Making Gains

Lately, Parker has been making such great gains in most areas, speech, PT, OT, scholastically and so on. It is fantastic, but, I find myself waiting for the proverbial other shoe to drop. It is not that I am a pessimist; it is just that this has become a lifelong pattern with Parker. As soon as he is sleeping well and making giant gains in several areas, we always have seizure issues arise. I actually document this and can go back and see the trend. I love when he is sleeping well as most of his life sleep has been a real problem. I also love when he makes developmental gains as they give me hope for his potential and a great feeling of success. It solidifies what I have said all his life, the more therapy he gets, the better he will become down the road. I think that his great successes prove this point. Even though I am greatly aware that seizures are most probably on there way and then of course med changes to follow, I do relish this time of great achievement. It has never lasted long without leading to seizures, med changes and regression, but, I hope and pray for the day that I believe will come when he just keeps moving forward and we leave the bumps in the road behind us.

The last few weeks have been great in terms of sleeping which I must say has been one of my biggest issues to deal with. I don’t do well on little sleep. I wish I could just get a few hours and be good to go, but, it is not in my basic make up. I have always been a person that doesn’t function well on a limited number of hours and it is worse when someone wakes you up all the time. Lately, I have been waking up several mornings before my little guy wakes up. It is kind of heaven when he sleeps this well. Most of his life has been anything but heavenly in the sleep department. For a number of years while I was working, Parker would sleep until about 1 or 2 in the morning and then be awake for 2-4 hours before going back to sleep for a few hours. He would get back to sleep around 3-5 AM and I had to get up for work at 6 AM. It was not a good situation. I was exhausted all the time. Now, much of the time, I am able to sleep until he gets up and thankfully he doesn’t have these all night “parties” anymore. The right seizure meds and the VNS seem to have taken care of the midnight wake ups. Usually Parker will have a few bad nights where he awakes rather early and then he will sleep well for awhile and then it is seizure time again. The doctor adjusts the medication and we get back to a normal again.

As far as developmental gains, he has always made steady gains and then had regression and then more gains. The regression is frustrating to say the least, but, he always keeps going in the right direction. It just takes a much longer time to get to the benchmarks. I can live with the 2 steps forward and 1 step back as long as progress is being made and goals are being met. I have always been a rather impatient person. When I want to get to a place, I want to do it fast and meet my goal. With Parker, I have had to learn patience and allow for imperfection. Yes, another one of my flaws, perfectionism. It has been a good opportunity for me to put into practice my Christian beliefs, God is in control. It has by no means been easy, but, I am constantly reminding myself that Parker is in God’s hands and that God’s timing is perfect. My timing needs to take a backseat as well as my idea of having everything laid out perfectly. None of us are perfect and I have been able to learn this through my son. I don’t claim that I have “perfected” these skills, just working on them and making good progress. Sometimes I think that is at least some of what I am supposed to learn through raising a wonderful special boy like Parker. God is trying to teach me to have patience and not expect so much out of this life and us mere humans.


About Lori Linn

Besides writing, Lori has been an Actress both on stage and in film, is currently a member of SAG and AFTRA, and is a credentialed teacher as well as her full time job as a mom.
This entry was posted in Children's book, novel, non-fiction, seizures, epilepsy, VNS, special needs, disability, genetic disorder, author, special needs author and tagged , , , , , , , , , , . Bookmark the permalink.

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