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Sunday, July 21, 2013

Again With the Heart??

On Thursday night, Alex and Ben had karate. They came back from class, all pumped up and happy. After a while of unwinding, I put Ben to bed as usual. I went to take a shower. A few minutes later, Ben came in the bathroom and said he needed me as soon as I was done with my shower. This was weird, because it was really late, Ben was really tired, and usually he just goes right to sleep after we put him to bed. 
By the time I got out of the bathroom, Alex was upstairs too, and he and Ben were on our bed. Ben was more upset than I have ever seen him. He said his heart was racing, he felt like he was going to pass out or die. He cried that he is super worried about his heart defect but has been too afraid to tell us how worried he is. He thought his heart was going to go crazy and something was really wrong, he said. I did my Mama/Triage Nurse Assessment and didn't see any of the signs of cardiac distress our cardiologist has warned us to look for. Having had panic attacks myself, I thought this might be what Ben was experiencing. After my 'thorough' assessment, I decided his symptoms didn't warrant going to an ER or calling 911 at that point. 

Alex and I did our best to calm Ben down. We did relaxation techniques. We did deep breathing. We tried everything to just help him calm down. Every minute or so, Ben would ask me to feel his heart through his chest and tell him whether I thought his heart beat was slowing down or speeding up. He kept asking if I was scared about what was happening to him. He asked if I thought he was dying. I really thought this was a panic attack, so I was very confident in staying calm and helping Ben calm down. I'd say "No, Ben, you are NOT dying. You will not die until you are 103 and you die of old age." Then Ben would start freaking out "Don't talk about anything Mom! Don't talk about dying!" Okay, but I'm just answering your question...he was irrational and just completely freaked out. For about 45 minutes, this kept going on and on. When he said "All I want is to wake up tomorrow morning and not be dead," that really made me feel so sorry for him. I wish a Mommy Hug would solve all our problems these days.

Ben finally calmed down enough to lie back on the pillows. I got into bed to read, and he snuggled next to me. Every few minutes he would ask me if I could look at his face and make sure he wasn't turning blue (a sign our cardiologist said to look for that would mean cardiac distress). Finally, finally, Ben fell asleep. 

A little while later, Ella came to fetch me for our mid-night party. When I went to her room, I saw Alex laying in Aidan's bed with him. We waved at each other through the night-light-filled darkness. 

Alex left the room, and a while later I tried to go back to our bed too. When I got there, Ben was sprawled on Alex's side, Alex was sprawled on my side, and was snoring as loud as can be. I decided not to rearrange their bodies to try to find a peaceful sliver somewhere in my bed, and instead I went to Ben's bed. A little while later, Ella woke me up, insisting I come find breakfast for her. Boo hoo hoo, I said. All I want to do is sleep after the intense night with Ben! No rest for the weary.

Friday morning, I couldn't shake the heavy feeling in my heart. I kept wondering if there was something about Ben's meds that had made his heart race like that. Or was it actually a cardiac problem of some kind? Or just a panic attack? Fridays are our days where our mornings are free, until mid-afternoon when Aidan has a couple hours of therapies. I had planned a fun outing where we'd all go see the new movie "Turbo." We relaxed during the morning and then all got ready to go have some movie fun.

I bought our tickets, the kids all picked out their Special Movie Candy, and we found the seats that everyone agreed were perfect. Just as the commercials started, Ella had to go potty. So I took her out to do that. When I walked back into the theater, Ben was coming out to find me. His heart was being funny again and he was very, very upset. He said he felt like he was dying, he needed to go home RIGHT NOW. Part of me was like uh, man? I just paid about $803 for movie tickets for all of you, and candy for all of you, and we haven't even gotten to the PREVIEWS yet! We're not leaving! 
I had Ben sit on my lap and try to relax. Take deep breaths. Calm down. But it didn't work. He started to get more and more anxious and upset. I thought quickly about what I needed to do. Ben still didn't have any specific cardiac distress symptoms that his cardiologist has said to watch for, but obviously something was going on. I thought since Ben was in the middle of having this heart funky-ness, maybe a doctor could really see what was happening and rule out any cardiac problems. So I made the disappointing, executive decision to leave the movie and head to the ER, four scared little children in tow. One thing about our kids- they are extremely close when it comes to one of them being in trouble. The rest of them are very concerned when one of them is sick or hurting. Which is very sweet and endearing, but also very stressful for Mama. Because not only do I have to concentrate my full attention and care on figuring out what to do with the sick kid, but also somehow manage the other kids' high anxiety about what is happening to the sick kid. Little bit tricky. I have to remember never to freak out because that will freak the kids out even more.

As I drove to the ER, Ben sat beside me, completely freaking out. He said his heart was racing. He thought he had a fever. His left arm felt numb. He couldn't see normally. He was shaky. He thought he was going to pass out. He was sure he was dying. As I clenched his hand all the way to the hospital,  my hand was sweating more than even his. But when he asked me over and over if I thought he was dying or if I was scared, I answered calmly NO. You are not dying and I am not scared. I am worried about you and what's happening, but I am not scared. Because if Mama's scared, that's really super bad.

As we pulled into the ER, I organized the kids into who would do what, just like we do every time we have an emergency. I told Ella and Aidan that when we got out of the van, they were going to hold Jonah's hands. I told Jonah that he was not to let go of their hands until we were in a hospital room. I told him he was in charge of them because I had to carry Ben in because he said he couldn't walk and was still completely freaking out. Everyone did exactly as they were told. They were perfect. I carried my big boy hurriedly into the ER, told the front desk lady that my son has aortic stenosis and a bicuspid valve and was having palpitations. She got us into a room immediately. Before we even found enough chairs to get the other kids situated, they had Ben hooked up to an EKG and other monitors.

Long story short, the x-rays, blood tests, lab results, EKG results, and physical exam all came back ok. Other than an elevated heart rate, Ben was ok. So the doctor couldn't really say what was going on with Ben, but that signs pointed to panic attacks. I racked my brain, trying to find the tie between the first attack and the second. Was it a side effect of any meds? Stress? Fear? I don't know. I still don't know. It happened out of the blue and stopped out of the blue. Ben's cardiologist did put him on an "Event Monitor" which is a portable heart monitor, for the next 30 days. If Ben's heart rate exceeds 140, the monitor picks it up and the staff calls us to see whether Ben is doing normal 10-year-old things, or if he's in distress. 

Ben is not happy about this monitor. I think it's a combination of worry about his heart, worry about being different, worry about the cords getting tangled, worry about having another panic attack, worry about life in general. He can take the monitor off to shower, swim, or get wet with the hose. Other than that, he has to wear it all the time. Luckily, it will be off by the time school starts. And hopefully, it will show that Ben's heart is fine. 

I talked to the psychiatrist about Ben and let him know what was happening. He said at this point we won't change any meds, we'll just keep monitoring Ben and see if he has any more panic attacks. They may be gone forever. Or maybe not. We don't know.

Ben has had to sleep next to me since the attacks started. He wants to snuggle a lot. He looks pensive and worried more than normal. But since I have had panic attacks before, I know the language of the terror that he feels and we can talk together about it all. He did not want to travel to spend the weekend with us and extended family this weekend, because he said he feels more comfortable at home. I said you cannot let panic attacks rule your life. You cannot say "I might have a panic attack, so I'm not going to live life to the fullest. I'm going to stay home, just in case." Ben understood this. We had a great weekend at Nana and Papu's house, and no one had any panic attacks. 
Our summer has taken a turn I didn't see coming. Ben doesn't want to go to summer camp twice a week like I had originally planned. He's worried about the whole heart thing, and who can blame him? I don't think it's worth the anxiety, trying to fight him about this. So I cancelled camp for the rest of the summer. It was the best camp experience the boys have ever had, so at least they know that some camps are great. We'll go back next summer. 

I guess we'll take it one day at a time and see how things go. I wish my kiddo didn't have to go through this. I wish my other kiddos didn't have to be scared about what is happening to Ben. When the doctor told us that Ben's test results were coming back fine, Aidan came up to Ben's hospital bed where he was hooked up to all kinds of wires and IV's, and said "Ben, I'm so happy and relieved I'm just going to cry." And he did. Whenever we have a Kid Emergency, I feel like I'm this close to losing it and sobbing hysterically while rocking in the fetal position in the corner, too scared to see what is happening. But then I remind myself, I'M the one who is in charge of these kids and I have to take care of them. Even if it's scary. And if I start crying, I won't stop, so during the emergency I try really hard to hold it together. When I get home and have a few private moments, I let the flood of fear and tears out, and then feel better. As I was trying to run into the ER, holding my almost 11-year-old boy, looking back to make sure my other three were in tow, I felt like I was on the cliff of losing it. As I said the words "My son has aortic stenosis and is having palpitations," it suddenly felt very real that our little boy has a heart defect. And honestly, I wasn't sure I was strong enough to face what might be coming. I don't know how to find courage to face these things with our kids, other than to just make my body go through the motions, clench my children's hands in my sweaty, scared one, and kiss them at every opportunity. And tell them how I love them more than anything, and I thank God every single day for giving me each of my children.

Tuesday, July 16, 2013

Despicable Tomatoes

We found the best restaurant ever if you have kids with ADHD. Sweet Tomatoes! It's a buffet-type restaurant. You pay a flat fee going in and then you can eat as much, as little, or as many types of food as you want. The best best part, is that if you have a kiddo (or three) who have ADHD, in this restaurant everyone is walking around getting what they want to eat, so if your kids aren't sitting down no one notices! 

We took the kids to Sweet Tomatoes for the first time this past weekend. We usually dread restaurants because everyone tries to be very good, but it's super hard for their little bodies and brains to be in control in that sensory-overloaded environment. No matter how many activities I come prepared with, it's usually a struggle to make it through the meal peacefully. Alex and I never get to talk to each other, the kids usually bicker a lot, everyone is up and down on their seats, moving and trading places as much as possible, and it's just chaos. It's tiring chaos. 

After we all had the first choices of what we were going to eat, and were sitting down at our table at Sweet Tomatoes, I thought hm, what's different? Why am I actually enjoying this restaurant experience with ALL my children? Weird! Then I realized it was because when someone needed a spoon, Ben would jump up and volunteer to go and get one from across the restaurant. When Ella needed help to get her soup, Ben and I took her together to get it. When Aidan needed help to swirl his ice cream, Jonah and Ben took him. Everyone made a trip to the bathroom. Everyone was up and down, except for Alex and me! The kids were so excited to help each other and walk around being helpful and choosing food, that they didn't even ask us to come with them! At times, our whole family was actually sitting at the table together, and we took that opportunity to have great fam chat. It was wonderful. All restaurants should be set up this way! At least there should be more that cater to people who need to get their jiggles out as they eat out. It was a lot of fun. No meltdowns, no struggles, no fights, and we actually got to have enjoyable conversation. It was great! 

Another thing our family is REALLY into right now are the "Despicable Me" movies. We saw the second one on the 4th of July with the kids, and we all loved it. We dug out our DVD of the first movie and I think the kids have watched it at least 463 times this past couple weeks. They watch it in the car, and repeat all the lines. They all do fantastic impressions of the characters. So all day, Alex and the kids walk around conversing in Gru-Speak (he's the main character, for those of you who haven't seen it) and Ella shrieks with glee like the littlest girl in the movie. (For those of you who have seen it, Ella sounds JUST like Agnes when she screams "IT'S SO FLUFFY I COULD DIE!!!" when she gets her stuffed unicorn.) Hilarious. It's so fun to have Family Things that everyone is a part of.

One other thing my husband and boys are really taking an interest in is learning Danish. My best friend from childhood, who is Danish, and her family came to visit a couple weeks ago. We had the best time ever. Ben and Jonah were very intrigued by the different language they heard their new friends speaking, and decided they should all get apps to learn Danish. So far, because we're talking about Alex, Ben and Jonah here, they have learned "I have a pain in my armpit." Not sure what sort of situation they'll use that in when we go to Denmark, but it's good to be prepared. My best friend, Ellie, has an amazing family. Her son, who is Ben and Jonah's age, taught the boys to say "butt" in Danish. They still get the biggest kick out of this. We laughed-- tween boys are tween boys, no matter what country you call home, I guess.

Once we went to the park with Ellie, her husband and their four kids. Aidan ran into a friend from school, who noticed that although Ellie's family speaks perfect English, sometimes they also were speaking a different language. He asked Aidan about it. Aidan said "Oh yeah, they're from Denmark. They speak Spanish or something." Alex laughed and told Aidan they speak Danish. Oh yeah, he said. 

My kids have made me chuckle lately. They're just so quirky and creative and awesome. I love it. 

Make sure you check out Sweet Tomatoes if you have a kid with ADHD. It might be the best dining out experience you've ever experienced with your child! You might not even need to use all those activities you packed in your purse, or get out their electronic devices! Although, if you get a 'Learn Danish' app, you never know what kind of interesting phrases you could learn.


Friday, July 12, 2013

Neuropsych Results

This past week, Alex and I got the results from Ben, Jonah, and Aidan's neuropsychological testing. It was three and a half hours of intense information. Most of which was nothing new. Most of which we already knew. But there were some surprises, which made me glad we had done the testing now instead of waiting.

Aidan does not have auditory processing disorder. That was a question that had been plaguing me, and I'm grateful to have the answer to that. He does, however, have ADHD- Inattentive Type. No surprise. When you have Tourette Syndrome, ADHD usually comes along for the ride. The thing that did surprise us was the level of Aidan's anxiety. He qualifies for the diagnosis of generalized anxiety disorder. His anxiety affects him in many, many areas of life, every single day. And apparently it is not being managed effectively yet, so we have some work to do to make life more enjoyable for our youngest boy. The doctor said this was her biggest concern regarding Aidan, the level of his anxiety.

Benjamin's diagnoses stayed the same, ADHD- Combined Type (which means he's sometimes impulsive and distracted, and also sometimes hyperactive), Tourette Syndrome, Dysgraphia (which is a disability involving the fine motor skills needed for writing), Sensory Processing Disorder, etc. The doctor said he still qualifies for the Bipolar Disorder diagnosis, but it could be said that his Bipolar is in remission since we have the intense rages much more under control. I like that word, "remission." It's a hopeful word; it makes me think that things will only continue to get better from here. And that hopefully we will never, ever, ever go back to having to deal with multiple rages every day. 

One thing that was a big surprise about Ben's test results was that he has a learning disability in math. There are several areas of mathematics that he is significantly behind on and needs an IEP at school to help him deal with this. That was amazing. I am so amazed by his ability to cope with his weaknesses in a way that makes the world think he is just fine. Struggling, but fine. The doctor said that all the boys are amazing at using their strengths as a way of coping with their weaknesses. They all have incredible visual and verbal IQ's, so they use that to compensate for their extremely weak areas, like Ben's math skills.

Jonah still has many of the same diagnoses as before also. He has the diagnoses of Tourette's, ADHD- Inattentive Type, Dysgraphia, Sensory Processing Disorder. His diagnosis of Bipolar Disorder has been taken away. His symptoms have led to a new diagnosis of generalized anxiety disorder with depressive symptoms. AND, he ALSO has a math learning disability! Those two brains are so similar! Jonah's struggles lie mostly in one area of math, but according to the doctor, he would still qualify for an IEP to address these challenging areas. 

The doctor said what likable, sweet boys we have, and that if she hadn't gotten the background info on all the diagnoses the boys carry, she wouldn't have known they had so many challenges when she first met them. She said that is a testimony to how hard Alex and I have worked to give the boys as many interventions and coping skills as possible. I said it's also been a detriment to getting the boys interventions. It's taken a lot longer to convince the world that our boys have significant challenges across many areas because they appear to be fine if you don't really know them well. The doctor said she hadn't thought of that. 

The doctor also said she had been nervous when she got our information- three siblings, all with a lot of complicated diagnoses, all to be tested within two weeks. She thought "Who agreed to THIS?!?" She admitted thinking that some parents are hypochondriacs, obtaining diagnoses whether they are accurate or not, so there was probably a strong possibility that our boys did not have all the special needs we thought they did.

Then the doctor admitted we were right- that they did in fact have accurate diagnoses coming in to testing, that she can tell their medications had been very carefully thought-out, and that she didn't know how we deal with everything we deal with and keep up with it all.

There was so much much more we discussed during our meeting, but those are the highlights. We had many questions answered. We had many worries put to rest, and some worries were validated. I cannot fathom how Ben and Jonah made it through 5th grade, both having significant learning disabilities in math. It was such a struggle this year for all the boys at school, but many times I thought it could be for reasons other than the fact that they may have learning disabilities. I usually blamed myself- I haven't spent the time teaching them how to type yet. Apparently I haven't spent enough time practicing math facts with them, because they are still completely inept in that area no matter how hard they work at it. But now a doctor has told me that it's not my fault. It's just how the boys' brains work. I'm trying to process that and believe it. 

The doctor said that we are on her list of top five families she's loved to work with. Ever. How touching is that!?! (I thought about asking why we weren't on the list of top THREE families she's ever worked with, but thought that might decrease our likeability and make me seem like an obsessive overachiever and perfectionist. And show her that I'm slightly neurotic.) She said our counselors who work with the boys every week had very kind things to say about us. She said that given the boys' rough start to life, and their complicated, significant diagnoses, they are doing simply amazingly well. She said that's because of the work Alex and I do with them. She said she can't think of any other family who could handle our challenges this well. She said that one child with one of these diagnoses could derail a family, and our family is functioning and, in fact, thriving. She laughed because we know our kids so well, that during our intake interviews, Alex and I discussed how one of the twins has a tic where he snorts out, and the other twin has a tic where he snorts in while he inhales. She said the laid-back, resilient atmosphere of our parenting has enable the boys to thrive. I didn't cry through the whole thing until she started saying such nice things.

And I don't write all these glowing remarks in order to boast or gloat or get a pat on the back. I write them first of all, to try to believe them myself. And second of all, to show other families that all the therapies, medicines, doctor visits, psychiatrist visits, chiropractic appointments, massage appointments, school meetings, sleepless nights, reward charts, diet changes, essential oils, vitamins, probiotics, schedules...it's all worth it. Because if you can help your kid succeed even a little more with one of these things, or all of them, you've made a world of difference in his life. It's crazy to look at all we've done for our kids and realize that it has actually helped them. 

The doctor said that we need to start teaching the boys about how these diagnoses are life-long. They will always struggle with these things. And there are coping skills they will need in order to succeed on their own in life. She said to start thinking of things like getting Jonah and Ben phones to program alerts for things like when to take their medications. Or get dressed in the morning. Or when it's a therapy day. Or to come home when they're out riding bikes with friends. She said that we're right in letting a lot of things go (like frequency of showers or teeth brushing- which drives me insane) and picking our battles carefully. 

The doctor's report is full of recommendations for the school about ways to help the boys. So my first order of business after our meeting was to ship off an email to the director of special education in our district, who fortunately or unfortunately, knows me already. I wanted to give her a heads up that we will need an IEP meeting in the Fall for both Jonah and Ben. Jonah was already going to have one to see if he can qualify for an IEP under the category of Mental Health, given his extreme anxiety and school avoidance. So we'll just add "Learning Disability in Math" to that laundry list. But now I know Ben will also need an IEP meeting due to his own learning disability. The boys also need things like study skills training, organizational training, different things like this that will help them learn to be more successful and independent.

I was thinking about it the other day, mulling all this over and trying to wrap my brain around everything. I thought about how there's always a big discussion about whether to label your children or not. Many parents I know are afraid for their child to have a label, thinking this will bring on negative consequences and reactions. I understand that perspective. You always want to protect your child in any way possible. In our experience, however, accurately labeling our children with their diagnoses has opened up a world of services to them. It has slowly brought understanding, also, as we continue to learn, and educate the people in our lives, about the boys' needs. 

I realized this week that whether my boys have labels, official diagnoses, or not, they are who they are. A label doesn't change that. Benjamin was Benjamin before his neuropsych testing, and he had a learning disability before the testing too. I just didn't know it. Now that I know it, I can advocate even more effectively for him at school, and in the world at large. Knowing your kids struggle, and will struggle forever, is really hard. But Alex and I have always said we'd rather know everything, even the hard stuff, so we can get our kids the help they need. Yes, it's probably easier in some ways to put your head in the sand and not search for answers that you know will be challenging. But in the long run, what we've chosen to do is just get as much knowledge as we can and go from there. 

We got a lot of information from the neuropsych testing, and I feel like we were given some direction about how to move forward. Most things we do at home will not change, but things at school must change. The boys need a lot more support in order to succeed, and I'm prepared to help bring that about. So far, we've always had a great team of educators working together with our family to try and give the boys everything they really need to be successful at school. I'm a little nervous about all the new information I have now that I have to advocate about with school, but you know me. I'm up for any challenge where my kids are concerned. 

The journey is far from over. The struggles are still very challenging every day: irritability, mood problems, impulsivity, defiance, sleeplessness, lack of cooperation or follow-through, aggression, disorganization, depression, anxiety about everything under the sun, sensory issues that impact all our activities...but just to look at our path so far and take a moment to breathe and tell ourselves that we've done the best we can for our kids and it is paying off, that's an achievement. I'm grateful for more knowledge about my boys. I am grateful for the beautiful, resilient, strong spirits that they are. I am grateful for all the people who support us every single day. I am grateful for the love and understanding we feel from so many different corners of the world. All this gives me the hope and courage to keep putting one foot in front of the other and continue the journey.

Wednesday, July 3, 2013

PB Challenge Gone Wrong

Yesterday was one of those days that only our family seems to have. I'll set the stage for you. At 9:45 Monday night, Aidan popped out of bed, saying he was done sleeping and needed to watch TV. I have been exhausted lately because of lack of sleep, days of neuropsych testing for the boys, among other things, so I was already in bed getting ready for sleep. I turned off the light and insisted Aidan just go back to sleep. If it was in our bed that he slept, fine. So he did.

At 11:30 pm, Ella woke up. For the first time that night. I put her back to bed, laid with her for a while until she was asleep, then went back to my bed at 12:15. At 3:30 am, Ella woke again. I repeated the Back To Bed Fun that we have every night. At about 4, I went back to my bed. At 4:30, Ella came into our room. Again. She got in our bed. And didn't go back to sleep. 

The wonderful thing about being up from 3:30 am on is that you have PLENTY of time to shave your legs AND do your hair.

I know a medical professional who had what she thought were symptoms of a brain tumor or Alzheimer's, so she had neuropsychological testing done. They told her that she needed a nap. Literally. She was so exhausted from constant sleep deprivation that her whole being was suffering. I've survived 11 years of sleep deprivation, but it's getting harder and harder to keep going. 

I was beyond exhausted (and not just a little crabby) yesterday. I felt sick and migrainey and very irritable. And so did my daughter. Alex wasn't going be home until who knows when yesterday because he got to go to a baseball game with friends, which I am glad about. He never gets to just spend time with friends, hanging out. But I felt sad for me. Because it was a long, long day.

Ollie had a grooming appointment early in the morning, so we dropped him off before we started our day. We made it through our morning therapies, and I was grateful to see the faces of our sweet therapists. They always make me feel hopeful and sane. They listened to my Ella Sleep Woes, like they always do, and had some suggestions to try, like they always do. They were bright rays of sunshine in my tired, gray world today. They must have known that they would need to pick me up and spur me on today, because they both wore the most beautiful colors of clothing I've ever seen. 

You can tell I'm pretty loopy when even the colors of our therapist's clothing make me feel like crying because they were so beautiful and joyful and just made me want to hug them. Which I didn't because in my emotionally and physically fragile state, I would have dissolved into a puddle of tears and never recovered.

Then we picked up Ollie. (And went to buy some more fabric for the quilt that I'm making. Don't tell the Budget Master.) We got home for lunch, which only half the kids ate because that's how life goes here with eating. You never know who will eat what or when. I told the kids I had to lay down to rest because I was feeling so sick. 

They only woke me up 5 times in an hour. 

Then Jonah and I had an allergist appointment. It was my yearly checkup so that I could tell the allergist what I tell her every year- my allergy meds don't work. And she could tell me what she tells me every year- I need allergy shots, that's the only thing left to try. Like I have time for that. Ha.

Jonah was going to do his peanut butter challenge. His blood and skin tests have come back negative, so he was supposed to go into the allergist's office and eat a bunch of peanut butter and see if he had a reaction. The idea being that if he did react, he'd be in a safe place with medical help available. We all thought Jonah had outgrown his allergy, and were pretty excited to do the challenge. I brought all the kids since I didn't have a babysitter and Alex was at work. Aidan was too nervous to do the challenge, even though his tests have come back negative also. I thought having him watch Jonah do the test would be a great idea so he could see how everything would be ok. This would hopefully give him confidence to do his own peanut challenge sometime in the future.

Jonah started by eating a fourth of a peanut butter cup. Faced with the candy on the plate, he wasn't too excited all of sudden. In fact, I could tell he really didn't want to do the challenge. But we all encouraged him to try, and he did. He said the candy was terrible. (I should be so lucky as to think the taste of peanut butter cups is disgusting!)

I had brought the other kids some candy to eat in solidarity with their brother, so we had a little candy party. We waited a half hour. Jonah didn't have any symptoms, except anxiety. Extreme anxiety. 

Next Jonah had to eat a half of a peanut butter cup. He really didn't want to. Again, we encouraged him. By this point, Jonah's brothers and sister had huge sugar rushes and were bouncing off the walls of the little office like ping pong balls. Fun stuff. 

A few minutes after eating the peanut butter, Jonah said his eyes felt itchy. Then his nose got stuffy. Then he sneezed twice. Then he said his throat felt itchy, at which point the doctor brought him some antihystemine. Then Jonah started getting hives. Then his throat felt like it was swelling. At which point the doctor called off the testing and brought in an epi-pen. Which made all my children totally freak out. Ella and Aidan sat in their chairs, plugging their ears and whimpering. Ben was so sweet and brave, and did what he always does when one of the kids has an emergency- he took care of the rest of the kids for me. He asked them if they wanted to go out to the waiting room with him. Mostly, I think, because he didn't want to see his twin have to deal with what was coming. Aidan and Ella were very relieved to have Ben take them out of the office. I said yet another silent prayer of thanks for my sweet Ben.

Then we all turned to Jonah, who was a complete mess at this point. He was petrified of the shot, totally freaking out about his allergy symptoms...so the doctor and I held Jonah still while the nurse gave him the epi-pen. He immediately started feeling the medicine take effect, which gave him hope that he was not, in fact, going to die. His nose un-stuffed, his eyes stopped itching, and his skin began to lose its bright redness. The other symptoms started going away after a few minutes. Jonah got very pale and weak and jittery, and his heart beat was very fast, but those were all things you can expect when you have an epi-pen injection. It was better than his throat closing up.

The doctor came back to check on Jonah every few minutes, and said she has never ever had this happen before- where someone tested negative for an allergen and then had a reaction like Jonah did when they ingested the allergen. We laughed when she said, "Only your family, Carrie." Yep, that's the way we roll around here. Out of the ordinary, breaking the Rule Of Norm. And not always in good ways. 

Jonah got to follow up the epi-pen with some oral steroids, to make sure all his symptoms stayed gone. We all started relaxing a bit as Jonah returned to normal, and because the kids felt such stress relief when they saw their brother would be ok, they went even more bonkers. In that tiny little office. We actually all (yes, even Mama) got a big case of the giggles, despite my trying to quiet everyone down, and I'm sure the doctor was quite happy to see our family walk out her door. When intense stress is suddenly lifted, our little family tends to laugh with joy. And giddiness. And we usually can't stop. And the more I try to quiet us all down, the louder we all get, for some reason.

Our disgruntled, worn out little tribe got home, got dinner, and I got the kids ready for bed. I still felt terrible, but you have to do what you have to do when you're the only parent home. The kids went to bed early after the intense day they'd all had. I went to bed early too, because I felt horrible. Just as I was about to turn off the TV and go to sleep, much earlier than usual in an effort to get a few really solid hours before Ella's wakefulness started, Jonah woke up. He came in our bed, and cried and thrashed in pain from where he had had the epi-pen injection. So I got him Tylenol. And an ice pack. And Melatonin to invite sleep faster. And lavender essential oil for his pillow. And my iPod and earphones so he could listen to relaxing music. I held the ice pack on Jonah's sore arm. I rubbed his back. I soothed him the best I could.

The thing that always pierces me to my core is that my kids always say "Thank you for taking such good care of me, Mama." Oof. Right to the heart. They are such grateful souls and I love that about them.

See why I never get rest? What can you do if your kid needs you? So after a few hours of Jonah's angst, thrashing, and anxiety that his allergy symptoms would come back and kill him in his sleep, along with his high level of pain, he finally fell back to sleep. I slept for an hour before Ella decided to wake up for a few hours. 

As I laid in the dark, first comforting Jonah and then comforting Ella, my tears just kept leaking out. I'm so worn out. And I felt so bad that we always have crazy things like this happen to our kids. Nothing is just easy and normal, it seems. My kid was supposed to not have an allergic reaction today, but he did and it ended up to be scary and traumatizing. (Which, by the way, did NOTHING to convince Aidan to do the peanut challenge. Ever. Which is fine with me.) My toddler is supposed to know how to sleep through the night by now. But she doesn't. 

I used to think it was a coverup when I'd hear that celebrities had checked into a "clinic" for "exhaustion." Ha. What I wouldn't give to "check into a clinic" myself right now. Exhaustion is real. It makes you feel like your insides are disintegrating and your brain is turning to snot.

Today my body gave out. I felt absolutely terrible, so I had to ask Alex to stay home and do The Kid Thing. I couldn't even get out of bed I felt so miserable. This does tend to happen to me- I keep going at an insane pace without true rest until my body gives up and I get sick and have to stay in bed for a day. I took gobs of migraine medicine, which seems to have helped. I stayed in bed all day. (Except to do two loads of laundry because Ella is running out of underwear because she keeps having accidents and find Aidan's shoes so he would get his tushy in the car for therapy and feed the dog and take the dog out and give kids meds this morning...) I took a short snooze. I feel like I'm on the mend. My head doesn't feel crazy and throbby anymore, so that's a good sign.

The things that have happened this week continue to remind me that there really is no "normal." And that you should never take anything for granted. The allergist said many other doctors she knows have their patients do allergy challenges at home if their skin and blood tests come back negative, but since she's a "nervous nelly" she likes to do them at her office. I said a sincere thank you. I would not have liked to have had that experience at home with Jonah, all on our own. 

We are armed with new epi-pens for Aidan and Jonah. And the knowledge that although trace amounts of exposure for both boys are probably fine, Jonah for sure, and probably Aidan too, are still in the Allergic To Peanuts category. It's good to have knowledge. And it's good to be able to have a husband who is capable of being there for our kids so I can "check into my clinic"- my bed- for a day.