Skills

A question I am asked often by Logan's doctors is... Is he losing skills? This question often haunts me while I am at home watching my child lay around. I say lay around because if no one was there to help him, he would hang out on the floor in the same little area looking to the right as he always does drooling like crazy. I hate being so blunt, but lately, this is the extent of what he does independently. During this time his hands and feet are doing a turning or writhing motion. It is almost like they are moving in sync with one another. Then his arms or legs and sometimes his trunk will join the rhythm.    

That is about how much action we see out of him. A little over a month ago Logan was rolling from his stomach to his back. Where did that skill go? Before the hospital he was holding his head up with us holding around his chest and he seemed to be hitting toys with purpose. Where did that go? I can play this game up until the day he was born.

It seems so cruel. We have had to mourn the loss of the normal developmental milestones. Now we mourn the loss of Logan's own milestones. I have to say, it is like a punch in the gut every time he loses a skill.

We still have yet to find a diagnosis to explain Logan's problems. We have no idea if the loss of skills and progressive worsening of his condition are related to de-conditioning from repeated illnesses or from a degenerative disease.

Despite the lack of answers, we move ahead. We continue therapies and do as much as we can to keep Logan active and stimulated. I have to say it is getting tough to keep the motivation going. It is hard to see his progress and often the lack of progress overshadows any improvements in his development. It is like the dark cloud of winter has taken hold of our home and does not want to let go.

Tomorrow Logan sees the eye doctor and once again I will be asked questions related to Logan's development. Inside I will want to scream at the torture I am put through having to explain where we are at. But instead I will again explain the most recent speed bump in Logan's life. I know the doctors are doing their best. Logan is not an easy case. This post is not meant to blame the doctors for the lack of a diagnosis.

Logan is one of way too many children as well as adults in this world without an official diagnosis to explain their medical and or behavioral differences. Society has become so medically advanced which can be a blessing and a curse. At one time, Logan would have been diagnosed as mentally retarded and that would have been the end of the quest. Nowadays, we have extensive genetic testing that can pinpoint which chromosome or gene is abnormal and then name it. Then, if a person is lucky, there may be a way to cure it.

Ok, so I have gone off on a few tangents here and could probably write for days but I will spare the readers from my ranting!

Logan is losing skills. It makes me mad. It makes my heart break. I pray that he does not understand any of this. We will continue to work at his therapy and provide him with activities that bring him joy. In the meantime I will continue to ask questions and seek out some sort of understanding behind all of this. I may never have an answer, but I don't want to regret not trying. Logan is worth every tear, every growl of frustration, every unanswered question. Because at the end of the day, he falls asleep in my arms with his porcelain skin, warm rosy cheeks, and head resting on my arm without a care in the world. In those moments it is as if nothing else matters.