Current problems were not parents known even during pregnancy. After the birth of the future starts to become a little wind, but Laiho told that the parents understood the seriousness of the situation immediately. Information increased during the first year.

Years ago to understand myself for the first time, that the situation is not going to change by magic; it is a longer term issue. It has been with us heavy and required adaptation.

Initially, the parents are also not able to get the right support for themselves. Laihon according to the family had until this fall advice on choosing the right forms of support to apply for.

– So far, we have mainly struggling managed to find myself a suitable peer support and assistance in everyday life. Because we do not have support networks here, we have had to make do mostly alone, Laiho says.

the question of how parents themselves can, Laiho laughs and sighs.

– So. We are tired, it is a fact, Laiho said.

Laiho recognizing parents live in the power of his edge in Bahigo the past two years. Bad nights because the parents are exhausted but are trying their best to solve their problems, which are able to influence.

the Hope of recovering from brain surgery in October 2017. Iida Laihon home the album of the difference,

One such solution was a relationship closure.

– Yes, this situation was osavaikuttajana that we ended up getting rid of. Got the feeling that the everyday life of the bike too much this thing around. The difference, we both got more in their own space, and it has helped you to cope.

Laiho tell you that I Hope the situation because they don't have a contact time alone.

the Last time we got to be alone for a longer time in October last year, when Hope had brain surgery. It's not any quality time to be with you, Laiho smirk.

They decided, however, to take a solution-oriented perspective - it's better this way right now. In this way both have been better able to take sometimes a break in the load on family life.

after the Divorce, Hope was left to live with the father, but in good between the ex-spouses spend still plenty of time together Laihon treatment in the Hope of this at home. This family solved the situation, so that Hope could live in only one in a familiar home.

Such a sunny viikari Hope is now. The picture Iida-with my mother. Iida Laihon home album support the provision of deficient

Laiho can't yet say whether society provides support to the special child in the family for sufficient, because part of the search process is still in progress.

But at least it support, or information available form of aid, is not readily available. Although we have ourselves been special medical care customers all the time after the birth, no one there either not advised or given a hand to guide it, what kind of support we could get. All you got to dig yourself or information is received the peer districts, Laiho criticized.

He also told the parents to belittle the initially how in a difficult situation the family to live everyday in every moment.

and Then to think, that he however, for example, eat by himself and not through a tube. But, yeah, our life is really therapeutic, and it includes a lot of extra things, even though they are no medical measures. Therefore, we are not self-understood that we are entitled to support when they are not us.

All welcome and needed Laihon would help and monitoring the child's treatment.

– we Need to take care of Hope alone. Especially when you become ill, provided we shift our so, that we take care of him by turns. With him there must be literally present in every second, therefore all the household chores are left for a time to take care of. If there would be two adults, a normal everyday bike would be better.

their Own stamina and well-being Laiho and his ex-spouse take care of sport, which is both important to the spirit hole. Power they also get their good season when Hope can well.

Especially now, in autumn, they have been few and far between, so they can enjoy when they hit the point.