I HEART SOPHIA

When I am away from her, I find myself pining for Sophia’s physicality. This connection to her corporeal existence is something for which I was not prepared. Prior to her birth, I had only thought of how I would teach her and nurture her mentally. Nearly every physical activity I had imagined with her was related to her intellectual development. I had no idea how strong a physical connection we would share.

I assume this is something that happens to all parents. After all, the manifest reality of two bodies coming together to share some biological goo which forms into a completely new body both familiar and strange is, without a doubt, life changing. But, I suspect, this is amplified when the child is born with some type of physical defect. This is not to say my new found relationship with the human body is one of only deficit or loss, quite the opposite. It is joyful in a way I could have never dreamt. And sometimes, painful in ways I never thought possible.

Playing with Sophia is, for me, a profound experience. When we roll around on the floor, laughing in ecstatic bliss I cannot imagine a high that is any higher. When I carry her to bed and she nuzzles my neck with her velvety cheek or when she sits atop my chest watching a movie, I am enraptured. Watching her sleep is the most satisfying and beautiful scene I have ever experienced. To kiss her little hands and feet makes me feel as though it is all I was ever meant to do. When she bolts naked from the bathtub to find me and lays her cool damp head in my hand all my desires are miraculously fulfilled. When I put my ear to Sophia’s back and hear the pronounced wush of her heart, I am immediately conscious of the thump of my own. At once, I can picture with perfect clarity the repaired structure of Sophia’s heart. And somehow, in that position, my ear against her, as her chest expands and retreats, I feel like everything is going to be alright.

However, it doesn’t take much imagination for me to be transported to a very dark place. A place where Sophia is stock-still in a way that seems completely unreal. Where her blood is being oxygenated by a machine and her little body has been chilled to the point of hypothermia. Her chest has been flayed open and a surgical team is working to restore some semblance of normalcy to her malformed heart. Thankfully, I am not able to picture this scene at the time it is actually happening. And it is obviously not something of which Sophia is aware. But when I do see these images in my mind. It only emphasizes the incarnate mortality of the human body.

Only in very specific circumstances am I able to connect the body in surgery to the body of joy. I think this is the mind’s protection strategy. But I believe the relationship I have to Sophia’s physical nature is heightened by the perilousness of her surgeries, in the same way an athlete or dancer is more connected to their own body by pushing it through exercise. Her surgeries at once affirm her physical resilience and vulnerability. Somewhere between this seeming contradiction, between Sophia’s sunny smile and the subtle white stria that runs the length of her sternum, lies truth. And somewhere in that inescapable truth lies the sublime. It is here the profundity of our physical relationship makes perfect sense. To me, anyway. I only wonder how Sophia might grow to see it.

I wanted to publicly thank all of the people who walked on our team this year for the heart walk and those who donated. I turned in the last of the money that Michael and I personally raised yesterday. We hit a new record high this year. I am really happy about how generous our friends and family have been to us. We raised just $45.00 short of $1000.00! Our little team that walked for Sophia raised over $2000.00. For us it was not so much about how much money we raised but more about spreading awareness of CHD’s. Our team carried signs with CHD statistics on them and they got a lot of attention. Thank you so much Angela for making those signs, they were great.

Sophia and I have not gotten out too much this week. This afternoon we are going to the library to hear some children’s music. Tomorrow my mom is coming over to hang out with us while I do some heavy cleaning. It is time to get rid of all our baby stuff. Sophia is getting a new pink toddler bed next week. She will love it because she will think it is a princess bed. Michael bought her a new easel and we set it up in the office to encourage her to draw spontaniously. She is supposed to start receiving therapy through the school district next week. ALMOST all the details have been worked out.

That’s all for now. Hope everybody has a nice weekend. I will post next week about how the new school and therapy goes. As always, thanks for checking in with us.

We had a great weekend.  Yesterday we went over to my parents house to have pancakes when we got up.  Then we took my dad’s boat out for a ride around their city lake.  Sophia had the best time.  She always refers to my dad’s boat as the pirate ship.  We took her jolly roger flag and pirate hat and she got to pretend to be a “real” pirate.  Dad let her drive the boat for a while and, boy, did she love it.  It was a beautiful morning here, not to hot and sunny.  I grew up on a lake and it had been a really long time since I had been on a boat ride with my parents.  Later we took Sophia shopping to buy some new puzzles as a reward for giving up her “binky”(pacifier) and having a “mostly” accident-free potty week (she had one small accident…all week).  She is so into putting together 25 piece puzzles right now.  The kid would literally sit at the table and play them for hours if you will hang out with her.  She gets so excited when she fits the pieces together.

Sophia is really missing school and her teachers.  She asks about going every day and thinks every school bus she sees on the road must be her’s.  We are supposed to start taking her to receive therapy through the school district this week, but the details are still not ironed out yet.  I am planning to enroll her in swimming lessons for July at a pool close to her daddy’s work.  Sophia loves to go swimming so we are hoping this will be good physical therapy for her.

Today is Michael’s birthday and we are planning to bake him a cake this morning.  Sophia says we should get him some balloons too.  Tonight we are having dinner with his parents to celebrate.

I wanted to mention before I finish up this post that Sophia has a heart cath scheduled for August 7th at our local children’s hospital.  I am already starting to get emotionally worked up about this upcoming date.  Michael does his very best to defuse my worrying, but I sometimes let it get the best of my mind.  Sophia’s next surgery is like this huge storm cloud coming up just behind me, but you never know when it is going to hit.  The only real way of measuring her progress (heart-wise) is to have these cath’s done once a year.  Mostly I just want the surgery to be over and done with for her.  I personally just want to put it behind us so I can stop freaking thinking about it and planning my life around it.  Anyway, thanks for allowing me to rant about it.  We appreciate you all for checking in with us.

Sophia has had no accidents today.  She is now potty trained.

She will not use her “potty chair,” only the big girl toilet.   We only have one bathroom in our house.  It is downstairs on the main level of the house and our bedrooms are upstairs.  Sophia was helping Patty put away laundry upstairs today, and said, “I need to go potty.”  Patty led her to the potty chair in her room and she said, “NO, I need to use the big girl potty.”  So she took her downstairs and Sophia ran into the bathroom and made it to the toilet.  This was the only close call today, and she did great.  She hasn’t needed to use the bathroom as much today as we haven’t been pushing the water and salty snacks today.  I am sure Patty intends to try to venture out of the house tomorrow or Friday.  I suppose that will be the next hurdle.  But, I am optimistic that Sophia won’t have any accidents.

We tried to go overnight without a diaper.  That was less of a success.  She woke up really wet.  Patty helped Sophia strip her bed and gather all her soiled bedding and Sophia put it into the wash on her own.  Sophia is such a sound sleeper. I think we are going to have to do a pull-up diaper overnight for a while.  But that is OK.  Because Sophia is toilet trained and that is AWESOME.

Patty started potty training Sophia today.  She has done really well. But she is way ready.

She has been out of diapers all day.  She has had three small accidents but has been successful a half a dozen times (…not including just now).  No poops yet.  But, she hasn’t had trouble anticipating and getting to the potty for poops in the past.  We are going to be diaper free all week and hopefully be potty trained by Friday.  Wish us luck.  (Patty is doing most of the work…so she deserves a huge pat on the back.)

Also, there are new videos on flickr.

UPDATE: I forgot to mention that Sophia has bronchitis.  She has had antibiotics six times since February.  I certainly hope Summer will be kinder to her.

Who ever would have thought that I could actually be sad about Sophia’s preschool year coming to an end.  But I am.  I have never known a child to love school so much.  Personally, I always hated going from as far back as I can remember.  Our family lives is the notorious Kansas City School district which has been considered below average in quality since my father attended the district as a child.  Before Sophia started school all we heard was how awful it was and that we should anticipate trouble from the district.  I seriously can not complain about the quality of Sophia’s schooling, so far.  She had wonderful teachers and therapists and made tons of progress.  We had very few issues with her bus ride to and from school and overall were very pleased with how things went this past school year.  I really must give credit to Sophia’s teachers and therapists for doing such a good job.  I wrote each one of them a personalized thank you note which I delivered a couple of days ago.  I have been trying to explain that tomorrow is Sophia’s last day of school, but I know she just does not understand.  I truly believe Sophia loves her teachers like they were family and does not at all understand that what they do is a profession/occupation/job.  Because of these people my daughter has a wonderful positive attitude about learning and school.  This in turn makes her father and I so happy.  I feel so blessed that she was placed in such a nurturing environment to begin her schooling.  We sincerely hope next year will be just a great or better than this year.

Michael and I changed our minds about summer school and have decided to only send her to receive therapy through the district over the summer.  We want to give her a break and let her learn by doing activities around our community.  I am going to put her in swimming lessons in July.  Our local library has tons of preschool programming and we intend to participate in that as well.  We also have a family pass to the zoo.  I am really excited to have my baby back to myself over the summer.  She will be so glad to not have to get up in the morning so early too.

We are planning to celebrate her cousin’s birthday this weekend by going to the pool for the first (cold) swim of the summer.  Sophia loves to swim and asks to go all the time, even in the winter.  So this will be a really big deal for her.  Hope everybody out there in internet land is enjoying some summer activities too.  I will post more in a few days. Please leave a comment if you have time.

Here is a link to some more photos from the heart walk.

Heart Walk is tomorrow. We will be up early and walking in honor of Sophia. If you would like to make a late donation, we would certainly welcome it. There is a link to the right under the pages heading. We are excited that Sophia will be able to walk this year. She has always been carried by me, or some other form of transport in the past.

I have been sick since Tuesday night. But the antibiotics I am taking seem to have kicked in and I think I am on the mend.

We had some family photos taken this morning. I will try to give you a peek at them once we get access to them.

Sophia’s school carnival was tonight. She had a really good time. There were only a few activities she could do and they ran out of veggie burgers but we still enjoyed it. I took a little video I will try to get up in the not too distant future.

Although Sophia is still on antibiotics for another week, her ear infections seems much improved.  I still do catch her with her little finger buried in her ear a couple of times a day.

We are looking forward to a long weekend where no one is sick and the weather is not too hot.  We ended up buying a family season pass to the zoo a couple weeks ago and plan to use it a lot this summer. Saturday night, we are going here.

We are meeting with Sophia physical therapist tomorrow to get an end of the school year wrap up.  It is our plan to send her to summer school so she can continue her therapies with the school district.  Summer school for her is a “shortened program” that is only about 5 weeks long consisting of about half the therapy time she ususally gets.  It is also going to mean a much longer bus ride for her.  Sophia LOVES to ride the bus, so that part is no big deal.

Sophia got to spend the night at my parents house on Monday night for the first time.  She had spent the night at my in-laws about three years ago for our anniversary, so to us this was a big deal.  Wow, she did SO good and had so much fun.  She played in the yard with my dad all afternoon.  Then they took her to see an animal enclose where she fed carrots to elk and buffalo. Afterward, they stopped to get her very own ice cream cone on the way home.  Mom gave her a bath and she gave them no trouble about going to bed.  She ate a really good dinner and took all of her medication.  I am so proud of her.  We are planning another “grandparent’s night” with her other grandparents in July.  She (and they) will have tons of fun I am sure.  Hope everyone has a good holiday weekend and gets to relax.  I will post more later.

Wednesday, we saw the ENT so that he could pull out one of Sophia’s ear tubes that had become dislodged.  He was able to do so with not much effort and cleaned out both of her ears of a lot of wax and junk that had been building since the last time we saw him (a month ago).  He said he ears looked good and to continue ear drops for a couple more days in the ear that she’d ruptured the eardrum a week and a half ago.

After our appointment Sophia took a hearing test in their sound booth.  The test did not go as well as we would have liked.  She did not respond very much to the lower and softer tones.  We were not sure if this was because she did not actually hear them or if she just was not being cooperative.  Consider this, it was 4:00 and she had not had a nap and she’d had both her ears just dug into.  So the test was rescheduled for a month later.  Sophia passed out asleep in the car on the way home (4:30p.m.) and when we got her home she refused to wake up to eat dinner.  So I put her pj’s on her and gave her all her night time medications, and Michael put her to bed.  She slept until 6:30 the following morning when I woke her up.  She was grumpy in the morning and barely ate anything before I put her on the bus for school.  She came home from school kind of flushed and would not eat any lunch, even after I offered her mac and cheese (her favorite).  I put her down for a nap around 2:00 and went back up at 4:00 to check on her.  She was really warm and pale and had puss coming out of her right ear.  I took her temperature and she had a 102.7 degree fever!  I gave her tylenol but it did not go down.  I took her to urgent care at her pediatrician’s office.  I was worried that she was having complications from her pneumonia, but she just has a horrible ear infection, AGAIN.  She felt so awful and just wanted to be held and sleep on us.  My poor baby, she has been sick more than well lately.  Thursday night was pretty tough for her.  She woke up crying from pain four times.  Yesterday, she felt better and had a fever of 99.  She had to miss school yesterday.  Sophia never eats when she is sick.  Michael got her to eat a few bites of rice last night, but that is pretty much all she had to eat yesterday.  So far this morning she seems better with no fever.  It seems this kid cannot catch a break lately.  It is such a bummer for her to always be ill.  Let’s hope things are better soon.