Maybe I should have realized sooner...

I worry a lot! Parents worry about lots of things with their kids. With everything going on with Conor I worry about what future struggles he will have. I see how these struggles hurt kids and I don't want that for him. So I worry. Like it will somehow solve something. I know it won't and so I try not to let myself worry.When I worry I get upset because it seems so unfair for Conor.

People like to point out the positive when I update them about Conor. Often the positive people find is that Mike and I are well equipped to handle this. We have the knowledge to help Conor in his delays. I know people are trying to be helpful but this bothers me. It bothers me because it seems unfair to Conor. Because Mike and I choose careers in which we help people (which I think Gd would like), that Conor would have to suffer with difficulties. I'm not even sure that it makes sense but it feel like Conor is being punished because his parents happen to be equipped to deal with his delays. I know this isn't people's intents when they point this out. It is just how I've been thinking about it.

I know people feel like its a blessing we know what we know. And usually it is. But sometimes I feel like it is a negative because I know how hard this is on kids and so I worry. Even more.

This morning I had a realization though. What's unfair is the kids who are delayed that have parents that did something to cause it. Its unfair that some kids with significant impairments have parents who don't even try and make an effort. Those poor kids that have to go through the trials of having a disability alone.This is probably what people have meant all along when they point out how well equipped Mike and I are. I just wasn't there yet I think.

It changes you

Today I was reminded over and over again how being a mom changes me. Starting this morning. I woke up to the sounds of Conor screaming in his crib. Happy screams mind you. Apparently Conor is learning different noises he can make with his voice. And so he screamed just to scream. Mike got him and changed his diaper and we lay lazily in bed while Conor toddled. One of my favorite parts about lazy mornings. Then Conor came to me said "up" and so I picked him up and he lay between Mike and I in the bed. He cuddled up and laid on my chest. We rested there until he fell back asleep, head on my chest, arm draped over my stomach. I sat in awe of my life. Who knew this would be one of the best moments I can think of. And I wondered, how do I keep my relationship with him this strong as we go through the trials of growing up?
Can I make sure we always have such a pure loving relationship? I hope so.

Later we went out. Conor continued making silly squeals. Mike joined in. Who knew a car full of screaming boys could make me laugh and smile and love my life. We drove to Toys R Us to see if they had Ravens jerseys to fit Conor. No luck! But we walked around playing with all the toys. Seems like a good way to get Conor out of the house on a cold winter day. I watched him so excited to play with all the toys. His face really lights up. Toys R Us makes me want to buy every toy for him. But we lack the money and space. I always tell people not to overindulge their kids. Its not healthy for them. I have to practice what I preach. It sure is hard though. So we left with some beach toys that were on clearance. Mike and I recently planned our summer vacation (it has been years since we've gone) and I think we were both a little excited. Oh and it was on sale!

There wasn't really anything special about today or the weekend in general. It left me with an overall feeling of satisfaction with my life. I love those moments.

Conor's first time playing in snow this weekend,

Tonight I taught a parenting class. I love teaching the classes but I hate that they are in the evenings. As I left the class Mike texted me that he was doing story time in 2 minutes. Desperately trying not to miss it I called and told him I was on my way home. Too late they already stated. I was crushed. So I raced home desperate not to miss all of story time and prayers. As I raced home I thought about how when I teach these classes I talk over and over about spending quality time with your kids. Ironic I thought that to teach that class I risk missing what is quickly becoming my most favorite quality time with Conor. I drove home amazed at how sad I was to be missing story time. Being a mommy changes you I guess.

When I got home I was so glad to see his bedroom light still on. I raised upstairs just in time to hear the end of "The Cat in the Hat". We said our prayers and I cuddled him and said good night. All and all a good day!

Perspective

I find that perspective is so important in parenting. Your perspective can change any given situation. What for some could be an insignificant interaction could be extremely important to another. Thus one of the most important tools in parenting is being aware and managing your own perspective. You can't control your children but you control your reaction to them by changing your perspective.

Mike once told me about an article he read when that killer whale killed its trainer. Apparently the reason these whales who are supposed to be harmless to humans sometimes become psychotic in the tanks they swim in. Killer whales swim thousands of miles a day up and down the coastlines in the wild. In captivity they swim those thousands of miles in circles in a tank. This eventually brings them to a psychotic break or so Mike told me I didn't fact check. When Conor was learning to walk I understood how those killer whales might go a little crazy.

He walked just in time for Halloween!

Conor had a lot of difficulty learning to walk. As we later learned he had low muscle tone. Yesterday I learned his muscle tone is lowest in his ankles. Poor kid no wonder he couldn't walk.  He couldn't walk independently I should say. He LOVED to walk! He just needed your hand. And any parent knows those days where your child is learning to walk, though exciting, is backbreaking. They are not quite tall enough that you have to bend over just a little and they are so eager they want to walk everywhere! Well Conor wanted to walk all the time so he walked up and down my little house. I had to walk with him. He did this from 11 months old until he walked at 17 months. Up and down from front door to back door. I often thought of those poor killer whales.

When I would start to identify with those killer whales I would get Conor's shoes on and take him outside so we could walk the block. People would say "oh he's walking!" and I would begrudgingly respond "not yet". Then I wold inevitably be told that I will wish he wasn't walking when he learned how. Conor finally walked 3 months ago. As for all parents I was so excited when he walked. But unlike what people told me I have never in the last 3 months wished he couldn't walk. Even in his most difficult moments pulling items off the shelves in the grocery stores I know I would rather that then feel like those whales again.

I find a lot of those moments with Conor where my perspective seems so different. And moments when I realize how differently a situation can be interpreted with another perspective. One of the first words I was able to get Conor to understand was "no". When he was beginning to understand the word no I would get one of two reactions when I said it. The first was no response at all. This of course meant that he would continue with what he was doing. The second was for him to look at me, shake his head no and then stop what he was doing. To most people it looked like Conor was asserting his independence and telling me no (he was old enough at the time for this to be what a lot of kids would do). But to me I knew that Conor shaking his head no meant that he was understanding what I said and would follow the direction. Parents would sigh and tell me something like "they always learn no first". I'd want to explain that he was actually following directions but that would be to complicated. Its just all in perspective.

I'm almost positive perspective is what got me through 9 months of morning sickness too. I'm almost sure if I hadn't thought I'd never have a kid that those 9 months would have convinced me I never wanted another one. Luckily I still want more. But maybe when Conor is more independent.

Appointments

It's strange I knew January was going to be kind of a marathon month; doctor's appointments every week, all at least 30 minutes away most even more, in addition to his normal therapy appointments. I did not really expect to be as stressed about the whole process as I am. I remained relatively calm throughout the hospital visit and weeks leading up to the appointments. I had surprised myself in fact as I tend to worry to much so I was actually proud of how together I had been.  So its coming as somewhat of a shock that I'm stressed.

But lately I find myself more stressed. Usually I'm fine on days I have to work and then when my work week (which ends Wednesday) is over the stress kicks it. I can feel it in my body and I don't sleep well. I generally think I have a stressful job so it seems crazy for me to have my home life more stressful then my work life.

Tomorrow is Conor's appointment with the White Matter Neurologist (apparently neurology is not enough of a specialty..Grey's Anatomy never informed me of this!). I'm looking forward to this as I have sooo many questions to ask especially  after  the appointment last week with the neurologist. According to the neurologist we saw last week the "spots" they found in his MRI are actually scarring in his white matter. She mentioned that the scarring actually explained some of Conor's delays because he has to for new connections because the normal ones don't all work. I was somewhat caught off guard by this explanation so I did not ask much to clarify it. I also was planning on learning more about this during tomorrow's appointment so I had other issues to speak with the doctor about last week so I lack much clarification on this. This all makes things make sense to me as I always felt like a lot of Conor's shortfalls were a processing issue. I guess this confirms that.

This doctor informed me that she felt Conor's bizarre behavior was self stimulation which I was still uncomfortable with as an explanation. I'm mostly uncomfortable because nobody can give me a good explanation for why he would be doing that and since they didn't catch it on the EEG I would just feel more comfortable knowing for sure that they are not seizures.  The doctor agreed to another EEG however since it did not occur the first time. So we have to figure out the details of doing that around these other appointments as well.

All of this made me feel better for a while. I focused on the positives like the fact that while something is wrong with his brain its not fatal. He's young and his brain is more malleable and it will therefore be easier for him to overcome some of these issues. And at least we have some answers though we need more.

But the past couple of days I've had a harder time focusing on the positive because I've been angry. The only thing they can guess caused this for Conor was that something must have happened when I was pregnant (like an infection). So I get angry, Angry that all these people who don't follow the rules when they are pregnant have babies with no problems. Angry that I followed the rules while I was pregnant because even when people would say oh one drink occasionally is alright I never had any because it was not worth the risk. Angry that I would have people tell me "oh it doesn't really do anything my (insert person here) did it when she was pregnant" when I would say I would prefer they not smoke around me.

The emotions always come in spurts, it has since the beginning of all of this months ago. I'll be handling things well and then I get to a point where it gets upsetting. When we first started noticing there was something not right I would get very upset when I would see Conor with kids his age or younger. It would feel like a slap in the face when younger kids could do things Conor couldn't. But I got over that. So I'll get over this too.

I know that I am so totally blessed to have Conor. And I know that I am extremely fortunate that he is such a well-behaved and easy kid. And I need to continue to try and focus on these so I can be positive because one of the things I love most about him is how incredibly happy he is. And I don't want him to ever lose that even if things are more challenging for him then I would like them to be.

So in keping with positivity I will hope and pray that there will be positive answers to my questions tomorrow. And that driving to DC for an 8:30am appointment comes with minimal rush hour traffic!

Mixed

Tomorrow is Conor's first follow up appointment from the hospital. He's going to see his neurologist who he originally saw months ago. I had been looking forward to this appointment as I really like the doctor and feel like it will be helpful in figuring out what is going on. I'm hoping tomorrow's appointment brings a good plan of how we go about figuring things out.

As the appointent grows closer I'm beginning to get mixed feelings. On one hand I worry that the plan will be to wait and see what the other doctors say....more not knowing. On the other hand I don't really want a plan that involves more testing and poking. I find myself at this weird point where I'm afraid all these doctors will be telling me they have no answers for what's going on and that's that. But then the alternative seems to be that they will have to run more tests which means putting my little man through more crap.

Where once I was eager to get answers and figure things out I know feel nervous about leaving this point I had grown comfortable in the past couple weeks. The point where I have the comfort of knowing that at least there's not something horrible on his brain like a tumor or something. And at the same time knowing there's a plan to get answers after seeing all the specialist but not actually having any bad news.

It seems January starts the marathon of doctor's appointments which I feel will lead to me eventually hearing what's wrong (a hard pill to swallow regardless as nobody wants something to be wrong). Or the alternative is a bunch of doctor's telling me they can't find anything wrong, which leaves me left stuck in the unknown while I feel in my gut that somethings not right. Either way all the options seem negative. So I guess my hope is that since I don't know all the answers maybe there's an option I'm missing....here's hoping!

My miracle

 

My husband, Mike, and I tried for a few years to have a baby with no success. When we finally had the money (or better yet insurance) to cover fertility treatment and I gathered the courage to go through the scary and emotional process we headed to see a fertility doctor.

After lots of testing and needle pricks we tried a cycle IUI. For those that have never done fertility treatment this is when they pump the woman full of hormones and take the sperm (which they do some wash to that makes it what I like to call super-sperm) and insert it in the woman to optimize chances of fertilization. The whole process requires lots of hormones and sonograms and blood tests to ensure optimal timing. The hormones add an extra layer or emotional struggle to the already emotionally draining journey of infertility.

Our first cycle of IUI was unsuccessful and at best disheartening for me. So we tried it all again the next month. Only the second month after they completed the procedure they told me it would likely not work and schedule for me to discuss an IVF procedure with my doctor. I was devastated. Mike and I decided we could not afford IVF especially if it could take more then one cycle. So we worked to come to terms with the idea of a life without children.

For me part of this process meant telling my family that Mike and I will be childless. So one day I went to my sister's and cried on her couch as I told her what I was working so hard to accept. I cried and told her why I felt a family was not possible for us and how difficult it made even happy occasions.

Meanwhile we had to continue with the routine blood test from our second IUI cycle to check for possible pregnancy. So a week after crying on my sister's couch I had a blood test and wouldn't you know I was pregnant! And there we were on the road to parenthood.

In the weeks following whenever I would tell people I was pregnant my mom would make sure I also shared how the doctors told me this wouldn't work. I never really knew why she always insisted on telling this part but it did one thing for me. It made me feel more and more that my son was a miracle. Maybe this was my mother's intent I don't know. What I do know is that this feeling has helped me to truly treasure my son even when it's tough.

Lately I've been thinking about how my difficulty conceiving helped me to be prepared to cope with our recent challenges. When Conor was in the hospital before Christmas I reminded myself a lot that he was a miracle and that certainly helped my faith that things would be alright. (For those concerned we have no real answers on what's going on with Conor but a long list of doctors appointments to help find out. I imagine that partly why I wanted to start this blog is to help myself process the feelings that come along with figuring out how best to help my child).