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Sunday, March 31, 2013

Aidan and the Beach

While we were in Florida for Spring Break, Aidan had to deal with a lot of anxiety and sensory issues. Things that many of us find relaxing and enjoyable are tricky for kids like Aidan to cope with. Vacations are hard in general for him because everything is different from what he is used to. All of his surroundings, the things that keep him grounded, have changed, and he is supposed to just go with the flow. A different routine, different bed, different activities, different weather, different clothes, different toilet paper...lots of "different." 

I love that vacations give our kids the chance to practice being flexible and adjusting to change. It's interesting to see how they handle the situations they are put in. 
For instance, the beach we stayed on was absolutely magnificent. White, soft sand, warm beneath our feet. Waves washing against the shore in a lullaby of rhythmic rush. Endless seashells to discover. My definition of perfect vacation. But when Aidan went for a walk on the beach, I saw it through different eyes- Aidan's eyes. The wind whipped the waves into a loud, crashing frenzy. The sand swirled around his small sensitive feet, battering them with what felt like sandpaper. The seashells beneath his feet made each step feel as though he were being cut with shards of glass. The sun was bright for his unprotected eyes. Sensory overload. 

As we walked, Aidan fell farther and farther behind the group. Daddy and I walked with him, trying to encourage him, spur him on, figure out how to help him navigate this foreign terrain. We offered his flip flops as a solution. Aidan tried putting on his shoes so the shells wouldn't dig into him, but then could only shuffle his feet in the sand which made the sand get into his flip flops which made him more distraught. He started to shut down more and more, walking slower and not answering us when we talked to him. 

Daddy offered to give Aidan a piggy back ride. I lifted Aidan up to the safety of Daddy, hoping this would help Aidan be able to enjoy the beach experience more. But after a little while, Aidan said he didn't want to be carried after all. Back to shuffling slowly on the beach, watching each step as he laid his foot down, afraid of the feeling of sharp shells and scratchy sand that was sure to bombard his body. 

We ended up just walking slowly with Aidan. We tried not to rush him as he putzed along. We found a path that had more soft sand and fewer sharp shells to walk on. Aidan didn't want his shoes, didn't want to be carried, didn't know what would help him feel better about the beach. 

When we got home a few days later, I asked his Occupational Therapist, The Amazing Laurie, if Aidan could come in for a tune up, even though I had originally said we'd be taking the week off from therapies. I told Laurie about what had happened in Florida, some of the challenges Aidan had had with anxiety and sensory issues. After her time with Aidan, Laurie came out to talk to me. She said she and Aidan had tried to problem solve some more ways he could enjoy a walk on the beach, and she had suggested wearing socks for his walk. Aidan had thoughtfully responded that he thought the sand would be so little that it would go right through his socks and bother his feet even more. That was something neither Laurie or I had considered. It struck me that Aidan was so reflective and in tune with how his body would react to something. Laurie said she wonders if this is happening to Aidan more than we realize- that he has a response to a sensory challenge that in turn causes anxiety, which makes him just shut down in order to cope. I think many times I'm not even aware of the fact that Aidan is having trouble or what specifically is causing it. 

Laurie also asked what happens in situations like the beach, or other times when Aidan is overwhelmed. I said he usually shuts down and is extremely indecisive about what to do to help himself. He can't make a simple choice in those moments, so I make the choice for him. For instance, he was afraid of going to the pool in Florida but he couldn't explain why. He was so adamant that he wanted to stay in the hotel room and not go to the pool, that he got very upset about the whole thing, having a meltdown. I finally just picked him up and carried him out of the room and down the hotel hallway. As he kicked and screamed, I said softly to Aidan that I would take care of him. I told him knew he was worried about something but I would help him. He quieted down and said "Ok." Later, Aidan was able to explain that he hates the feeling of his swimming suit material against his skin because it makes him cold. This is what was causing all that anxiety up in the hotel room.

I told Laurie that I usually make a decision for Aidan in his moments of Overwhelmedness, because I know what he needs and what will happen because of my decision, and then it usually always works out well and Aidan eventually recovers. Laurie asked if I had talked with Aidan about this process- where he gets overwhelmed, I help him by making a choice for him about what needs to be done, and then it all works out. I said no, actually! Duh! Why didn't I think of explaining that to Aidan! I do those things but I've never discussed that with Aidan. That Amazing Laurie. So genius.
So as Aidan lay on his back on the waiting room floor of The Therapy Tree that afternoon, happy and spent from his OT session, The Amazing Laurie and I explained to Aidan how when he is totally overwhelmed, Mama is going to help him by making a decision for him. If he knows he is struggling, he can ask me for help. Or if I see him struggling, I will know I should help him. Because Mama knows in her heart what Aidan needs to feel better. We gave him concrete examples of situations where this has happened so that he would really understand. A smile lit up his sweet little face and there was a hint of relief in his eyes. Now he knows for sure, in Aidan Terms, that Mama is here to take care of him and knows how to help him even when he doesn't know how to help himself.
We'll have to keep brainstorming about how to handle a beach. Socks- out. Flip flops- out. Bare feet- out. Piggy back rides- out. We'll find something that works eventually. Sometimes it just takes some time to try things and see if they work or not. I just figure the more situations Aidan is put in like the beach, where he has to problem solve in order to cope, the better prepared he will be as life goes on. Every challenging situation gives him practice for the next challenge he faces. He's a feisty little guy, and that spunk will serve him well as he marches through new challenges every day.

Monday, March 25, 2013

Florida Bound!

We are lucky enough to be having a fabulous Spring Break trip to Clearwater Beach, FL, with one of our sets of grandparents. We flew out of Chicago yesterday, despite a long weather delay. Aidan has been having anxiety about his ears popping on the airplane for about two weeks, and was adamant that he was not accompanying us on our lovely vacation. When our taxi came to take us to the airport, he decided grudgingly that he would come too.

Ben and Jonah stayed overnight at Grandpa and Grandma's house the night before our trip. They got to pick out a special dinner that night, watch special TV shows, and sleep in Grandma's special rooms. Our kids are lucky to have three wonderful sets of grandparents, and they get a huge kick out of spending time with all of them.

The best part about that arrangement the night before our trip was that I had time to make sure everything was packed and ready to go without too much frantic Kid Energy. When we're preparing for a trip, the kids are like animals who sense a storm and go crazy. So I spend most of my time calming crazed kids down and then there's no time for packing, no matter how early I begin the whole process of preparing for a trip. Having only two kids at home just makes getting ready easier. Then all four kids get more attention and everyone is happier. Especially Mommy.

We all got through the excitement of checking into the airport and going through security easily. We have gone on a Spring Break trip with Grandma and Grandpa for four years in a row now, so all the grownups have traveling with the kids down to a science. Aidan was still in Shut Down Mode, his nerves a mess with dread about the impending flight. But we just carried on and carried Aidan along with us.

We got breakfast in the airport and ate on the floor at our gate because there were no seats left. Our flight was delayed several times because of a storm over Florida. Jonah, especially, has a very hard time with situations like this. He can't handle boredom well. He can't handle waiting well. He can't handle changes well. He can't handle the unexpected well. So it was a challenge for our guy to maintain his cool while experiencing the stress of all of those things at once. He worked hard to deal with the situation as best he could. I was proud of him.

I found some earplugs at a store in the airport for Aidan to cut down on the ear-popping he was so worried about. For once that morning, he beamed.

As the time to board the plane finally approached, Ella started totally freaking out. She wanted to be held, and even requested her blankie- something that is reserved for sleep or very stressful situations. I finally got out of her through her tears and whimpering that she was scared of landing. Landing on an airplane is very loud and dramatic and the force of it pushes your whole body forward in your seat. I guess Ella remembered that from our Spring Break flight last year, and was scared to death.

As we entered the walkway leading to the airplane, I held Ella as she cried, and did my best to calm her fears. When we entered the airplane, we touched the outside of the door, and laughed together that we were touching the outside of a big, cool airplane! But Ella's laughter was short-lived. She sat on my lap in my seat and cried as the other passengers boarded the plane. We sat with Jonah, who was thrilled that this vacation was FINALLY getting underway! Then a flight attendant told us that Ella had to be buckled into her own seat because she is three years old. I should have lied and said she was two.

I gave all the kids a bag of chewy candy for take-off, since they don't like gum. And we watched the TV on the seat in front of us. Ella did well during take-off, except for when Jonah opened the window shade and showed his sister the clouds we were flying through. Then she got scared again.

About every three minutes during our flight, Ella would ask me "Is this Landing?" I would say no, this isn't landing. We have a long time until we land. Watch four more shows and then we'll land.

We had to wait to land because of the bad weather, so that extended Ella's dread. As we flew over Panama City, Ella sat on my lap and cried while she waited for the inevitable landing. She cried so much she fell asleep just before we landed. I avoided the flight attendant's looks and prayed she would let Ella sleep on my lap until we did land, and luckily she did. Ella slept peacefully in my arms throughout the entire landing.

Aidan was bright-eyed and smiley as we exited the plane. Ben had gotten to sit by Grandma during the flight, so he had been super excited and happy. Jonah had had to deal with MORE waiting and loss of control and unknown as we were in our holding pattern for an extra hour, waiting for weather to clear so we could land. He was happy to be on the ground. And Ella was her bubbly little self, relieved that she didn't have to deal with the landing part of the airplane ride. I think the grownups were all worn out from trying to make the kids' experience as peaceful and happy as possible.

We are staying at a gorgeous hotel, the Sandpearl Resort, right on a soft white beach. It's chilly here right now, but sunny and just beautiful. Last night when we arrived, we let the kids swim until dark and had dinner at the pool. Even though it was pretty cold, the kids were thrilled to swim.

Today was our big swimming day, because it will be the warmest day of our stay and the pool is outside. Aidan had a little panic attack this morning because of being worried about getting cold in the pool. He just refused to leave the hotel room. His anxiety and meltdown made Ben and Jonah feel anxious and they started getting riled up because of that. Finally we had Jonah and Ben take Ella into the hallway to wait, Daddy took the backpack, and I just picked Aidan up and we walked out the hotel door. Aidan was not happy.

As we walked down the hall and I held yet another whimpering, scared child in my arms, I told Aidan that I knew he was worried about some things (sometimes he can't verbalize what he's worried about, but just knows he is worried), but I would take care of him and make sure he was ok. After a minute of letting that sink in, he said "Ok. I'll go with you." Good, because we're half way to the pool already. Once we got in the elevator, Aidan was able to leave my arms, put on his shoes, and participate in fighting about who got to push which elevator button. Ah, back to normal.

Aidan stayed in his clothes for part of the morning, unwilling to put on his swimming suit. It was chilly, but after walking the beach looking for seashells, Jonah and Ben couldn't wait to hit the pool. I talked to Aidan about what his worries were. He said when his suit and swim shirt get wet, he doesn't like the cold feeling on his skin of the material. We talked about strategies to deal with this problem, and eventually we came up with a plan about how to successfully swim. Because he did want to swim. His anxiety was just creating a roadblock we needed to stomp out first.

We had a great, relaxing day. The sun felt so good on our skin, despite the wind and chill. We bundled up and Grandma and I took turns taking Ella to the beach. All she wanted to do was hold our hands and run in the soft sand. When I took her, I sat in the sand while she walked away from me. Then she would turn, arms outstretched, and run at me full-force. I would open my arms and she would plow into me, knocking me onto my back in the sand. She would shake with joyful laughter. We had so much fun.
Grandpa isn't feeling well, so he had some time to rest today. Daddy watched the boys play in the pool. Once Aidan got in, he refused to get out. Jonah was the one who finally got Aidan into the water by showing him a cool way to jump in. When Jonah got out at the end of the day to warm up, Ben stayed in the pool and played with Aidan. Sometimes there is nothing better than a big brother.

At one point today, Ella pinched her hand. She cried for an eternity, as only Ella can. Because Ella tends to be on the EXTREMELY sensitive side of the SPD spectrum, the rest of the day she has had to have her entire lower arm and hand wrapped in a sturdy napkin so she doesn't see the red mark the pinch left on her soft, perfect skin. It's a little ridiculous. But she won't agree to a bandaid because she hates bandaids. She won't put her hand in her pocket so as not to see the mark. She just wants her entire arm wrapped up and incapacitated. She went to a fancy dinner at a bistro with the napkin on her arm. She even had to go to bed with the napkin on her arm.

I always think it's great fun to go on vacation with our family, because it's so interesting. Maybe it's the psych major in my coming out, but there is never a dull moment. Someone is always worried about something to the point of having a complete meltdown. Someone else is stressed about a lack of routine and not knowing when something will happen. Someone won't eat her burger at lunch because it looks wrong somehow- probably because she is used to squished, flat, Happy Meal burgers as opposed to this real, round burger she was presented with today. Someone else is terrified of fish so is dreading the visit to the aquarium tomorrow. (The only think keeping this particular boy- Ben- calm about the visit is that Grandma said if he tries the aquarium and hates it, she'll wait outside with him, bless her soul.)

I love vacations despite the fact that they are a lot of work. As all parents know, it would be a lot easier to stay home. But I think about how much our trips enrich the kids' lives. They get to see things we would never see without these Grandparent Trips. They are privileged to go places many people will never go. They are put into situations that challenge them in new ways. Their weaknesses are brought to the surface and we have to find ways to conquer their fears. They have to practice things like waiting. Or being flexible.

Over the years of our Spring Break trips, I have definitely seen a big change for the positive in Ben and Jonah especially, since they are the oldest. Granted, Jonah insisted at the airport that I find a way to make the pilot let us on the airplane and just fly through the bad weather in Florida, but when I explained that there are some things we have no control over and sometimes we just have to wait, he had the chance to practice having patience.

Our Spring Break trips are magical. We go to amazing places we would never see without Grandpa and Grandma taking us there. We have the luxury of having a one-to-one kid-to-adult ratio, which makes traveling so much easier. We have time with grandparents who obviously, genuinely love and cherish our kids (as do all their grandparents, of course). Grandpa and Grandma are not worried about what our kids might do or say that will be inappropriate or draw unwanted attention. They are not afraid to show our kids a part of the world they would normally not get to see. They are not worried about our kids having meltdowns. They know the kids will do their best to behave in an appropriate way, and the kids always live up to that expectation.

These incredible trips we are so privileged to be a part of are enriching our kids' lives in so many ways. I have always loved to travel because it was a huge part of my life as a kid, and I'm so excited that because of Grandma and Grandpa's huge hearts, my kids get to experience airplanes and hotels and beaches and pools and aquariums. I love every part of our Spring Break trips. The view of the beach is breathtaking. The chocolates on our pillows at night are a treat. The bacon at breakfast that I didn't have to make is so tasty. The crisp sheets on my bed that I also didn't have to make are relaxing. But the best part about our trip is being with Grandma and Grandpa, and watching the generation before me and the generation after me light up each others' world.




- Posted using BlogPress from my iPad

Thursday, March 14, 2013

Laugh or You'll Go Bonkers

Here's what happened this week with my sick kiddos. It's a saga, I'm warning you.

Saturday night, Ella spiked a 103.1 degree fever, horrible cough, and cold symptoms. I took her to the pediatrician the next morning, who tested for strep and the flu, both which came back negative. Doctor #1, as we'll call him, told me that she probably just had a virus that would run its course, give her fluids and Tylenol, blah blah blah. If she still had the fever on Tuesday, I should bring her back. Then he actually said "Good luck." As if that's the only thing he could give me. Luck. Hm, didn't fill me with a lot of confidence, but I took my sick, hot baby home.

Guess where we went on Tuesday morning? Yep, back to Dr. #1. Ella had had a fever all weekend and was just not doing well. He saw us and said "Still not better?" Now you have to imagine an older gentleman, who is very good at his doctor-y job, but sort of aloof and grumpy- looking. Not Dr. Warm Fuzzies. Dr. #1 checked Ella over again and said that now he heard crackles in her right lung. Which indicated pneumonia. The doctor did a test to see if send away to see if the pneumonia was a type that is resistant to the normal drugs kids are put on. Ella got medicine and the doctor sent us on our way, again with the "Good luck." I think he means it in a nice way but it comes of in a snarky, doubtful way. 

Overnight, I thought Ella was improving a tiny bit. She actually slept for about 2 consecutive hours, about twice that night! I have been sleeping in Ella's bed next to her, so it's been a tiring, scrunched week of sleep. On Wednesday morning, Jonah was home from school with a tummy ache. Since we've all, except Jonah, had what apparently is not the flu but the Noro Virus (Doctor #1 informed me), I wasn't sure if Jonah's tummy ache was due to the dreaded Noro Virus or to anxiety. Ella seemed to be doing ok that morning, eating a tiny bit again, walking around a little more. Her fever was down to around 100 degrees. 
Baby Aidan with a bubble hat
Then about noon she started getting really fussy and wanted to just be held. I stopped what I was doing and sat down on the couch to cuddle her and rest. We watched "Spongebob"- one of Ella's top three favorite shows, but she kept complaining that she was tired. Her body felt different as I held her. She wasn't able to hold herself up on me at all, she just slumped into me with her whole being. Then she fell asleep. That never happens. I knew something was up. 

When Ella woke up from her nap, I took her temperature because she felt like she was literally on fire. She was at 103.7. Yikes. My stomach clenched with fear. Ella couldn't really wake up. She just kept laying down and whining. I noticed her tummy when she breathed looked like when Ben and Jonah got RSV as preemies and were almost hospitalized AGAIN after I had finally gotten them home from the NICU. I was worried about Ella. I called the pediatrician and spoke with a nurse. She took the information and tracked down Dr. #1, and then called me back. She said that Dr. #1 had said "Well, Ella wasn't THAT bad yesterday, how could she have gotten so much worse?"

Nice.

The nurse said she had told Dr. #1 that Mom had noticed a significant change in Ella and felt that she needed to be seen. I thanked the nurse for advocating for me. She said that after many years of talking to moms, a mom just knows when there is something really wrong with her child. So Ella and I went back to the doctor.

Dr. #1 was at the office, but too booked to see us, so we saw Dr. #2. I explained everything that I was worried about as Ella lay limp and burning in my arms. Dr. #2 checked Ella over and said he heard a lot of crackling in her right lung. And her oxygen saturation level was poor. And she was dehydrated. And she shouldn't be having such high fevers if the meds were working, so obviously the pneumonia was progressing and she was not responding to the current meds. 

Just let me add, I love Dr. #2. I love most of our pediatricians, and I know them all because we're there a LOT. But Dr. #2 has a way about him that is calm and makes you feel like you have time to think of, AND ask, all your questions. He made me want to cry just by having him there. I know he respects Mommies. 

Dr. #2 said he was going to pull Dr. #1 in to check Ella also, because he wanted to hear if there was a change from yesterday in Ella's lung. Dr. #1 came in, didn't even really speak to me, and started listening to Ella's chest. Then he went out to talk with Dr. #2. He said that the pneumonia had definitely taken a more serious turn. The test to see if it was the resistant kind of bacteria wasn't back yet. So the doctors discussed in the hallway how to proceed. As my little baby kept whimpering "I want to go home now." She must have known what was coming. 

Blood test.

Ella had a blood test to see what her white cell count was, and that would determine the way the doctors chose to treat her. We needed to find out if the pneumonia was in her blood. Scary. We didn't know if Ella would need to be hospitalized.

The blood test did not go well because although there were three of us holding Ella still, the nurse could still not find a vein. Today Ella has a lovely large purple bruise. Ella screamed until she turned red, but didn't shed any tears because her body was all dried up inside. That was so hard. I think they need to film these things and show them to people who are debating whether to have children. It is so painful to have to put your children through pain even if you know it's for their own good.

Several times while Dr. #2 was talking with me, I felt like I was going to burst into tears. Like when you know you have to throw up but it doesn't come right away and you're able to choke it back. Those were my tears. You're just in such a scary place and you don't know what the answers will be about one of the loves of your life, and you're helpless. So after the blood test I knew we had 15 minutes until the doctor came back in with the results, so I held Ella and she wept without tears and I wept enough for both of us. Man, sometimes parenthood really sucks.

Sometimes parenthood is great- Fall 2008
The doctor came back with the good news that Ella's blood results were good. No pneumonia in her blood, and so what both doctors thought they should do is add another medication to Ella's growing list, and see if that would help heal her tiny body. There was a chance it wouldn't help, because it may be that the pneumonia is being caused by the medication-resistant bacteria, in which case she would need medication that is not approved for use in children. Fantastic. Sign us up for that!

The doctor said if anything changed at all overnight we needed to go to an ER immediately. If Ella's breathing worsened, if her fever got higher, if she got more lethargic, if she got dehydrated...I said she IS dehydrated! What should I do? The doctor said we could go to the hospital, get oxygen and fluids, and probably a chest x-ray, or I could take her home and try every possible way to get fluids into her. We decided on the second option. I can't stand having my kids in hospitals, after them being there for so long after each of their premature births. The doctor had confidence that I could keep Ella as healthy overnight as a hospital could. I wasn't filled with such optimism, but I would try.

The night was long, as I slept beside Ella in order to feel her breath and the level of heat she was giving off. Ella slept like a rock for several hours. Then she got up, needing a drink and a snack, and after a couple hours of wakefulness, fell back to sleep for a couple more hours. I laid awake most of the night, watching Ella's back rise and fall. I would carefully sneak my hand under her blankets to feel whether she was struggling for air. But she seemed to just be plugging along, so I finally drifted off.

This morning, the boys all got on the bus for school. Ella woke up and first thing, rolled over and smiled at me. That kid can smile through anything. She seemed weak, but mentally, almost her quick normal self. At 9 am, the school nurse called to tell me that Aidan was in her office, complaining of a bad ear ache. He's had a cough for about 2 weeks, and last night had told Daddy that his ear hurt. Ella and I went to pick Aidan up, and on the way I called to make him an appointment with the pediatrician. They so love us there, this week.

My dad came up to lend moral support for a few hours today, and thank God he did. We got Aidan home, made a plan for the rest of the day, and the phone rang again. It was the school nurse. With Jonah in her office. Complaining of a tummy ache. Again. After trying unsuccessfully to convince him to go back to class, the nurse and I agreed I would come and pick HIM up from school. I left Ella and Aidan with Papu and went to fetch Jonah. I told the school nurse I dared her to call me again with Sick Boy #3!

I brought Jonah home, picked Aidan up and brought him to his doctor's appointment. Aidan has huge Doctor Anxiety, so those visits are never fun, but he did great. And sure enough- sinus and ear infection. 

We went home, where Papu had made a wonderful dinner for us so that all I would have to do was pop it in the oven. Friends, family, teachers, and therapists have been emailing, texting, and calling all day to check on our munchkins and make sure we didn't need anything. I love when our circle of support gathers around us. It reassures me that I am not alone.

Papu left early in the afternoon, after making sure everyone felt loved and hugged. Then the real Crazy set in. Ella was feeling a little better in little spurts. But then she'd be exhausted after expending a little energy and need Mommy Hugs. Any time she got the slightest, tiniest boo boo, she'd get hysterical. When you have sensory issues, you're three, and you're very sick, even getting poked lightly with a pencil tip is extremely traumatic. 

Aidan started really getting sick this afternoon, despite having had his first dose of medicine. His fever increased to 101.3 and he just sort of whimpered all afternoon. He was a mess. He wanted Mommy Snuggles too, but Ella insisted that Aidan "smelled stinky" (her biggest insult- another sensory issue) and refused to share Mommy's lap. So we had to take turns with Mommy's lap. That worked pretty well even though Mommy's lap was getting a little tired.

Ben came home- the only boy to have made it through the school day. I went out to welcome him home, and remind him that he couldn't play until his homework was done. We've realized doing homework first alleviates a million problems for Ben later on in the evening. But Ben didn't come in the house.

Then I realized Jonah still had homework to do. He had a big fuss about doing it, as usual. I let him calm down while I went back outside to find Ben to tell him it was time to come in for his meds and homework. He said he'd be right in. Apparently "right in" in his mind is about 25 minutes. 

I finally got Jonah to the homework table, with his supplies, got his text book and opened it, found a pencil, and then I could see he was shutting down because of anxiety about how the homework was difficult. His tummy hurt, he was tired, he was dizzy, etc. I got him to focus and reminded him that his 504 Plan accommodations say that he can dictate long answers and I can write them for him. As he was looking over the first question, I put on my coat and shoes and stomped out to drag Ben in from playing with his friends. Operation Embarrassment Because You Didn't Listen To Mom was underway. Ben knew he was in the wrong so he came with me without any hassle. 

As Jonah was dictating his homework to me, Ella needed to sit on my lap. Then she had the pencil incident, where she poked her finger and cried for an eternity at the top of her lungs. Then poor, feverish, miserable Aidan weakly told me from the other room that he was starving so much he couldn't even figure out what to eat. But now he knew he needed Cheerios and a banana RIGHT now or he was just going to starve to death. So I ran and got him the required food. He was not looking good so I gave him more Tylenol. Then Ben and Jonah needed headphones to block out Ella's crying, so we found those. Then Ben decided he needed to read "People Magazine" while I helped Jonah with his homework, instead of trying to complete some homework himself. Then Ella had to go potty so I helped her with that. Then back to Jonah's homework. Then Aidan asked if I could please find him two Q-Tips because he needed to feel them in his ears RIGHT NOW. Then I remembered I had to turn on the oven to heat it up to make Papu's delicious dinner. Then Ella coughed and peed in her pants. So I had to run and get her new clothes. Then she decided she actually had to poop. While she was doing that, I rubbed Aidan's shoulder because it's been killing him all day and he was actually crying about it, it hurt so badly. Then I wiped Ella's butt and got her a popsicle so she would continue rehydrating. Then back to Jonah's homework. We finally finished his assignment, so then I got to work with Ben on his dictation of his homework. Then Aidan needed Gatorade. Then Ella needed a piece of paper to write on so she felt like she was doing homework with the big boys. Then I remembered to actually put the dinner in the oven. Then Ella needed more snuggles because she wasn't feeling well. Then I remembered Ella's Blankie needed to be put in the dryer or she wouldn't be able to fall asleep tonight. Then dinner smelled like it was burning because the meatloaf was overflowing, so I had to put tin foil under the pan to catch the drips. Then Aidan started crying because he felt so terrible and really needed a hug. Then Jonah came into the room, about to burst into tears because he was convinced that I had forgotten that he really wanted a haircut and a Frosty from Wendy's sometime today. I had not forgotten, I just had a COUPLE of other things going on.
Jonah, Mommy, and Ben being silly with sticky foamy stuff 2009
Finally, I just sat with Ella on my lap - while she screamed with some new pain, Ben with headphones on beside me, reading People instead of doing homework, Jonah on the other side of me with his headphones on, trying to find an answer to a question about the Titanic, and poor Aidan in the other room, with his vocal tics of pain and high fever and ear ache, and I laughed. I laughed my head off. I couldn't stop laughing. Jonah said "Mom, are you crying?" I said no! I'm just laughing, because sometimes when life is so crazy and hard, you just have to laugh. So we all started laughing. We laughed together until our sides hurt. Except for Aidan, who was really too worn out from being sick. He didn't think this crazy life was very funny at the moment. But boy, I did. I looked at us from the outside and thought about how absolutely insane my family is, and how I wouldn't trade it for anything because at this moment no one is in a hospital and no one is seriously ill and I'm not wracked with worry and tears aren't leaking out my eyes because of cold fear that my children will not be ok. Instead, tears were leaking out my eyes because of just how crazy my life is. This is not normal, right? This level of Crazy cannot be normal. But it's all I've got, so I'll take it.

Today I watched as my children comforted each other during moments of illness or sadness. At one point, Ella rubbed Aidan's legs while I rubbed his shoulder, so he would feel better. She gave him a kiss on his hot forehead to show she loved him. Jonah convinced Ella to stay with him and Papu while I took Aidan to the doctor today so that they could have fun and not worry about Aidan being sad at the doctor. Before bath time tonight, Ben heard Ella crying over some new boo boo and so he made "Ben's Confection Invention" for her. He brought her a bowl of ice cream. On the sides of the bowl were two flavors of Ella's favorite lollipops. Covering the ice cream were red sprinkles, jelly beans, and Twizzler pieces. And the piece de resistance- the whole beautiful thing was topped with a bright pink paper ball decoration on a toothpick that Ben had found in the cupboard. You should have seen Ella's pale little face light up at the sight of her brother's amazing creation. These children of mine know how to love. Even though we have an extremely high level of Crazy in this family, boy can we love. We love fiercely and with our whole beings. And that, if I can teach my children that, I think I will have taught them the most important thing in life.

Ben and Ella sharing snuggles and lunch last Fall
Here's to a less crazy night. Here's thanking the family and friends who love us. Here's to having all my sweet babies in their own beds upstairs, not wondering if we'll end up in a hospital tonight. Here's hoping Ella will sleep well and breathe easy, and Aidan's ear will start healing, and Jonah's dreams will drift him away from his anxiety. And here's hoping that Mama will get some rest so I can get up and do all the Crazy again tomorrow. I swear, if you don't laugh, you absolutely will go bonkers.

I told you it was a saga.

Tuesday, March 5, 2013

The Answer?

Here's my opinion: no one really knows anything, and there is no Answer.

I read a blog post recently on LivingLutheran.com under the "Ask A Pastor" section where a mother asked the question "Why?" The mom was asking why she has two Autistic children, why God has given her more than she feels she can handle. (First of all, I hear ya on that one!) The question was answered by several pastors, and the main point I got from them was that no one knows. The pastors wrote very eloquently and wisely about things like if you walk with God during your journey of parenting these special kids, it will give you strength. They agreed that it is not because the mother has done anything wrong, it is no one's fault that some children have special needs. I do agree with the pastors' answers, but I felt like there was no Answer to the mother's specific question. They did not say why God had specifically chosen this family to have Autistic kids, or what the answer is to the larger question of why difficult things happen to good people. The pastors didn't directly answer the mother's question of "why?" and although they had many wise things to say to aid the mother in her journey, some of them admitted that they didn't have the Answer because no one knows the Answer. 

I do believe strongly that if you have a spiritual connection, it will strengthen you during your walk through life in countless ways. But that doesn't address the question of why she has multiple kids with special needs, who worries that she really has more than she can handle, who questions why she is the one to have to deal with all these challenges.

So many times our family has been in crisis mode with our four special kids. When this happens, we ask for help from the team of professionals who support us. We reach out to family, and I try to remember to use my spirituality to give me strength. Everyone rallies behind us, with new ideas to try and new ways to find success. But no one really has the Answer to the question of how to make our family more successful and less challenging. No one knows why our family has to deal with so many challenges. No doctor or therapist or friend can tell me: 

"This is what you need to do to solve this problem for your child." 
"This is what you need to do to stop your child from having rages." 
"This is what you need to do to make your children more independent and not so frustrated, depressed, angry, and fidgety." 
"And this is why you are the chosen one who gets to live this particular life..."

Oh, people far and wide THINK they have the Answer, and many are more than happy to share it with you. Strangers you meet at Walgreens. People at the library or grocery store. Even well-meaning family and friends. But really, no one has the Answer. 

Truthfully, there is no Answer. There is no one-stop fix-all for every kid with a diagnosis. There is no reason I can find for why I have four kids with special needs while other families have no kids with special needs. There is no one Answer to the question of what will help a child. Every human is unique and different, and what works for my son probably will not work for a friend's son. 

One pastor from LivingLutheran.com wrote about how you can choose what your response to hardship is. You can change from asking "Why?" to instead asking "How will I respond to this challenge?" I thought this was a very helpful way to continue productively on the journey life has given you.

For some reason I have never been stuck in the "Why?" phase. Why do I have kids with special needs? I don't know, no one knows, I can't change it, so I figure I have to find a way to nurture and lead my kids into the best life they can possibly live. I don't know why I have never gotten stuck in the "Why?" phase, because I know so very very many parents who do ask that question and have every right to ask it. I don't like questions that there are no answers to, I guess. I'd rather focus on the things I can find answers to. I guess that's why I appreciated the pastor's answer to the mom on LivingLutheran.com who spoke about how you can choose the way you respond to the challenges you face, rather than ask "why me?"

I remember when Ben and Jonah were born almost 3 months prematurely, people I ran into everywhere would ask me if I was feeling guilty for having the boys that early, and if I knew that there was nothing I could have done to change their birth outcome. I thought this was absurd. I didn't feel guilty because there was not one single thing I did "wrong" during my entire pregnancy. I took the best care possible of myself and my babies since the day I found out I was pregnant. Their premature birth was something that happened to us, but it wasn't because of something I specifically did to them. Even our team of specialists couldn't find a reason for why the boys were born so early. Of course when people were telling me I shouldn't feel guilty for having preemies, I felt guilty for not feeling guilty. Crazy me.

My mom once told me the most profoundly amazing thing that I have ever heard, and it completely changed the way I look at my children. She said "There are no mistakes. No accidents. Each of your children are who they are meant to be, and God didn't make a mistake when He created them." Whoa. I never thought about it like that before. It has helped me to accept my kids for who they are, challenges and quirks and all. 

Sometimes I think there just aren't any Answers. Which is really just stupid, in my opinion, but that's the way it is. No one knows why the mom from the blog has two Autistic kids. No one knows why I have four preemies. No one knows why you so often feel you have more than you can handle when you're parenting special needs kids. 

I wish there was a black and white, obvious Answer to "Why?" because maybe it would help parents move out of the Stuck that they're in and move forward in acceptance of the life they're living. But I don't think anyone has the Answer. It just is. I just have four kids with special needs. The mom from LivingLutheran.com just has two Autistic kids. Sometimes it really stinks and it's really hard and you feel like you just can't handle it all. But other times you find incredible joy and hope and fulfillment from parenting special kids. Sometimes it's tough to see the joy, but I just try to keep focusing on how I will handle each obstacle, not on why I have been given the life I have. There is great joy in my life with special kids. Even though there isn't an Answer. 

As a side note, I think that LivingLutheran.com should have a section entitled "Ask Carrie's Mom." Think of all the parents she could help with her life-changing wisdom. As I have been writing this, Jonah asked what I was writing about. I told him the basic overview, and he said he thinks God made the mom's kids from the LivingLutheran.com question the way they were supposed to be. "That's just the way they're supposed to be and it's ok," he said with all his 10-year-old Old Soul Wisdom. I told him I agree. Maybe LivingLutheran.com needs a section for "Ask Carrie's Mom and Jonah."