In addition to taking monthly pictures, we decided to tackle Liam's crazy hair. I've been suggesting we cut his hair for several weeks now but it's been so cold so we've been putting it off. Well- today was the day and here is a before and after!
But before we did all of this, we had a genetics appointment at Walter Reed. I am writing this on the 30th... almost two weeks after the actual day so I forgot that the appointment was the same day as Malia's pictures and Liam's hair cut. We found out "today" that Liam definitely has Neurofibromatosis Type 1. One younger doctor began the appointment by doing a quick exam and seeing if we had any questions. I told her we were expecting the results from Liam's NF test and she said the results were in and they were positive. She did a great job of giving us the information right away, not making us wait, but also giving them to us with compassion. I knew they were going to be positive. The geneticist in Jacksonville told us she had never seen a child Liam's age with the number of cafe au lait spots he had that did not have the disease. That along with his small size, large head circumference and delayed development- I knew in my heart he had NF. I had prepared myself to hear that they were positive. When she left the room to get the genetics expert, Zachary asked me if I was okay. There was this tiny hope that I had let enter my brain that they'd say he didn't have it. That all these other things were coincidences and that there was nothing to worry about. So I had to deal with that not being reality but I was okay. I was okay and I am okay because I know we can handle this.
I firmly believe that there is a reason Liam has NF. Yes, something strange happened in Liam's DNA that made this mutation occur. But there's a reason that happened. Well, many reasons.
There are hundreds of people who have prayed for Liam. Praying for Liam brought them closer to God for the few seconds or minutes they spent praying for him.
Several of Liam's therapists have told me that he was the highlight of their day- that they looked forward to his appointments because, while he can be very stubborn, he's always cute and 95% of the time he's such a sweetheart. So because of Liam's NF, he has brought joy to Jen's and Amanda's and Elle's and Janine's days. And with his progress, they've seen a direct result of what their hard work can do.
Other parents who have heard about what Liam goes through and what we, as his parents go through, have expressed to me that they can't imagine dealing with what we're dealing with. While I think part of them saying that is to be supportive and empathetic, I can tell that another part of it is them saying they are thankful this is not something they have to deal with so there are many parents who, even if for a moment, have been thankful that their children are healthy and gratitude is a wonderful thing.
Zachary doesn't talk a lot about his feelings and thoughts on Liam having NF. He mainly makes sure I'm okay. He's also taken Liam to MRIs and EEGs. I can take Liam to these appointments and I will when Zachary is not able to but Zachary can handle the IVs and blood draws a lot better than I can so I let him do that.
Throughout elementary school and into middle and high school I was heavily involved in tutoring. This continued in college in a different way as I earned my education degree. I am ashamed to say this but I'm going to anyway. I was always so impatient with students who had a hard time learning. I remember thinking to myself, I would lose my mind if I had a kid like this one day. As I got older and realized there are many reasons and causes for kids to have a hard time grasping concepts whether it be a difficult home life, lack of interest, psychological issues, learning disabilities, etc., I discovered that the child rarely had anything to do with it. And then I felt guilty. And then I grew fearful that because of this attitude I had had with these students, God would give me a child who had trouble learning. A lot of people like to say that God won't ever give you anything you can't handle. They think this is in the Bible somewhere because they've heard it said so many times but it's not. There are some verses on how to handle difficulties- Psalm 55:22 says "Cast your burden on the Lord and he will sustain you." In part of our favorite passage in the Bible, James says "...whenever you face trials of any kind, consider it nothing but joy because you know that the testing of your faith produces endurance and let endurance have its full effect, so that you may be mature and complete, lacking in nothing." And instead of hoping God won't give me trials that I feel I can't handle, I focus on internalizing these two truths. Having a child with learning troubles is something I can handle. I thought it wasn't but God taught me a lesson.
There has been a big push for more politically correct language- there's a difference between a "special needs kid" and a "kid with special needs." While studying education, I didn't get it at first- I used the appropriate term but I wasn't sure why there was such a distinction. Now I get it. Liam, before all else, is Liam. Not NF, not special needs, not Malia's brother, my son, etc. He is Liam. When you say "special needs kid," his special needs define him. Since I once did not understand the distinction, I will not be bothered by people who don't know the perfect way to word things- it's hard! I was thinking today how difficult it must be to be the President. There's nothing you can say that will make everyone happy- no matter what he says, someone will be terribly offended. So acceptance and tolerance is on the rise I would say as a whole. But there are still bullies. There are still kids who just say mean things for fun. Liam will probably have someone make fun of him if he doesn't learn something as quickly as others and if he has visible spots on his skin. As a mother, it makes me tear up writing this. And it makes me resolve to teach both of my children that their worth is not determined by what mean people say or what any people say for that matter.
Malia will grow up watching a big brother go through some difficulties that not all of their peers will go through. He will be stronger for them and she will learn lessons of resiliency and perseverance simply by watching him. I bet she will learn to stand up for others who are unfairly teased. I bet she will be sensitive to seeing others' pain and I bet she will grow to be a compassionate and loving young lady.
So, you see, Liam isn't in this on his own. He has the fierce love of his parents, sister, grandparents, uncles and other extended family. There's not a two year old around who is loved more than this little boy. He's not loved because he has NF. He's loved because he's Liam. Because God knew what he was doing when he formed Liam. He's loving, sweet, stubborn, funny, silly, mischievous, helpful, eager, and adorable all in proportions that make him uniquely him. Oh, and he has NF. But there are several reasons he has NF- some of which are clear now and some which will be revealed in time.
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