I’ve had a few things floating around in my head and I haven’t had the chance to put any of it down in my blog. So here is a random assortment of recent thoughts/experiences. This does get long…just a warning.
The other day I gave Little Monkey a piece of brown paper and some crayons to color while I worked on cleaning the kitchen. The paper had actually been the inside of a roll of wrapping paper that I used up while wrapping some gifts for Christmas. The first “cudder” (color/crayon for those of you who don’t speak two year old) he picked out was “yelyo” (yellow). He colored on the paper and proceeded to tell me that the crayon was broken. I looked over to see that the crayon was not broken but that he meant it was broken because it was not showing up on the brown paper. A matter of perspective…there was nothing wrong with the crayon, or the paper but Little Monkey couldn’t see it on the paper, therefore, it was broken.
Over the past few months we have been dealing with Little Monkey’s eating habits. He was having issues with holding food in his mouth and not swallowing it for prolonged periods of time. Actually he wasn’t having issues with it, he was doing quite well with hoarding food. I had plenty of issues with it! He seems to be doing much better with the hoarding of food but still could care less about actually eating. This is a problem since we actually have to get so much phe in him each day. And most of that is done through his foods. We have been adding whole milk to his formula each day to make up for the lack of phe in his diet. He eats a little bit of food but each day it can be a struggle.
We were trying to get him to finish his dinner the other night so that he could go with us to the store. He chose not to eat, so Big Monkey and I went to the store without him. Amy stayed home with him and got him to finally swallow what was in his mouth. She talked to him about why he did not get to go to the store. He knew that we went to the store without him and that he wasn’t allowed to go because he didn’t finish his dinner. So at least he did seem to grasp the concept of what happened. It was still frustrating because we go through this all the time. We started using a timer for meals and only allowing him to eat breakfast, lunch, snack, dinner, snack each day. If he does not eat his meal within the allotted time, his food is taken away and he must wait until the next meal or snack time to eat. I know this might not be the answer but for now it does seem to be working. We are trying to get him to become hungry so that he will actually eat. And it is not like we are starving the poor kid. He does get to drink his formula all day long and pretty much as much as he wants. This is sometimes also a struggle but he is doing much better with it.
Some days I have to say that it can be very overwhelming to deal with Little Monkey and his PKU. Sometimes it feels like we’re the only ones dealing with it. (I know this is not the case, but sometimes it does feel isolating.) I remember when he was younger and we would be at dinner. I would see another mom just toss some Cheerios down for their child, or feed them off their plate. Those days were hard because it is not that simple for us. Or how recently when Amy took Little Monkey to Universal and he was offered a soft pretzel from another little boy they were with. Amy told the other boy that he couldn’t have it but thanks for offering. Little Monkey then said to her, “But Mimi, I would like some.” It was like a knife in my heart when she told me. I know it will happen more and more too. He is starting to notice that we do eat different things than he does but so far he is okay with it. I know it will just get harder.
But then I have times where I look at him and think, if this is all we have to deal with, it’s okay. It is not too much and God wouldn’t have given us more than we can handle. I also think about the fact that I am thankful there is mandatory testing for PKU, otherwise we may not have known about it soon enough to make changes that would affect him in a postive manner. I am also thankful that we were able to change his diet and it appears that he is doing just fine so far. Really, what do we have to be complaining about? We really are blessed. Amy and I were talking about it the other day (when Little Monkey had to stay home from the store) and how other people have larger challenges and obstacles than we do.
I have a friend, Holly, and her daughter has epilepsy. When I first met her at church, I thought, Wow there is no way I could handle that. Sophia had had multiple seizures at that point already in her life, with more to come. She is actually doing much better with it at this point and has been able to come off her daily medications. But for Holly, Sophia and their family, it has been a struggle. After we had been friends for awhile, we had discussed how we both thought that we could never handle the situation that the other was dealing with. But honestly, we of course never thought we’d be dealing with these situations in the first place. And once the situation has been given to you, you just have to do your best to work through it and do what needs to be done for your family.
Another family I think about a lot is Kathleen’s. Kathleen’s son Jonas was diagnosed with autism. Their struggles are different from ours and I think they are more challenging that what we have to deal with. I know that Kathleen would give anything for Jonas to call her Mommy. And I hope that one day he does, but until then, they will celebrate in the smaller achievements. I’ve even tried to use some of Jonas’ videos to help Little Monkey. There is a video of Jonas feeding himself oatmeal. Little Monkey thinks it is great to watch but it does not entice him to eat more oatmeal or anything else for that matter.
So all of that to say that perspective can change how you feel about anything. And while some days seem bad, they could be worse, but that doesn’t make our struggles or anyone else’s struggles any less.