I feel like I am on a roller coaster lately. We have been receiving so many responses since the news story aired about our family that it is hard to catch our breath. It is overwhelming but in the most wonderful of ways. I am feeling very humbled by people’s responses to our situation but also so grateful as I know that our story could be so much worse. I have seen it first hand. I spent the entire summer at the hospital with Nathan and saw sick children everywhere and every time I saw one I thanked God that it was not my child that was laying in a hospital bed. I know that it can always be worse.
However, lately, things have changed with Nathan. He is so tired all the time and I am wondering if it is the effects of his medication or the cold he is recovering from. I will speak to his Dr. about this and see if there needs to be a change made. Also lately we have had some of the anger issues come back. He seems to be very agitate in the afternoons and it is directed towards me. I think he tries so hard to hold it all together at school, that once he gets home he just let’s go. I try to get a snack in him as soon as we walk in the door and let him have some “down” time, but he never has “down” time. He does not know how to sit still. He is always going 100 miles an hour until his head hits the pillow at night. We have been trying to put him to bed a little earlier in the hopes that it will help him be more alert at school and keep him calmer when he comes home. So far, it has not been working out too well. I get reports from his school that he is falling asleep and I just can’t seem to figure out why he is so tired. So, Mommy is on the hunt for information. Perhaps he needs a supplement or something to help perk him up.
It has been so cold here the last few days that they have had indoor recess and he has been able to go into his general classroom and play with his peers. That seems to be the highlight of his day and he is eager to tell me about the kids he is playing with. It is so nice to hear that he is playing with some new kids and I hope that he is developing some new friendships. I want so badly for others to understand him and want to be around him.
As for me, I am tired. I want a normal existence, but I realize that this is my normal and honestly I am ok with it. I truly wouldn’t trade my life for anything, but I am not going to lie, it is hard. Ask any parent of a special needs child and they will probably say they are tired. We don’t have baby sitters because honestly, I don’t trust anyone to understand my son. I have left my kids with my parents, my brother and sister-in-law and my neighbor. That’s it. I know there is respite care out there that is fantastic and maybe someday I will be more comfortable going that route, but for now, we keep it in that small circle. He is comfortable with all those people and they understand him and love him more than anything. It eases my mind when they are not with me to know that they are with someone who loves them. For Christmas, my parents gave us a gift card for dinner and a night out (over-night) and I cannot wait to take them up on the offer as Jay and I need a date night. It has been way too long and I miss having just us time.
Again, to all of you out there who have taken time to send us a postcard or a letter or some other special object, it means the world to us and we are grateful for all your thoughts and prayers.