Our kids

Many people have ask me how our kids are doing since the loss of our son. When we first told them the older boys took it pretty hard. They were really anticipating the birth of their newest brother and they understood what a loss this was for the whole family. The younger kids really didn’t understand as much. Pregnancy is a abstract concept especially for small kids. They asked me alot of questions about death and life.We had good conversations about it. They all were at the memorial service and did fine. Right now they are doing well. Daily life really hasn’t changed much for them. I think the hardest times will come in the future, holidays, when Andrew’s due date comes around and his birthday next year. Those are going to be difficult moments for all of us.

It has been a difficult year for us, even before loosing Andrew. Joshua and Kaki have been having a lot of challenges this year. Joshua has had a dramatic decline in his behavior. This summer was particularly challenging for him. Thankfully, he is the most stable he has been this whole year at this point. We are thankful for that. He is doing well in school. He started public school again this year after we had to bring him home in the middle of last school year because he refused to go to school. He is repeating Kindergarten this year and making some slow progress academically. He is still very behind his peers, and we aren’t entirely sure what the future holds for him in that respect, but the next couple of years will give us a better idea of what his long term ability is.

Kaki is having a hard time right now. This year has been challenging for her as well. After a stable year last year, she has been very up and down this year. This summer we saw a decline in her physical ability, specifically in regards to walking. She was falling frequently and having balance issues. So, we talked with her doctor and determined she was experiencing Dystonia due to some medication she is taking. Unfortunately, the medication is necessary so we began another medication to counteract the Dystonia. That new medication has caused her to become aggressive and violent. So, we have had to make a difficult choice of discontinuing that new medication. We need her to be stable emotionally more than we need for her to walk. I don’t know if she will completely loose the ability to walk or what the future will hold. Dystonia is a debilitating disorder. We have agonized over what to do, but ultimately if we don’t get her emotionally stable we cannot live with her. She gets physically violent and puts us all, including herself,  in harms way. It’s such a frustrating situation. No parent should have to choose between their child’s physical ability and their emotional stability. Life is full of tough stuff especially with special needs kids. So please pray for her, that we would be able to get her back to emotional stability and that her physical ability would not get worse.

Luke will turn two in a month. I can’t believe it. God sent him to us at the most inconvenient time, we thought, but he has been just what we needed. As we walked this difficult road with Kaki and now with loosing Andrew, Luke has been such a joy and comfort. I don’t think I would have survived this if I didn’t have this sweet little child to love on. He is very affectionate and sweet and that has been just what we have needed. God always knows just what we need, even before we do. Sam, Jordan and Elijah are also doing really well. They are growing so fast, Sam is in 7th grade this year, Jordan in 4th and Elijah beginning Kindergarten. I tell people that raising special needs kids is hard and rewarding, but raising typical children while raising special needs kids just gives you a different perspective. I don’t take the typical kids for granted. I enjoy each moment with them because I realize how special they are for being typical. They learn stuff just on their own, what takes me months of therapy and work with one of our special kids, they just learn. It amazes me. And I am thankful.

 

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One thought on “Our kids

  1. I am sorry you have had such a tough year in so many ways. I love how you nevertheless find joy in so many places too. You inspire me!

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