I love someone with Crouzon Syndrome

You are never prepared to have children, much less to have a child with a special condition.
We always imagine the perfect son, surely you have also visualized and dreamed it like this:

• With clear eyes like the great-great-grandmother
• straight hair so you do not have to comb curlers,
• that is white like me, or tan with tanned skin and we save the money from the express tan,
  this and many other things we imagine, choosing the "factions and characters that we believe are the best and most beautiful of the generations even of yesteryear" ..
  Nobody expects the blessing of a child with special needs, in addition, what is the probability of that happening? ..

My pregnancy was a beautiful experience (perhaps my husband disagrees a bit about this, hahaha), quiet, without setbacks, and with the usual emotional ups and downs to which we are all prone.
Isabela came to this world one afternoon in December 2012. To know her was beautiful and impressive, my girl was born with Crouzon syndrome.

Crouzon syndrome is an autosomal dominant genetic disorder known as a branchial arch syndrome. Specifically, this syndrome affects the first branchial (or pharyngeal) arch, which is the precursor of the maxilla and mandible.
The most notable characteristic of Crouzon syndrome is craniosynostosis, as described above; however it usually presents as brachycephaly resulting in the appearance of a short and broad head. Exophthalmos (bulging eyes due to shallow eye sockets after early fusion of surrounding bones), hypertelorism (greater than normal distance between the eyes), and psittichorhina (beak-like nose) are also symptoms. Additionally, external strabismus is a common occurrence, which can be thought of as opposite from the eye position found in Down syndrome. Lastly, hypoplastic maxilla (insufficient growth of the midface) results in relative mandibular prognathism (chin appears to protrude despite normal growth of mandible) and gives the effect of the patient having a concave face. Crouzon syndrome is also associated with patent ductus arteriosus (PDA) and aortic coarctation

Reaching this diagnosis cost us a year of waiting and uncertainty. Isabela has more surgeries in the course of her life, than years of age.

In her few months and 20 days of age, she underwent a craniotomy in Venezuela to install a ventriculoperitoneal shunt system and fix the craniosynostosis.

A year later, she undergoes a gastrostomy, necessary to be fed enterally, after a month, she undergoes a posterior distraction surgery of the cranial vault, in which a cranial distractor device is installed, which was removed through another surgical procedure 5 months later.

During the removal of the distraction device, his bypass system suffered a rupture, so two days later he underwent endoscopic surgery of the 3rd ventricle to control hydrocephalus. Finally, at 2 years of age, she undergoes fronto orbital advancement surgery.

I can not say that it has been an easy road, however, with certainty and property I affirm that it has been full of blessings. There is still a way to go, and I am sure, as I have been since she was born, that every treatment, every surgery, is a step forward, it is a step on the rise towards improvement.

God does not give burdens that we can not carry, but if you are a special parent, I can tell you that our children are not burdens, they are not punishments, on the contrary, they are beautiful blessings, that teach us to value life in detail, and things that we take for granted.

When your child begins to babble, it is a sign from God, even when he does it 1 year later than the "normal", when they take their first step, it is a further blessing, it is another beautiful gift to value, when they manage to take a good pencil, or put together a simple tower, everything in your life is an achievement; quantify and value those blessings; and at the end you will realize that you have more to thank than to ask God.

My experience as a mother has been beautiful, and even after 5 years, I am surprised, and I can not believe that God in his immense mercy, has chosen me among millions of women to bless me with my little Isabela !.

Thanks for reading, and if you are another blessed parent or relative of a child with Crouzon, and you need some guidance or support, I can gladly help you !.

In the next post I will dedicate myself to tell more about my experiences as a mother .. Bye!