Denial, disbelief and then acceptance

When the doctor gave the diagnosis about Max (9 months old) having moderate to sever global developmental delays, I honestly didn’t believe him. I was thinking, he just doesn’t know my son. He’s got to be wrong.

You see, he didn’t start out having issues. He was holding his head up on his own very steadily by the time he was 2 months old. And although he was skinny, he started out very small and his big brother was also on the small side (he’s not now). He was a little late in smiling, but he was still within the normal range just at the late end.

But as the days passed, I started to see what it was the doctor had been talking about. There are two huge issues that we, my husband and I, just didn’t see how much of a problem they were until the specialist pointed them out to us.

First, from the time Max was born, it always seemed like he just wanted to walk. It was cute, sometimes annoying (especially when you’re trying to get him to sit), but I just kind of thought it was one of his own little quirks. Little did I know, this desire to stand/walk all the time is not that. He’s arching his back! I always thought that when kids arched their back because it was a problem, meant that their backs were really arched (like trying to do a back bend or like when my older son would have a meltdown and not want to go in his car seat). Max didn’t really lean back, he just stood straight. BUT that stiffness is a tell-tale sign that something is wrong. It is very indicative of Cerebral Palsy (brain damage that affects motor skills). So here I thought my little baby was just trying to keep up with his big brother. Instead he has brain damage.  WHOA! What?

Will Max ever be able to walk? We have no way of knowing at this point. The only thing we can do is put him in therapy and see how it goes.

Second big issue: The feeding thing – or should I say lack of eating and babbling. Max always seemed interested in food, but whenever you would try to feed him he was like a little ninja and would dodge the spoon. And if you managed to get a spoonful in his mouth, it was immediately out. Turns out this is a common thing for babies with Cerebral Palsy (CP). You see, children with moderate to sever CP have issues with the muscles in their mouths. The eating this is a problem but there are solutions. The real problem is his babbling. You’re probably thinking isn’t it a good thing that Max is babbling? Yes, except that he isn’t babbling correctly. He makes lots of noises with different sounds, which we thought was babbling. But its not real babbling… its just noise. Real babbling involves making sounds with syllables used in real words, like “bababa”, “dadada”, “mamama”, “nanana”, etc. These little phrases are the precursor to language. Without them language is not possible.

Will Max ever talk? The prognosis is not good at this point. We are hoping that with therapy that will change.

 

So how did I handle all of this as I realized that what the doctor told us is real? Lots and lots of crying. And more crying. And more crying. Crying while I was driving, crying while I took a shower, crying while I went to the bathroom. I tried my best not to cry around my toddler but sometimes I just couldn’t help it. Milan would ask me why I was crying, and it would make me cry even more.

No one gets pregnant hoping and dreaming about having a child with special needs. But then that is the reality that some of us end up with. Words cannot really describe how you feel when the realization of what is happening starts to hit you. Anger, guilt, overwhelming sadness.

You would think that the kind words of others would help, but for me, I felt like such a fraud every time someone told me that Max was lucky to have a mom like me. I kept thinking, I sure have them fooled. You see, when I started understanding the reality of what life was going to be like, I started to question whether or not having Max was even the right decision. As a mom, it was heart wrenching to realize that I even questioned it. I love my son incredibly much and couldn’t even believe that I was having these thoughts. But I did, so I felt even more guilty. And those kind words from others actually hurt.

Thank goodness for the internet, because I was able to research and research so I didn’t feel so helpless. I was lucky to come across a video on YouTube about a woman with severe CP. The mother talked about how she cried for a couple of days then she realized that her daughter was the same smiley daughter she was before she got the diagnosis. In that moment, I started to feel a shift in my thinking.

Once again I started to look at my son for the wonderful gift that he is – special needs and all.

Posted in Personal, Special Needs

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