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Saturday, December 1, 2012

Aidan's Birthday

Last week we celebrated Thanksgiving and Aidan's birthday a couple days later. I can't believe Aidan is seven years old now. In a way I feel like he should be much older, but then again it's hard to believe that seven years ago our little boy was born so helpless and fragile. He's come so far and filled our life with such immense joy and wonder.

I wasn't prepared for Aidan's birthday because we had just gotten back from a great Thanksgiving couple of days at Grandma's house a couple hours away. We had been spoiled, fed way too many delicious treats, and had a ton of fun. I was in the midst of piles of laundry when I realized I had better get my butt in gear for Aidan's big day. The morning of his birthday, I still had presents to wrap, streamers to hang, sloppy joes to get ready, donuts to pick up and deliver to Aidan's class, and a cake to bake. No problem. If you have 37 hours in a day and a babysitter for Ella.

I'm proud to say I did get it all done. And as I was running around like a maniac, the design for Aidan's cake came to me. Captain America's shield. Perfect. It's round, which the cake in the oven already was also, and I had all the colors of frosting I needed already in the pantry. 

It turned out so cute. The boys were totally thrilled at my rendition of the shield. I love how they are completely in awe of my attempts at things like birthday cakes, which never look like a store-bought masterpiece, but are fun anyway. In fact, before Jonah saw what the cake was decorated with, he informed me that the cake was a little lopsided. Yes. That's because it's made with a whole lot of love and the love was heavier on one side, I said. Then he saw the top of the cake with the shield on it and forgot about the heavier side of love.



Ella was in charge of streamers. We had to use pink that ones that were left over from Ella's birthday, because I didn't have time to buy red ones which is Aidan's favorite color. Ella hung them along the whole back of our bench that sits at the table, and all the chairs. Methodically and proudly, she taped each little piece beside the next until every surface of sitting area was covered. She couldn't wait to show Aidan. She kept saying to herself "Me think Aidan will REALLY love this!" And of course he did. She showed him her hard work when he came in from the bus and he gave many ooo's and ahhh's to all of Ella's hard work. He's a great big brother. 

We had sloppy joes in honor of Aidan for dinner- that's Aidan's favorite thing to eat, under cereal, ice cream, and pizza. Then we had to deal with a big brother who had a super long meltdown about homework, but finally we reconvened to light candles and sing "Happy Birthday" to our 7-year-old. The meltdown was forgotten for a few minutes, the tears were dried, and we shared some special time with Aidan as we ate our Captain America cake. I kept taking pictures of Aidan until he gave me a look and I asked him if he wanted me to stop. He was too tired to talk but just nodded his head with his Aidan Look on his face that says "Mom, really. Just knock it off. You're such a Mom."

Even if we have to deal with meltdowns and tears and plans going off-course, when it's one of our birthdays we all realize that is a special moment to love our Birthday Person. The kids all seem to feel a change in the very air of our house on a birthday. They are especially kind and loving to the Birthday Person, and everyone is excited about what the presents will be, what Mommy's lopsided cake will be decorated with, what color of streamers will be hung up. It's such an important moment to stop and give thanks that the Birthday Person was born. And in our case, the moment is filled with extra thanks for how far the Birthday Kid has come in his/her life since they all had such rough starts in the world. 

It's exciting to see your children unfold and blossom before your eyes. To see what they will become, what they will like, what will make them laugh, who they will choose as friends. I'm thankful for so many things, but most of all my kiddos. They have made me a different person, and although life is not easy most days, for that I am grateful. 

I am thankful for Aidan, with his spiky blond hair and soulful hazel eyes (That he used to wish were blue like Daddy, Ella, Jonah, and Ben's. Instead he got Mama's eyes. Which he is becoming more proud of now.). I am thankful for his spirit of sunshine and joy. For the way he can figure out any electronic device in four minutes or less. For the way he is becoming such an artist. For the way he still loves to bake with me. For the way he loves his brothers and sister. For his sleepy hugs as I carry him to bed. For his insight into spirituality. For his giggle. For so many things. 






Friday, November 30, 2012

TMI

I had to have my first baseline mammogram last week. Which totally freaked me out because:
1. I'm so old that I need a mammogram. 
2. If I have a mammogram they might find cancer. 
3. There is no way I can handle cancer on top of all my kids' issues right now.

I made the appointment at a time when Alex said he'd be able to get off of work and meet me, then take the kids so I didn't have to bring them with me to the appointment. We had it all worked out. So I picked the kids up from school and we zipped over to the appointment. On the way, one of the boys asked where we were going. I said I had a doctor's appointment. They asked what it was for. I decided to have a teachable moment with them and be honest. I explained that I had to have a mammogram, which meant that a doctor would look at my breasts and make sure they were healthy. I knew that by telling especially my 10-year-old trouble-makers this information that somehow it would come back to bite me in the tush. But this procedure is part of life, so I decided to give them information.

We got to the doctor's office and I texted Alex to see if he was going to be there soon to get the kids. He answered that yes, he was just about to leave work. So we went in to the office to get the preliminary doctor-y stuff done. The waiting room was small, and my rambunctious kids filled it with life and noise. The technician called my name just as I got a text from Alex saying he was stuck at work dealing with an emergency. Great. I gave the kids strict orders to stay exactly where they were and be as quiet as possible and not make trouble and not to fight. They agreed through their giggles. Trouble.

It was my first mammogram and I was nervous, so nervous, not about the procedure (after having 4 kids and 3 emergency C-sections nothing phases me) but about what the results might show. So the technician poked and prodded and rearranged, took her pictures, and chatted while I listened with dread to the growing volume of chatter and laughter in the waiting room.

The technician decided she had all the pictures she needed, and I was finally free to put on deodorant and leave. I got dressed and walked out to the waiting room where my three-year-old jumped up as she saw me and exclaimed exuberantly (and at the top of her voice) "Mama! Are your boobs ok??"

Picture me dying of embarrassment. In those moments all you can do is laugh and carry on. I assured my daughter that yes, my boobs are in fact fine, thank you very much. Then I turned my Mommy Glare at her big brothers, who I was certain had put her up to that. Big brothers. Trouble, I tell ya. The boys hooted and laughed hysterically until they were practically rolling on the floor. I'm glad they got such a kick out of mortifying their mother. I'm glad I can amuse them so. They knew I would think it was funny anyway. They know me so well, those crazy kids. Looking at my crazy, laughing kids after thinking about what my mammogram results might hold made me realize how lucky I am to have them, and how I hope I never take a moment with them for granted. Life is so fragile and short, you never know what might change or when. All you can do is try to cherish it all. And maybe rethink some of those teachable moments.

Weekly stats

In the past five days:

3- the number of days I have had a sick kid home from school

4- the number of doctor's appointments I've been to with kids

4- the number of nights I have slept on Ella's floor because there's no other way she will sleep right now. Not even in our bed.

12- therapies the kids have completed

16- the number of socks Benjamin wore to bed last night 

7 bazillion- the number of times I have heard one of my angels scream "MOMMY!!!" 

0- the number of minutes I have had to myself to do anything at all this week


All I have to say is I am so grateful to the individual who invented under-eye concealer. 




Santa and Adenoids

Jonah is having a few medical issues that have been bothering him for many months. He has recurrent strep throat and is constantly sick with one virus or another. He snores, and breathes through his mouth all of the time, which causes his lips to be raw. His tonsils are huge and he's always stuffy. He has intestinal and tummy issues multiple times every day. Taking him off dairy, changing his multivitamin and pumping him full of probiotics didn't change anything. So we decided enough was enough. This was a week of doctor's appointments for our guy.

He saw the allergist, who ruled out allergies. In fact, he may not even be allergic to peanuts anymore! We'll get a blood test to definitively figure that out. The allergist recommended seeing our ENT to rule out reflux. I already had an appointment with the ENT for Jonah's tonsil issue. We saw our ENT, who has taken care of us since the boys were in the NICU 10 years ago. He looked at Jonah's tonsils and adenoids were quite enlarged, and given his mouth breathing and snoring, should be removed. He stuck a camera down Jonah's nose and said there was no evidence of reflux, so that was good. 

The next day we saw our pediatric gastroenterologist, who made baby Ella's life a much more comfortable place to be when she had severe reflux three years ago. (Luckily, we have connections to any kind of doctor we'd ever need, it seems!) She examined Jonah, asked questions, and ordered a million tests. We went over to the hospital to get an X-ray of Jonah's abdomen and blood tests. He also has to do three days worth of poop tests. Fun for Mama, that's for sure. 

Today the GI doctor called and the X-ray results were in. They found that Jonah is full of air. The Newsoms have been known to be full of hot air, but not just room temperature air.  (ha ha) Poor Jonah has a tummy full of air and a small intestine full of air. Air is an irritant that can cause discomfort. The doctor said she thinks Jonah is swallowing all that air! So we're supposed to observe him while we wait for all the other results to come in, and watch for him gulping his food (which he does every single time he eats or drinks), or the doctor said kids who have anxiety like Jonah sometimes sigh and then swallow air. We'll see what the other tests show, but Jonah may need to see a special speech therapist who works with kids on how not to swallow air. Who knew there was such a thing!

Jonah was petrified at the hospital throughout the testing. He'd never had an X-ray before and was just terrified, no matter what I told him. Then the blood test made him cry even more. Poor kid. It was an exhausting day for both of us.

The funny thing is that even when you're going through such exhausting, confusing, worrying times, there are still such funny, interesting things that life brings your way. On the way to the ENT appointment, Ella and Jonah were sitting in the back seat of the van chatting with me. Out of the blue, Jonah asks if there's really a Santa. Now he has asked me this multiple times over the past couple months, and when that happens I know he's really mulling something over and really is searching for the truth. Before that day, I would turn the question back to Jonah as all good social workers learn to do: What do you think, Jonah? Do you believe there is a Santa? 

I never told him there was for sure a Santa, but I didn't tell him there wasn't either because I wasn't sure he really wanted to know that truth. It felt like the end of a childhood era to tell my oldest son that the magic of Santa isn't quite as real as we believed it was in younger years. I never wanted to tell my kids there was a Santa, because when I found out the tooth fairy wasn't real as a kid, I was FURIOUS with my parents for LYING to me and told them they should NEVER lie to my little brother the way they had lied to me. I was devastated. We didn't really do the Santa thing because our childhood was so different in Africa. But apparently the tooth fairy could find her way across the ocean to our little village even though Santa couldn't.

After Jonah asked if Santa was real in the car, I was quiet for a few long moments, trying to decide what to do. Which path to take my son on. Should I let him grow up a little in that moment and know the truth or try to make him fit in the box of being my little boy who I don't want to grow up too fast. So picture this: Jonah says "Mom, is there really a Santa?" Silence. Silence. Then Ella says "NO." (!!) What?!? I chuckled. She had no idea what she was talking about, but she broke the ice for us. I told Jonah that no, there is not a real Santa. He shouted "I KNEW IT!" I told him that Santa is a story of magic and hope and kindness that parents tell their kids to make Christmas even more mystical and exciting than it already is, since we also are celebrating the birth of baby Jesus at that time, and that is a very important and special part of what we believe. I explained that the Santa story is sort of a dream or an idea of great generosity that we want our family to be part of all year, and especially at Christmas. That's why we choose tags off the Christmas tree at church that tell us which foster children we can buy presents for.  It's why we donate food and money to the local food bank during the winter. It's why we have made cookies for our neighbors and delivered them in Santa hats. 

I was worried about what Jonah's reaction would be. He is such a wise soul, I should have known he would have taken all this in stride. We talked about how his younger brother and sister still believe in Santa, and I asked him if he would mind not telling them about this talk so that they can keep believing in Santa until they are ready to know the truth. Jonah agreed he wouldn't tell his siblings what I had told him. After a while he was quiet, and then he said in true Jonah fashion, "Mom. Thanks for telling me the truth." That kid. Such a wise, old soul. I just want to hug him forever. He wasn't devastated or upset that Daddy and I had told some tall tales about a guy in a red suit. He understood. 

So it's the end of an era at our house this holiday season. Our oldest boy knows the truth about Santa. I knew this day would come, but didn't expect it on the drive to find out if Jonah needs his tonsils and adenoids out. Even in the midst of medical conundrums, Jonah reminded me not to forget that my kids are still just kids. I shouldn't let my anxiety about all the medical issues we're facing right now overtake the fact that my kids are beautiful, thoughtful, rich souls who are just enjoying being kids. They're just trying to figure out the world, and their place in it. My Jonah makes me smile with his beautiful, joyful, open spirit.

Wednesday, November 28, 2012

Hearts, chapter 2

So much has happened in the past two weeks, it's hard to know where to begin! We had our big annual heart checkup for Ella and Benjamin. Ben was so thrilled to show Ella the ropes of the cardio appointment. Such a good big brother. They both had echocardiograms to see the current status of their little pumpers. Then we moved on to chat with a resident and have him listen to the kids' hearts. Then we got to see our cardiologist who we have known since Ben was born- 10 years ago. Dr. Dubrow first diagnosed Ben's heart defect all those years ago, and we've been seeing him ever since. I love Dr. Dubrow. He is a grandpa-type doctor, who is insanely smart, you can just tell, and yet never ever makes me feel like a neurotic mom. He respects and values my input and makes me feel like I am just as important as he is. Which is true, but hard to remember when you're intimidated by the hospital, the tests, the medical jargon, what the results might be...so I am truly grateful for Dr. Dubrow.

The doctor said that Ella is pretty much fine, and we shouldn't be too concerned right now about her heart palpitations. He said it's like how you don't think about your breathing until you have hiccups, then your breathing is on your mind until the hiccups go away. Ella sort of has hiccups of the heart, and if they don't come too rapidly after each other, it's not too concerning.

Then we got to Ben's echo results. The doctor said he saw something in the results that had him a little concerned because it was a change from last year's checkup. So we needed to do an ultrasound of his heart to see what had specifically changed. Ben and Ella were so good through this whole process of waiting and testing. So cooperative and calm. Ben has been doing this for 10 years, so I guess he's used to it. I had flashbacks during his tests though, of years ago having to hold a screaming baby in my arms while the doctors told me to just get him to stay still long enough to have the test done! Yeah right. You try quieting a screaming, cold, scared, hungry, diaper-on-only baby Ben. Times have definitely changed. Ben lay so cooperatively during his ultrasound while I smelled the smells that reminded me of his premature birth in that very hospital, and listened to the sounds that brought me back to Ben's younger years.

After the ultrasound, Dr. Dubrow said there had been a very small change in Ben's aorta. He said everything was ok, no emergency, and in the next few years we would just need an MRI to get a very clear picture of how his heart was doing. For some reason, all day I had felt like something had changed with Ben's heart, and we were at the crossroads between needing to intervene and watching it another year. But I listened to Dr. Dubrow tell me that all was ok right now and tried to believe him. 

We left cardiology and visited the NICU where Ben and Jonah were born so many weeks early. We ran into two nurses who helped our boys when they were living there for two months. So many memories.

On the long way home from the hospital, I quietly cried my annual-heart-checkup-tears-of-gratitude for the tiny hearts beating in the back seat. And I tried to shake the feeling that Ben's heart wasn't ok. 

When I got home there was a message from Dr. Dubrow. After looking at Ben's ultrasound more closely, he needed to talk to me right away, but it wasn't an emergency. My heart sank. With dread, I called the doctor. After looking at Ben's test results, he realized there had been a change in Ben's aorta that we need to check sooner rather than later. The doctor didn't want to wait years to have Ben have an MRI, instead he would recommend it in the near future. Dr. Dubrow has known me for 10 years. He probably knew I wasn't going to mess around with waiting a few months to check out Ben's aorta. Nope. We're doing this as soon as possible, mister. The doctor agreed this was a good idea. He explained what might happen if Ben has a cardiac emergency, that basically his aorta is elongated and can tear or rip or have an aneurism. Fun stuff. He also said he has never seen an aneurism happen in children with Ben's diagnosis, although it does happen in adults. Either way, we're getting that MRI ASAP. 

Today I'm playing phone tag with the cardiac MRI scheduler. Dr. Dubrow said it's tough to get in at the end of the year, but that he'll make sure we're seen. We also went over Ben's activity limitations. He can't do anything that requires extended effort, like the rings at gymnastics. I emailed Ben's teacher, the school nurse, and the gym teacher and explained what is going on. It's scary to have to write to your school and tell them what a cardiac emergency for Ben would look like, what they need to watch for, and what limitations he has. The school is always fantastic about handling our special kids, and they didn't disappoint me this time either. It just sort of made it all real to me, to have to write that email. I said to Alex, we deal with so many other challenges with Ben- behavior issues, ADHD issues, emotional issues, etc, so it's really weird to think that his heart is actually the most critical piece of him that needs immediate attention. 

We don't know what the results will show. We may be in a holding pattern, waiting and watching, for another year. Who knows. But I'll be happier when we have the results in hand. I can't see Ben's heart, I don't know if it changes, and I can't do anything about that. That really pisses me off. All of Ben's other issues I work really hard to try and help him change. We do all those therapies so that Ben will be able to be the best him he can be. But I can't do a therapy for his heart, I can't give him medicine to fix it, I can't even see it. Frustrating. Makes you feel pretty helpless as a parent.

Luckily, our Ben is a spitfire. I'm convinced that's how he survived his premature birth, how he has grown from weighing 2 lbs 2 oz, why he was able to get off the ventilator after only ten minutes. I'm convinced that's how he has overcome all the challenges he has faced. Physical and emotional. The kid's a natural fighter. And I know his incredibly brave, resilient little spirit will fight through this heart thing too. We'll just deal with it all one step at a time. Right now the step is to get a hold of the scheduler. One thing at a time. 

Thursday, November 8, 2012

Hearts

This week has been a whirlwind for our family. I feel like I can't stay on top of the things that are hurtling my way! On Monday, Ella had to begin her 24 hour portable EKG monitoring to see how her heart is beating. Last year at a regular exam, we realized she has an irregular heartbeat, so now we have to monitor it every year. 

We went to the hospital, where the nurse attached five electrodes to Ella's little chest that were hooked up to huge wires, which was hooked up to a monitor. On petite little Ella, the whole thing looked like a monstrosity. The nurse rubber-banded the whole lump of cords and machines together, attached a strap to go around Ella's neck to hold it in place (that was too big so didn't hold anything securely at all), and then we tried to tuck the whole blob under Ella's shirt. Hoping she, and the world, wouldn't pay too much attention to it all. 

Wrong.

Ella was distraught for almost the whole 24 hours about the Mechanical Blob that was attached to her. She spent the day holding the monitor with one hand while playing sadly with the other. She had to sleep on her back, which is not how a tummy-sleeper feels most comfortable. On Tuesday, she had to go to preschool. I had her wear one shirt that covered the Mechanical Blob and tucked the shirt into her jeans, hoping it would alleviate Ella's need to hold the monitor with one hand. Then she wore another shirt over the first one to just cover everything better. 

Right away when we walked in the door to school, one of Ella's friends asked her mom what was in Ella's tummy. I explained that it was a little computer that listened to Ella's heart beat. And wasn't that so cool? (Yeah, right.) I had left Ella's teacher a message that morning before school to let her know what was going on. When we walked in the door to her classroom, I saw that Ella's teacher was out sick that day. In my humble opinion, we should provide teachers with bubbles to live in during the school year so they are NEVER sick so they can ALWAYS be at school so my children's routine is NEVER interrupted. (Yeah, right.)

Luckily Ella's assistant teacher was at school, just like every other day, so we touched base about Ella's Mechanical Blob. When I picked Ella up from school, she was in the teacher's arms, sobbing. And wearing a coat that wasn't hers. The teacher asked if that was Ella's coat. I said no, but it looked a lot like hers! Brown and soft with white fuzzies on the inside. It turns out there was some disagreement between Ella and the other Ella in her class about whose coat was whose. This totally cracks me up. The Ella's apparently debated about the coats, and the teacher said that once the other Ella had put on my Ella's coat, she refused to take it off and was adamant that it was her coat. This, of course, broke my Ella's tender little heart. She can't stand it when a wrong has been done, especially to her. 

We got the coat fiasco straightened out and all the Ella's went home with their own coats. But my Ella just wouldn't stop crying. I finally asked her, as I forehead-hugged her in her car seat, if she had been hurt. She said no. I asked if she was still sad about the coat fiasco. No. I asked if she had just missed me. And yes, oh yes, that was the right question. She burst into fresh tears and wept with new gusto. I felt my heart crack into shreds of pieces. Poor little girl. I hugged her some more, and we went home to snuggle away the stresses of a three-year-old's day.

Later that day we were able to take off the stickies from the Mechanical Blob and return Ella's chest and tummy to their normal size. Getting five electrodes off a toddler's chest that have apparently been adhered to the skin with Gorilla Glue was not easy, and now Ella has a rash from it. But we got the monitor turned back into the doctor and now we wait for results. 

In a week and a half, Ben and Ella will make the trek to the hospital to meet with our pediatric cardiologist. Ben does this every year because of his aortic stenosis, and he is beyond ecstatic that he gets to bring his little sister this year to be checked too. He's thrilled. He keeps telling her all about the details of the visit. He can't wait to show Ella around. As long as Ella has Ben there with her, I'm sure she will feel more brave. And this year, I will take the two of them to the cardiologist. 

For the past few years, I've made Alex take Ben because I just can't handle the raw, all-consuming fear that comes with this appointment. I can handle so very many other scary things where my kids are concerned, but Ben's heart is so fragile and so important, I can't bear it if the cardiologist has to tell me some year that we have to do something to fix Ben's heart. I don't think I could survive. Somehow I imagine when that year does come that it would be easier to hear the news from Alex. He'll know how to tell me the horrible news while wrapping it in bubble wrap so it doesn't rip me apart quite so much.

But this year, I'm going. Because Ella is so little. And because she's Ella. I have to be there. To soak in the news, the status of her and Ben's hearts, to hear the prognoses, to know what our plan is for the next months. 

So we wait. Wait for the news. Wait for the appointment. In the meantime, life keeps trying to run me over! Ben was home sick today. Aidan must be fighting the virus our family has been passing around because he has been pesky and tired lately. Jonah is having major anxiety about school and homework, and unless I challenge his behavior directly, would spend the whole homework time sniffling and trying to produce tears. Aidan has been complaining of not being able to see well, so there's a trip to the eye doctor in our near future. Ben and Jonah have book reports due at school in exactly one week, and haven't even finished reading their books. Aidan's teacher agrees that we need to have another meeting to see how to best help him succeed at school, because he's really struggling with his ADHD. Ben has a cyst that needs an ultrasound so we have an exact measurement of it. Ella needs to have her yearly hip check to make sure she doesn't have anything funky happening with her growth and development. Aidan needs to see the allergist to eat peanut butter with her. His blood test and skin test came back negative for peanut allergy, despite the fact he was allergic previously. So he has to go to the allergist's office, armed with a load of peanut butter, that he will ingest in tiny increments to see if he goes into anaphylactic shock. Sounds fun, right?

And. Ella has started having separation anxiety. She normally is so proud of being independent and doing things by herself, without Mommy, but this week she has needed Mommy. At her therapy group yesterday, she wouldn't go without me, and couldn't stop crying when I tried to leave. So our incredible therapists let me come to the group with Ella. Today at school, the teachers (who are both healthy again, thank goodness!) had to peel Ella off me, crying, when it was time for me to drop her off. But, at gymnastics this afternoon, she was her normal self. Happy, independent, trying so hard to be courageous on all those big pieces of gymnastic equipment. So hopefully the Crying Funk is over. Hopefully she'll sleep well tonight, without needing Mommy on the cold, hard floor next to her. Hopefully the next couple days will restore Ella to her normal joyful self.

Maybe I should look at "life trying to run me over" as "life trying to distract me from the raw fear of heart checkups that are coming up." Maybe I should be more grateful that I don't have time to sit around and worry about what might be. Because my worst fears probably won't be actual reality. At least not this year, hopefully. 

So I'm trying to take deep, slow breaths when I feel the fear, or like I'm being run over by life. I try to not let my chest squeeze with stress or fear, because the last thing I need is to have to go to the cardiologist myself! We have enough heart issues for one family. We'll just wait and see. 


Thursday, November 1, 2012

Some Day

I don't know what we would do without our amazing therapists at The Therapy Tree. Our four kids have been in therapy for years and years. So very many days in the past 10 years of pediatric therapies, I have wondered when will all this work pay off? When will things get better, or even just a little bit easier? When will we be able to do things normal families do without it being a total disaster? When will the rages stop? When will we be able to wear socks and brush teeth without having a meltdown? When will we be able to handle transitions better? When will our Some Day come?

The answer is: Here and there, there are bits of progress all around our family if we pay attention.

Ella has been in PT for several months and can now run like a typically developing toddler. Her torso isn't frozen anymore and her arms can swing like they're supposed to. She can twist and twirl and turn like the little ballerina she believes she is. Her physical therapist taught her how to push a swing. That's something I never thought to teach her, and it involves a lot of sequencing, planning, and skill. You have to lean back on one leg, with the other leg in front, push the swing with your arms and let go with your hands while moving your torso forwards, then make sure you're far enough back so that you don't get knocked over when the swing makes its way back to you...that's a lot for a toddler! Ella's PT said she could tell it was something Ella wanted to learn, because she wanted to push a huge teddy bear in the PT swing, so she taught Ella. Hm! Wish I had thought of that. That's why I pay the PT the big bucks I guess.

I am brushing Ella again, which is something her PT recommended. The brushing is helping her sleep better at night again, after months of interrupted nights. Ella's OT is helping her learn to hold a pencil. She is learning to try things, even if she thinks she won't be successful at them. Her Speech Pathologist is helping Ella remember when to use "I" or "me" and now we're working on 'blends', which is something I didn't even know about until 2 weeks ago. Ella can't say an 's' sound with another consonant sound if it's in the beginning of the word. So "school" is pronounced "cool", "spooky" is "pooky", and "Spongebob" is "pongebob." Funny and cute, but also incorrect. We're working on sensory things, eating issues, social skills. 

Aidan made it through Halloween yesterday (major SPD nightmare of a holiday). He got his costume on by himself at school for the class party. He came home pretty tuckered out, but finally focused enough to put his costume back on. Captain America was ready to head out into the Candy Wonderland with his brothers when he informed me he was hungry. So Captain America sat down to his favorite food- a bowl of cereal. Then he told me that he did not, after all, want to go trick or treating. *sigh* Saw this coming. I told him he'd be fine and he had to go out for a couple minutes, and then we could see how he felt. If he had made a big stink about it I would have let him stay home, but he decided that idea sounded good.

Aidan is working in Speech on all kinds of processing issues as well as speech issues. He works hard in OT to deal with so many sensory issues. Tomorrow he starts a group that is run by his amazing OT that will address social skills, handwriting, OCD and frustration. Our therapy clinic is one-stop shopping for our family, and they make it as easy as possible to get multiple kids the multiple therapies they need. 

Here's some Jonah Progress. He has less anxiety. Less school anxiety, less overall anxiety, because of counseling. He is less depressed. He still works really hard in PT because his muscles are very tight and a little bit weak, and that makes it hard to do some things like other kids do. He came home from school the other day and told me that in gym class they had had a running test. They had to run a certain number of laps to see how fit they were. The best they could do was 51 laps. Jonah did 15. He was completely distraught. He said he was categorized in the "unfit" zone, and was devastated. I explained to him how when he was lying in his incubator with tubes all over his body 10 years ago, I didn't know if he would ever walk. I didn't know if he would have to use a wheelchair, or need braces on his legs, or if he would ever run or ride a bike. I told him I am so grateful and happy that he can walk, it really doesn't matter how many laps he can do in gym class. I also explained that this is why he goes to PT every single week. His muscles need a little help to learn how to work the best they can, and his Physical Therapist helps him with that. 

As I talked with Jonah about how far he has come since his premature birth, his face started glowing. A smile broke out, slowly, and then spread from ear to ear. He looked at me gratefully and said "It really doesn't matter if I can't run 51 laps?" I said no! All that matters is that you tried your best, and that you can walk and run and play like you want to. This is progress.

Benjamin. Fiesty, fragile Benjamin. He has had the most challenging issues, and sometimes I've felt so hopelessly lost when it comes to trying to help him. I just keep putting one foot in front of the other and march on, trying to find ways to make Ben's life easier and happier for him. This past week, I saw evidence that all his hard work is paying off. All my hard work, all our therapists' hard work, but mostly Ben's hard work. 

I got home from therapy with Aidan after Daddy and the other kids were already home from their therapies on Wednesday. The house was in a state of complete chaos. The kids weren't listening to Alex. Homework wasn't started.  Dinner wasn't ready and the kids were hungry. And worst of all, Ben was halfway into a rage. What started it all doesn't matter, it was a small issue but to Ben, it was devastating. I tried to glean what was happening very quickly, like an EMT trying to assess an emergency situation. That's how I always feel: what is going on in this situation that is making my son so upset, what or who could be hurt, what objects are in his path that could be destroyed, how can I help him calm down as fast as possible? 

I was doing my usual method of calming Ben down, working through the problem like untangling a knot, a little bit at a time. My methods weren't working and Ben got angrier. He took his medicine that was waiting for him by his dinner plate and started to unscrew the two parts of the capsule to pour the medicine dust all over the table. All this while still raging verbally and emotionally.

That was it. I wan't going to be Nice, Untangle the Knot of Rage Gently Mommy. I had to go into Firm, Get the Job Done and Control the Situation Mommy. I took Ben firmly around the shoulders and started to lift him from his chair to his legs to take him upstairs to his room for time away from the rest of the family, so he could calm down. Something in him clicked. As I held onto his shoulders and firmly told him he needed to go upstairs right now, he stopped screaming and went limp to the floor. He cried "I'm sorry, Mommy. I need help to calm down. I can't calm down. Please help me calm down. I don't want to do this anymore." 

This is the first time in 10 long years that my little boy has ever ever stopped mid-rage and asked for help from me, and then continued to calm down. This past year, he has asked for help to calm down after the anger part is over, when he is sad and remorseful, but never in the very middle of the anger. I was stunned. And so. Very. Very. Proud of him.

We went to the couch together and I held Ben while he cried and worked through his sadness and disappointment. But there wasn't any more anger in him. I couldn't believe it.

One other night this week, I was helping Ben with homework and he was getting upset and very sassy. He said something rude and sassy to me, and then just stopped cold. He looked at me and said "I'm sorry, Mom. I didn't mean to say that that way. Sorry." 

Ok, who is this boy?? 

Progress. Huge progress. It comes when you're least expecting it, when you're not looking for it. It sneaks up on you and blows you away with its magnificence.

Tonight Ben was very upset about not being able to go to some birthday parties his friends are having over the next couple weeks. We're talking on the floor-weeping-"you've ruined my life" kind of upset. But he didn't get angry. Usually any negative emotion Ben feels, he reacts with anger. If he's sad, he acts angry. If he's disappointed, he acts angry. Tonight, Ben was just sad. Heartbroken. 

Here's what Ben does when he is desperate for help from Daddy or me but just can't verbally ask for it. He goes to our art table. He writes a note that tells us he is so very sad. (sad face included) And that he needs Mommy to come upstairs with him to give him some "loving care." No one else can come. Just Mom. 

Then he sends his sad letter in to us on a paper airplane and leaves the room. 

So how insanely smart and creative is my kid? (I know- I'm biased.) He knows he needs help. He knows he can't trust himself to actually ask for it because he might let anger come out when he really just feels sad. He knows he wants just Mom, no brothers or sister, because that would probably irritate him in the mood he's in, and he wants to protect his siblings from that. Smart and creative. My boy. 

I went upstairs to give Ben his "loving care." There was still no anger! Just big, fat tears rolling down his sweet, freckled, perfect cheeks. Just pure sadness. 

Which makes me grateful. Not that Ben felt sad, but that he had the ability today to feel sadness without turning it into anger. We have been working on this for YEARS. Years. And today I saw it just click in him. Incredible. I feel like I'm witnessing something as awe-inspiring as the first man walking on the moon. I am witnessing my son changing and growing, after so much sweat, tears, worry, therapy, frustration, interventions...I'm so very grateful for progress. Even if the progress doesn't stick around for tomorrow, or next week, I know it's in there, in Ben. I know that little by little, Ben is making progress. That's all that's important.

Just as an aside, Ella did follow Ben and me upstairs tonight after a few minutes. She came into Ben's room and sat on the other side of him on the floor, so she was on one side and I was on the other. As Ben cried, I rubbed Ben's back, and Ella's tiny hand rubbed Ben's back with mine. He leaned into us and let his tears roll and we told him we love him and we understand. I'm always in awe of my children's compassion for each other.

My kids. I don't know how I got so blessed to have these four kids. 

There are little bits of progress all around me, in each of my four precious munchkins. Sometimes I have to dig to find glimmers of progress, and sometimes it hits me over the head with its hugeness. If I had known throughout the past 10 years that Some Day, some time, things would start to be a little more ok, it would have helped me get through the darkest moments of hopelessness. I hoped like no one has ever hoped before, with every cell in my body and fiber of my being, that Some Day would come. That we would start to see positive changes. But I didn't know for sure Some Day would ever arrive. I live in hope. One foot in front of the other. On the road to Some Day.



Wednesday, October 24, 2012

Snippets of Quirky

As Fall has started, the kids have needed to wear sweatshirts or light jackets to school in the morning. Ben has run out of sweatshirts at home, because he forgets them every day at school. He has borrowed Jonah's. And forgotten Jonah's. I finally told Ben this week that he was wearing the very last size 10 sweatshirt in the house, and if he wanted to stay warm at the bus stop in the mornings, he needed to bring his collection of sweatshirts home from school.

He just got off the bus carrying an armful of EIGHT sweatshirts. Which is a lot when you're a skinny little guy like Ben. He could hardly see over his load of cotton. It was so funny, I stood on the porch and laughed so hard I'm sure the whole neighborhood heard me. I hadn't realized how many sweatshirts  Ben had been keeping at school, and to see him tottering up the driveway carrying them all was more than my funny bone could bear.

As Aidan ate his after-school-cookie that he had requested I bake today, he started talking about nicknames. He asked about each of our family members, and whether they have "real" nicknames or not. Like "Ben" is a real nickname for "Benjamin." Most of us do not have real nicknames, we decided. Then Aidan asked about God. Does God have nicknames? I said well, what do you think? Can you think of any other names for God? We thought of lots of names that God is called, and Aidan's face lit up as he said "God has a LOT of nicknames!" For some reason, Aidan brings God and/or Michael Jackson into most important conversations. Ever since Michael Jackson's death, Aidan has let us know at every opportunity how he will see Michael when he goes to Heaven. How he loves Michael Jackson. How he can dance like Michael Jackson. How he's sure Michael Jackson liked certain things that Aidan likes. And Aidan's only 6, so he didn't know of Michael Jackson very long before his death, so I'm not sure what the fascination is.

Aidan is a funny kid. You sometimes think not much is going on in his very bright mind because he seems a little disengaged. Then he'll ask you something like "Mommy, does our conscience make us think thoughts?" Hm. Not sure about that. Maybe you can ask Michael Jackson when you get to Heaven.

You'll be driving along, lost in your own thoughts, and Aidan will strike up a conversation about God. "God is everywhere" he will declare. "God knows what we think about." "God is my best friend." "Where does God live?" "Where is Heaven?" "Is Michael Jackson for sure in Heaven with God?"

We are a religious family, but Aidan comes up with questions that he thinks up on his own. They're not possibly things he's discussed in Sunday School or heard about at church. He has ideas that none of our other kids have come up with, regarding Heaven and God. And Michael Jackson.

Now Ella is following suit. I can see her mind expanding. I can see glints of imagination lighting up. The other day she informed me that God wears pants. And also that Heaven is far far far away. I argued that I believe Heaven is all around us, not up in the sky or far away. She disagrees. I'm not sure where she gets her information, but it's worth considering. Who am I to disagree about God wearing pants when I have never seen God in person? Maybe Ella's right, who knows.

I love exploring my children's world through their eyes. I love the funny, crazy things they say. A few weeks ago, I was upset with Ben for something, and I was talking loudly and adamantly (aka yelling, but that's such an ugly word) with him. In the middle of this heated discussion with my son, Ella came up to me, hugged my leg and looked sweetly up at me. Then she said "I luf you Mommy. Does that make you happy?" Gulp. I made myself calm down immediately and said "Yes, that makes me very happy. I love you too." Then I continued to deal with Ben in a calmer manner. My three-year-old is capable of reminding me to be calm. Kind. Compassionate. Even if I'm furious. How amazing is that?

Yesterday, Ella wouldn't put her shoes on when we needed to leave the house. I was explaining why we needed to have our shoes on and helping her decide that she did, indeed, need shoes on her feet. Out of the blue, she asked "Mama, are you mad at me?" What!? She's never said that sentence before in her life. I said no, I'm not mad at you! And we had a conversation about being mad, forgiveness, etc. Later in the day, I snapped at Ella because I was exhausted and hungry and even Mamas get cranky, believe it or not. I apologized to Ella for being crabby with her, because I know that hurts her feelings. She piped up "It's ok, Mama. I forgive you. I still love you." Sheesh. I am learning a lot from this tiny little being.

Jonah knows the answer to this question, but asks it frequently just to hear the answer again as reassurance. He asks "Do you love me? Will you love me forever?" The answer is always yes, yes, yes. I love love love you. But the question makes me stop in my tracks and pay attention to Jonah, who obviously is in need of some Mama Love at that moment.

I think kids are fascinating. The way their minds work. The things that make them unique. The questions they have. It's an incredible gift to be able to spend my life raising these four interesting kids. Yes, it's challenging and frustrating sometimes, and sometimes I get cranky and upset, but then there are these moments that let me see into the hearts of my kids and what I see inspires me. Sometimes I don't know how to answer their questions (especially regarding Michael Jackson or God), but I know that they know that they are loved and respected. And they make me laugh loud enough for the neighbors to hear every day.


SPD Halloween


Halloween is not such a fun holiday if you’re a small boy with Sensory Processing Disorder. Think about it- everyone you know, and many kids you don’t know, are dressed as all kinds of crazy things. Buzz Lightyear, princesses, aliens, hot dogs, the grim reaper. You get this group of bizarrely- dressed hooligans together and go from house to house ringing doorbells and asking strangers for candy. Everyone looks weird (and a little scary), and those weird people keep coming to your house to bug you. Weird.

Aidan is 6 this year, almost 7, and I think last year was the first year he agreed to wear a costume and go trick-or-treating. Those pictures Mama dreamt of, with all her sweet munchkins in their costumes on Halloween evening, giddy with the anticipation of all the candy they’d soon be getting…not gonna happen, Mama. I realized when Aidan was very little that this was not his cup of tea- dressing up in a weird, itchy, constricting costume to go outside in the cold with mobs of other weird, scary, strange children who were hopped up on sugar and whooping and hollering with their own excitement.

After his first Halloween when I dressed baby Aidan in the sweetest little bear costume, he’s been done with the Halloween Hoopla. When you have a child who has SPD, or any other diagnosis, you have to bend your expectations and learn to accept that all your little dreams might not come true. You might not have years of Halloween pictures with all your kids lined up, dressed in an array of costumes. But there are other dreams you can have that sometimes exceed all expectations.

For five years, Aidan would participate in trick-or-treating disguised as…himself…for a brief few minutes. Then he’d get tired and bored and cold and irritated with the whole crazy experience and we’d drag him home. Having to explain at every house that our 2-year old, then 3, 4, 5 year-old Aidan was dressed as himself got old quickly. People looked at us like we were a little nuts, not costuming our cute little boy. Like we were depriving him of some vital childhood experience. Like how could we call ourselves “American” when our child wasn’t dressed in a costume on Halloween! I wanted to shout at those slight scowls we got “It’s not MY choice that he doesn’t want to wear a costume like all the other good American children today! He has SPD!!” But I smiled supportively as Aidan hesitated before each door, waiting for his big brothers to get him a piece of candy instead of facing strangers in person. Even if the strangers did have loads of candy they were giving away free.

Last year, all four of my kids wore costumes on Halloween. I was pretty excited- I was finally going to get some adorable Halloween pics.
But Daddy didn’t make it home from work for trick-or-treating. So I was on my own with four kids who have SPD. Great. I was exhausted even before things got started, from trying to wrestle four kids into costumes by myself, with our doorbell already ringing with excited friends who wanted to see our costumes. The kids were tired and grumpy at the beginning of the excursion, so you can imagine how they were by the end. Jonah and Ben had just gotten braces a couple weeks before Halloween, and half-way through the trick-or-treating extravaganza they realized they wouldn’t be able to eat anything they had gotten in their loot of candy.

It was all downhill from there. Mommy was tired. No Daddy to trick-or-treat with. No one manning our candy bowl at our house. (As we walked by our own house, I saw a herd of teenagers taking the entire bowl of candy that had a sign on it that specifically said ‘Take 2 Please!’ so I yelled that they BETTER put that candy back for the LITTLE trick-or-treaters!!! And the herd ran off, leaving some of our candy for the smaller costume-clad beings. Don’t mess with the Mamas of little Halloweeners!) Not being able to eat the candy they got in their bags because of braces. It was just a disaster. So I turned our little crowd of grumpasaurases around and we cut the festivities short.
Sometimes your dreams have to be re-dreamt. Yes, I got cute pictures of costumed kids last year. But the experience itself of Halloween was not so fantastic. The one amazing thing that came out of that long, irritating experience last year was that Aidan put on a costume! He rang doorbells with his brothers and sister! He said “trick-or-treat” so that people could hear him and held up his own little bag for a goody! I was very proud. No more scowls from people. My boy was in a costume! We made it.

This year, we’ll see how things go. Aidan is very excited about his costume- Captain America. I think he’s getting caught up in the fun of it all, and is able to hold his anxiety at bay. I have learned to be flexible. It’s not the end of the world if my kids don’t all have a costume on for Halloween. My pictures will just have some costumed-kids, and some non-costume-wearers. Such is life. My hope now is just that all my kids have fun and make good memories of childhood Halloweens. Costumes or no costumes.