During our stay at the NICU we got to learn quite a few things about our son, and about ourselves. The newborn hearing test was performed there. We also found that he had difficulty feeding (that is all good now), that there are still good people in this world ready to help, that not all doctors are jerks among many other things. Here we got introduced to a wonderful program called Early Intervention.
The Early Intervention program is designed to provide children with special needs with therapy and support to help them move along and reach milestones. Right there we got assigned a coordinator and we were told of the types of therapies that would be available to him. The people that work on that program are wonderful, and we are still in touch with some of the therapists we met then. This program only runs until the child is three years old and then your support goes through your town's school district.
The time at the NICU was a difficult one. We slept in rooms that they have for parents, only left to come home and get some clothing and take a shower. The rooms there are tiny, just a twin bed and a rocking chair. Our conversation while on the car and at the house were tense as we felt the weight or the world on our shoulders. You need to talk about what is going on but you really do not want to, and you try to fake sanity as much as possible although it does not always works.
I have to make a little pause in here to showcase some of the stupid in the world that make parents in this situations go nuts. As I said before, we spent 10 days in the NICU with very limited contact with the outside world. Unbeknownst to us, someone from a government agency was calling home to make arrangements for us to have Seb's hearing tested, a test that was done at the hospital but not communicated to this person. They made calls almost everyday and left some messages on our answering machine. When we were discharged and got back home with our son we went on to check our answering machine. This person left a series of messages that culminated with on threatening us with Child Protective Service if we did not reply. My rage went from 0 to 1,000 in an instant. I called back and let him have it. I believe I gave him no time to reply or make any point before I hanged up the phone. We also contacted our new coordinator so she can get all this taken care of. People should remember that there are times when is impossible to return a call and even though we know that there are a lot of irresponsible parents out there, some are just going through hell.
Ok, back to the topic. On the last day of our stay at the NICU, the hospital sent a social worker to finish up the Early Intervention paperwork and give us more information. This was the first time I heard the phrase "Special children have special parents". I was shocked after she said that and my face showed it. She looked a little confused wondering how is it possible that such a wonder phrase would make someone so confused. After a brief pause she asked me why was I so shocked. I believe my reply surprised her. How is it that a brand new parent, with no previous experience, never held a child before, cared for one and has been surrounded by a team of professional guiding his hand be a "special parent"? She did not knew me, it was the first time we've ever talked. No one there knew who we were prior to our arrival, yet I'm special. I told her, in no specific terms, "What makes me special? I just had a child that is bound to a life of issues. Would a 'special' parent make that to a child? And the only reason I'm 'special' is because of my genetic inability to have a regular child?". Apparently no one has ever replied like that, and I do think that makes me special.
This phrase irate me, not only then but it will forever. All I want to be is a regular Joe. I'm fine being happy and minding my own business with my family. Before Sebs was born I prayed only for a healthy child. I had no delusions of grandeur or wanted an ultra handsome child, with an IQ of 150, a perfect student and athlete. All I wanted was health and no issues. I guess life has a perverted way of giving you what you want as Sebs is quite a healthy kid, he hardly ever gets sick, but that was not exactly what I wanted neither what he deserved.
A child with special needs is nothing more than a regular kid that needs extra attention and help. The parent of these children are your average parent that needs to do more to care for them. We have the same issues that every other parent has, but they are made more difficult. Our hearts are a bit broken and we are sadder, well only the ones that care do. There are plenty of them that cannot handle the situation and decide to walk away. Believe me, all think about walking away so they can never be found again. Are those that walk away "special" and caring parents as the saying suggest? I think not. If you were a jerk before, you will continue to be a jerk and possibly get worse. If you were not parent material before, you will not magically become parenting material then.
I hate the situation that I've been forced to be in. I hate that I'm powerless to correct what needs correcting and cannot snap my fingers and make it all better. I would gladly give half my being to help him. This is not what I hoped for when I decided with my wife to have a child, but this is where I am.
I am not special, I'm just a parent and as much as I hate the issues I love my role. Real parents have the balls to do what they need to do. Real parents face a situation and make the best of it. We strive to make the life of our children a happy one. I can say my boy is a happy kid. If you were going to be a crappy parent, you would be whether you had a child with special needs or not.
I can finish this post with another corny phrase to emphasize my point. Something like "When life gives you lemons, make lemonade" but I like one better that I stole from a Facebook friend. In Spanish is "Si la vida te da la espalda, agarrale el culo" that in English would be "If life turns its back on you, grab its ass", and you better believe that my hands are full.
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