Things around here

I have been pretty quiet here lately. Honestly the reason is I am exhausted and don’t really have time for much.

We have been having some really rough behaviors with Nathan over the last couple months. We live with it every day, so we have become almost numb to it. However, when anyone else comes to the house, they sort of look at us like we are crazy. They ask how we are surviving and functioning and the answer is we do not know any different. I guess when you are so in the thick of things, you can’t quite see your way out.

He comes home from school and the second he is off the bus, he is agitated. Sometimes I give him more Valium to see if that helps and that is super tricky. It can be too much, too little or he can be so escalated that is doesn’t help at all. He screams all night long. So from 3 until around 8 it is non stop yelling, arguing and he has started with nasty name calling. We hate it, but we cannot stop it.

So about a month ago, we changed one of his medications. As the weeks progressed. We realized (or the social worker with Hospice realized) that it was bad. After speaking with his Psychiatrist we decided to reduce it back to where it was. Now we wait 3-4 weeks to see if he mellows out and if not we will have to change a medication out all together. That terrifies me since he has been on the same medications for about 7 years and he does not do well with change.

We are frazzled, tired- mentally and physically. In a way that is indescribable. Truly words cannot describe the level of exhaustion we feel on a daily basis. It literally is cracking us open from the inside out. We all walk on eggshells so as to not upset Nathan, which we are never successful at.

The other issue that we are facing is that Nathan’s speech is becoming harder to understand. This leads to frustration when you can’t understand what he is saying the first time and it just snowballs from there. We try really hard to listen and watch his mouth to see what he is saying, but it is so hard. It is breaking my heart. I have said it before, but we are losing him inch by inch and it is killing us. I feel like I am loosing my little boy.

We are just in survival mode over here. Daily we see that more kids have passed away. Year to date, 34 children that I know of have passed away-there could be more. This is NOT ok. We need to find a cure to save these children. None of us want to bury our children and it is happening all too often.

This is Madison’s Senior year, it should be carefree and light. She has had a heavy childhood. She isn’t your typical 17 year old. She is mature beyond her years, but she is mentally exhausted as well. It is hard for her to be here. She has schoolwork that needs to be done and you can’t concentrate, so that has been challenging. However, she just got her first job at Starbucks and is loving it. We are so proud of her. She found a job, applied, interviewed, followed up and nailed it. It gives her a chance to get out of the house and be around peers and earn some much needed fun money.

If you are a praying person we could use all the help we can get. It just feels like things are changing around here and I don’t particularly like it. Specifically pray for peace for Nathan. As hard as it is on us, I cannot begin to imagine what this is like for him.


1 thought on “Things around here

  1. Praying for you all!!! It is awkward to write as I have never met you (just met your husband and Nathan briefly on a cruise) but I hope that a friend thinking about you no matter how detached or far away might bring you some solice. I hope things improve with Nathan with the medication he is on and that somehow they would find something that would help him. It would be hard to imagine what he is going through. You sound so overwhelmed and my heart hurts for you. Its great to hear about Madison getting a job! She sounds like a wonderful young lady. Our daughter is also a senior this year, she plays tennis and is an artist and she has no free time. Is Madison looking at colleges? I know how much work it is for us during this time of college hunting. I will be praying for you and your family!! I will pray specifically that a cure will be found for this horrible disease and that there will be a breakthrough for Nathan and with his treatment. Take care!! Carol Allen, Deland, FL

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