So Many Questions.

How can I explain all this life in only one page??? I could write a book…

Anyway, I will try to explain in a few words what having a kid with PMS is like.

After being married for three years, we were more than ready to bring a baby home. Things went great during pregnancy, nothing to worry about.  All checkups were normal and we thought we were going to have the dreamed life.

The journey began when he was two months old. He started crying almost all the time; there was nothing that could stop him. We found out he had refux. When he was 8 months old we started to get concerned as he couldn’t sit by himself properly without support, some issues like not looking at you when you were talking to him or listening to noises around him. We started looking for advice, started our visits with different doctors, which most of them didn’t have a clue what was happening with him as everything turned out normal on the clinical tests.

He started saying a few words (mom, dad, water) but then suddenly lost all of them till now. He could only make sounds without meaning. Walking by himself didn’t take him long, but he was clumsy and with very low muscle tone, he was bouncing and bumping everywhere. He wouldn’t notice people around him and didn’t want to be touched. This was the hardest part; wanting to hug him a lot and him refusing us, it often made us cry.

We had visited an enormous amount of doctors here in Mexico and none of them had any idea of what he and they were dealing with. It has been so hard to listen to doctors tell you that you are losing all your money hoping your kid can do things he will never do. Lots of doctors told us we should get used to the idea of having a Special Needs Kid and get a room fxed for him to live there as he will never be able to be part of society.

They have told us that SHANK3 was the main issue on PMS and that because of this (synapses can’t be done), he would never be able to process all the information we are giving him through therapies.

How can I express in a few words how hard it is to live with a little boy who can’t express how he feels; what he needs; what he wants; what he’s comfortable with? Living daily an awful journey where you need to be close to him as he won’t notice danger; he won’t feel if he’s getting burnt; or if he broke some bone while he fell on the playground, as he won’t cry or show any emotions? How to know if a temperature is because he’s getting a cold or because something harder is coming to his weak body? How can you make him understand that taking his pooh into his mouth is extremely bad for him? How do we get him to tell us early enough when he’s feeling sick so we don’t have to go to the ER because the situation lingered and got too bad?  So  many  questions…so  few  answers…

I don’t know if one day we might be able to answer some of these questions; but for now, we are sure that the only thing we can do for Santiago is let him know how much we love him and to make him feel secure while he is with us. For us, we will be patient, keep researching, and scream out loud when needed so we don’t break down as we need to be here for him. Well, we believe that something has been achieved with him and we are planning to continue working with his therapies and his supplements as they have played an important part on his life. His immune system has improved considerably and he doesn’t have the side effects of medications.