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Sunday, August 14, 2016

Different Paths

Sometimes having twins can rip your heart right out of your chest and break it in two. Torn in two separate directions, hoping each boy will find his own way, no matter how he gets there.

Jonah will not be riding the bus to his first day of high school this week with his brother and his friends. Since the middle of June, Jonah has been dealing with some medical issues that are making it difficult for him to function with normal daily life. It is nothing contagious, and not life-threatening, but something that is really putting the brakes on his life. We don't want to make him feel uncomfortable by telling the whole world what specifically is going on, but this is a big deal. He has suffered all summer, not being able to fully participate in fun things, family things, highschool freshman things. It's been excruciating to watch. We don't know exactly what is happening in Jonah's body, and so far we've been to three doctors to help us figure it out. This past week, the day Jonah and Ben turned 14, actually, we saw a specialist. He had some concrete ideas of what could be happening in Jonah's body, and some medicine to try, and some tests to run. We are hopeful this doctor will be able to turn things around for Jonah.

Jonah's problems started half way through summer school in June. I ended up driving him and Ben to and from school each day, to ease Jonah's anxiety and make it easier for him to function. It became clear that this was a big problem, so we went to the doctor. Originally, the doctor said Jonah's issues would pass on their own. Wait it out. We did. It didn't pass. We tried some medication, some over the counter meds, some other things...nothing helped. 

Last week, the boys had Freshman Orientation for one morning. I drove the boys to and from school, again, to help Jonah as much as I could. When I picked the boys up after orientation, Jonah got in the car and exploded. He was so frustrated with the situation, with his medical problems. He didn't know how in the world he was going to be able to go to school the following week. He was a mess. Friends had noticed some of Jonah's unusual behavior and had asked Ben about it. Ben wasn't equipped to field questions about his twin, so he told them the truth about Jonah's medical situation. Jonah was embarrassed and angry with Ben. I realized I needed to educate Ben on how to talk about what is going on with Jonah, and to help him preserve Jonah's privacy and integrity. He has now been educated, Mama Style.

Over the past few weeks, I have been constantly trying to figure out what is going on with Jonah and how to help him. Anxiety can be a powerful thing, is it just anxiety about starting high school? But the problems started in the middle of summer school, when he was comfortable and acclimated to the newness of his new school. So I wasn't sold on the theory that this is all anxiety-based. It could be partly due to his diagnosis of Tourette's Syndrome. But the meds the doctor prescribed, having assumed this is what the problem is, did nothing to help Jonah. I worried all summer about what we would do when school started. Would Jonah snap out of this problem? Would it disappear as quickly as it appeared out of nowhere in June? Would I have to home school? The kids and I agree that although home schooling would help alleviate their anxiety, no one would make it out alive. We are not made to teach and learn a curriculum together, as mother and children. I can teach them a host of other Life Things, but not School Things. I just am not made for that. I can't even get them to do homework. How would I teach them a whole grade?? Not gonna happen. 

My worries grew.

After orientation, I realized we needed help. I called our educational advocate, explained the situation, and asked her what our options were. She said the best option was homebound tutoring. She explained that we would need a letter from the doctor, stating Jonah can not attend school due to his current medical condition. A teacher would come to our home every school day for an hour and teach Jonah some of what his peers are learning. After talking with Alex and Jonah AND the doctor, we decided this was the best plan of action. 

I was shaking during the whole process of figuring this out. I was devastated, thinking of one of my boys taking the bus on the first day of his freshman year of high school, and the other one waiting at home for a tutor. When you have twins, especially of the same gender, you sort of expect their life paths to be pretty congruent. You expect them to be in the same grade, go to the same school, graduate at the same time. I expected that in about four years, their life paths may wind away from each other a little bit more, but that's fine. That's when they should have their own lives, independence. Independence from their parents, and more separation from each other if that's what they want. But right now, they're both supposed to go out on our front porch in three days and have me take a million pictures of them because it's their first day and let me hug them and try not to be embarrassed as I run after the bus in my pj's, waving and screaming "I LOVE YOU!!!" at the top of my lungs. That's what I expected to happen. Not trying to get a doctor, who is of course on vacation, to fill out a form for the school so that one of my boys can have school at home because he is in such bad shape that he can't even go to school right now. That's major. 

He can't even go to school right now.

That shook me to my core. You can't ever take anything for granted. You can't expect that just because you have two beautiful babies at once, that they are always going to be on the same healthy, happy path until they leave for college. Sometimes crazy stuff happens. 

I went to the parent orientation at the high school last week, and it was tough. It was so difficult to sit in an auditorium full of parents whose kids were not going through what one of mine is. It was difficult to sit there and be happy for Ben and devastated for Jonah, not knowing what the next weeks will hold for him. It was hard to see friends and know that so many other families are feeling only the butterflies of a new beginning, not an ache in their hearts for what isn't beginning the way they thought it would.

I will say, our new high school has been amazing through all of this. I am so excited for the boys to get to go to this high school. The school has been supportive and informative and helpful through this whole process. We're hoping that after some more evaluation and testing, we can figure out what is wrong with Jonah and get him back into the life he is supposed to be living as a 14-year-old. 

The other issue we now have is explaining to the other three kiddos why Jonah gets to stay home from school while they all have to go. Ben completely understands. He is supportive of Jonah, and while he's sad that his summer is almost over, he is ready for the challenge and excitement of high school. Aidan and Ella don't understand what will be happening yet, but they will be furious because they will think Jonah is staying home to play video games while they have to go to school. I have informed Jonah that he will have access to electronics for exactly one hour during his school day, just like Ben does at school. The other hours, he will work on his homework, exercise with me since he won't be doing gym class, do art projects, whatever else we can think of to keep his mind and body active. And he'll have his hour of tutoring. 

I just didn't see this coming. I have to give it to my kids-- they keep coming up with new and crazy things that I have to research and learn about and advocate for and love them through. Alex affectionately calls me his "Research Whore." Fourteen years ago, I never could have dreamed up all the things the kids have encountered in their short lives that I have had to get a crash course in, as fast as possible, in order to help them thrive. I don't know if there are any kiddos out there that are just living life normally, without a big to-do, just being kids, but mine certainly aren't. They have come up with the craziest, scariest accidents, the most complex diagnoses, the most mysterious of ailments...I always say they keep my busy. No doubt.

As my heart breaks for Jonah who can't officially join in the milestone that is three days away for Ben, I'm trying to let myself be excited and nervous for the other three who do start going to school over the next week. It's hard to feel separate things for each kiddo when the things I'm feeling are so big. I'm so happy and excited and nervous for this new beginning for three of my kids, but I'm so sad for Jonah. And worried about him. And anxious about what is causing his medical problems.

I never thought this would happen-- where one of my kids can't function at school. Friends and family have supported me, reminding me that if this is what is best for Jonah right now, then we're absolutely doing the right thing. And that he will thrive back in his "normal" life, once we figure out how to help him medically. This is absolutely true, and I know completely and absolutely that the decision to have Jonah tutored at home right now is the right one. The only one. I've lived the last two months along side him, and I know he can't function in normal life at the moment. But you never want your babies to suffer in any way- emotional, mental, or physical. So I'm trying to grasp at anything that I think will help our boy heal and get back to what we thought his life would look like as this new school year ramps up. 

Keep us in your hearts. Maybe then mine will be less heavy.

1 comment:

Full Spectrum Mama said...

I'm amazed that you were even able to write this generous and wise post.
WE went through some debilitating stomach issues a few years back and off and on still have a hard time, but at the time it was devastating both practically and psychologically...
Wishing you much healing and insight and patience and courage.
Full Spectrum Mama
p.s. "educated, Mama Style" -- love it!!