Mixed Emotions

Yesterday was Cale's much anticipated doctor's appointment.

We got up incredibly early so that we could compete with the rush-hour traffic and arrive on time. Both kids were roused with sleepy eyes and looks of, "why on earth are you disturbing me from my peaceful sleep at this hour?" I, too, probably looked the same way since I tossed and turned most of the night, wondering anxiously about our meeting with the doctor. I wasn't sure what to expect and for those of you reading that have kids, you understand that your children are the most important things in your world and the possibility of receiving bad news about one of them is simply unbearable.

We arrived at Seattle Children's Hospital on time and even a bit early. The sun was shining and my attitude was surprisingly positive and eerily calm. I had no worries. We walked through the doors, checked in, and began the ongoing event of waiting. I truly believe medical offices just shuffle you around from place to place to make you feel like something is actually happening, but really they're just moving you to a different place to wait. Cale's appointment was broken up into two different parts; the first segment was a meeting with an occupational/physical therapist that basically went through a series of tests to determine where Cale was developmentally. The second segment was the actual meeting with the doctor. Cale did amazing with the OT/PT and even surprised them with how much he was able to do. Alex and I, of course, puffed out our chests with what I'm sure was a "Yep, that's our son" kind of look. We were so proud. After that was finished we were transferred to a different place where we then waited for the doctor to see us. Waiting. Waiting. And more waiting. It was during this portion of the morning that I started to become anxious. What if she came in, took one look at our son, and told us that she'd seen hundreds of kids just like him and that the future for him was bleak? What if she was able to put a name to whatever condition Cale has, because then I would be forced to spend countless of hours on the internet researching credible or non-credible information, all the while giving myself an ulcer. What then? Thankfully Riley was crying and squirming all over the place that I was forced to focus my mind on her rather than run through all of the worst-case scenarios I had been dreaming up during the weeks prior to this day.

Our name was finally called.

The doctor's appearance surprised me. She was young, very attractive, and made eye contact with us which had not been the case with the two previous neurologists we have seen. She was seemingly normal and even had a 31-week preemie herself. She was my kind of gal and I instantly liked her. She asked us hundreds of questions about Cale's history, looked him over and played with him a bit, and then gave us her opinion. Gulp. She suggested that we submit to some sort of genetic test with an incredibly long name that I definitely cannot remember. We have had genetic testing done before but apparently there is a new one that can pick up even the slightest abnormalities in the genetic code. This test is anywhere from $1300 to $3000, depending on what your insurance is willing to pay. Another gulp. She said the chances of this test finding anything is probably less than 1% and so Alex and I are currently debating on whether or not we want to do it. She also said she didn't think he had a syndrome because there weren't any physical features that stood out on Cale. We kind of already knew that but it was good to get her confirmation. The only thing any doctor has been able to "diagnose" him with is cerebral palsy and so I asked her if she thought that's what he had. She said no. Her nurse then came in, handed us some paperwork, and gave us the option of coming back in a year even though the doctor didn't think it was necessary to see us again. All of that worry and anticipation for twenty minutes. Was it worth it? I'm not sure.

In summary, she wasn't able to tell us what Cale has. She doesn't think it's cerebral palsy or any sort of syndrome but she does recommend we seek out that genetic test. She believes Cale will continue to make gains and progress forward, which really was our best-case scenario and all that we could hope for. She didn't tell us his future was bleak or give us the news that he had a condition that would limit his quality of life. Overall she was very positive and I suppose we should feel very good about that. For some reason I'm left feeling like perhaps this was a waste of our time because we are leaving knowing nothing different from what we already knew. On the other hand, we made the appointment to have a different set of eyes look at our son and get an "nth" opinion, which we got. Mission accomplished. Cale truly is unique and there's no question in my mind that God made him exactly the way he should be. I love my little boy more than words could ever describe and there's nothing any doctor could ever say to change that. We joke that there's a different time zone called "Cale's Time" and I'm truly beginning to believe that it actually exists. Everything on his time..

I'm glad it's over and perhaps one of these days I will truly be at peace with not knowing the why or the reason for why Cale is the way he is.

Seattle

We are in Seattle now and have been for the past three days. (I might have mentioned this in an earlier post but my mommy brain makes me forget things every now and then.) We are scheduled to meet with a "pediatric developmental specialist" that has been referred to us by several other parents who have children with special needs. The medical community in Missoula, albeit supportive and sympathetic, has not provided us with any answers concerning Cale's diagnosis. This is both a blessing and quite frustrating. It is a blessing because we don't have a diagnosis that gives us a future full of hardship and grief, because for now we still have hope that one day Cale could very well turn out to be "normal". On the other hand, it is frustrating because we have no way of predicting where he will be in ten, twenty, or even five years. I suppose this point is somewhat void considering no one is able to predict anything about the future, but it would provide a lot of comfort to both Alex and me if we even had a vague idea. To be honest, I haven't given this doctor appointment a lot of thought and now that we are less than 24 hours away I am getting a bit nervous. I'm nervous because this doctor might give us a diagnosis. What then? Maybe it's better not to know. Or what if she tells us that what we've been doing so far has been all wrong? I'm trying really hard not to let my mind wander but the paths of worry are pretty well traveled in my brain.

On another front, Alex's mom lives here and so that's who we've been staying with. We've had TONS of fun since we got here but I'll write more about that later. Please send a prayer our way as we seek out more answers tomorrow!

THANK YOU!

Changes

I've always viewed change as a good thing. I think change creates opportunities that we might not have discovered otherwise. Change opens doors. Change is one of the reasons why Alex and I are such a great fit; he squirms at the thought and I crave it. Together we keep one another in balance.

However, Riley is opening my eyes to change that I am less inclined to greet with open arms. She has developed an attitude that surpasses the nickname "drama queen". She's happy go-lucky one minute and then screaming at the top of her lungs the next. Cale's water cup is apparently far better than hers, therefore she feels the need to throw hers clear across the room to make it apparent to me that it is no good. I may also have the first child to attend kindergarten naked because I would rather send her off with no clothes on than wrestle her to the floor trying to get her dressed. Diapering is much of the same so I can only pray that she is potty-trained by age one. Oh, and hats - just forget about those! I also wasn't aware that the sign for not wanting to eat was flailing one's arms at mach speed in hopes to knock the spoon and all of the food on it towards the four surrounding walls. Perhaps then I might understand that she's full. I've also learned the universal sign for getting something you want is screaming until your face turns blue. Literally. Maybe when she passes out from lack of oxygen she'll think of something less dramatic, such as pointing. Riley has also adopted a new bodily gesture for letting me know she's not happy. She has mastered the stomping of her foot which partly cracks me up because it reminds me of my sister and her daughter, and the other half makes me want to say, "seriously, already?".

My sweet, innocent little girl is rapidly changing into someone I don't always like. I blame Eve for not listening to God and Adam for showing poor leadership. I still love her with all of my being and during her sweet moments my heart still melts, but the tantrum-throwing toddler stage is quickly approaching and this time it's me squirming at the thought of the change that has yet to come.

In other, better, news, Cale is experiencing some change himself. He has shown a complete desire to be up and mobile like everyone else. Crawling is no longer sufficient and I think he finally has enough motivation to get walking very soon. He can now stand up on his own, maintain his balance, and take a step! This is monumental!!! He's been taking two to three steps when we help him get going but this time he's figured out how to do it from his very own steam. God continues to amaze me by showing me that He has no limits for my little guy. I truly believe there are no boundaries and each day I'm reminded of how thankful I need to be in how far God has brought Cale. The work He has done with my son is indeed a miracle.

Changes, both good and bad, are a part of life. I suppose I should just be thankful that today, and only today, everyone I love is healthy and on this earth. Who knows what tomorrow could bring.

Wahoo for the weekend!!!

Thank goodness for Friday! With Alex being gone this week and just getting back yesterday, I am more than ready to embrace this weekend with outstretched arms! The weather is gorgeous and I think it's supposed to remain this way for the next couple of days. I see many visits to the park in our future.

One thing we hope to accomplish this weekend is to purchase a new bed. Let me give you some background information that led us to making this decision. We are currently sleeping on a "full" bed with a mattress that I've had since high school. The headboard is a hand-me-down from Alex's little brother, Ben, that he so thoughtfully spray painted black. The frame to our bed is probably over twenty years old and is to the point now where I don't think I would even consider it a frame. Alex and I both knew about this situation when we got married and being the love birds that we were, we happily embraced the opportunity we saw in having to sleep so close to one another. Now, however, we toss and turn all night long desperately trying to get comfortable. The sheets get tangled at our feet, the comforter falls to one side, elbows are flailing, feet are kicking, and just when we start to think it can't possibly get any worse, a sound that I can only describe as a "BOOOOONNGGGGG" loudly trumpets from underneath our bed. I have no idea what is making that sound but at this point, it's enough for me to spend whatever amount of money it takes to give us a good night's rest. We are on a mission and neither one of us is ready to back down until we find the perfect bed. Enough is enough.

In other news, we also hope to get our backyard summer-ready. I love our backyard and deck and since during the summer we eat almost every meal outside, it's definitely time to get the weeds pulled and the plants and flowers planted. I just finished washing all of the windows and doors, inside and out, and so now all that needs tending to is the yard. Hopefully the weather cooperates.

Alex and I are still going back and forth on replacing the flooring in our house. We want to do hardwood throughout the downstairs and then replace the carpet upstairs, but since our moving date has been pushed back about a year, we are wondering if we should wait on doing these upgrades until we're a little closer to moving. I personally think we should do it now because I think new flooring will make living here for another year more enjoyable. I love our house as it is but pretty hardwood and plush carpet would make me love it even more! :)

I hope everyone has a relaxing and enjoyable Memorial Day weekend!!!

WOF Conference

W.O.W.

That's how I would describe the Women of Faith conference that I attended last weekend in Billings. I wasn't quite sure what I was expecting but it definitely surpassed any and all expectations I had. We heard from many amazing speakers, most of which brought me to tears with their stories, and the worship music was phenomenal!!! I especially enjoyed being able to spend that time with my mom, sister, and mother-in-law. I'm not quite sure if I have ever been in the company of so many women at one time in one place. It was definitely an estrogen fest.

I took away many things from what I heard but I think the main thing I will hold onto is God's plan for my life and for the lives of my family. For whatever reason God has for giving me a child like Cale is all in preparation of delivering a "Grand New Day" for us. I've known this in my head since the very beginning but I felt like this weekend helped me to accept it into my heart. God's plans are perfect and He does not make mistakes. Cale was not a mistake. Even though doctors explain Cale by telling us that something just didn't connect right in the womb, God actually made each connection to His liking and His perfection. I truly believe we are at the start of something amazing. I'm still sad and I'm sure I'll get angry from time to time, but I can rest in the promise that God is with me and each circumstance He puts in my life is ultimately part of His perfect plan.

Okay, enough of that. Alex is out of town for a few days and let me tell you, when he is away I am reminded of how incredibly blessed I am to have a partner to help me raise our children. I have a tremendous amount of respect for single moms and to be honest, I have no idea how they do it. How do you do it???!!! Alex gets home Thursday night and I cannot wait!

Ahhhhh, kids are napping and I think it's now time for me to take a nap. zzzzzzzz

Updates!

Life has been busy busy busy lately. I'm not exactly sure what we've been doing but for whatever reason I feel like each time I'm able to plop down on the couch deserves a sigh of great relief!

Alex's mom from Washington came to visit us last weekend. Cale loves his grandma and it was quite evident when Monday came and Grandma was no longer around to play with. Can we say "cranky"? Thankfully today has been better but yesterday was definitely a test for my patience. I had a nice Mother's Day despite the fact that we didn't really do anything special. Alex's mom left Sunday afternoon and then we went up to Alex's other set of parents' house for a nice dinner. Cale and Riley got to a ride around in the wagon, stopping at the swing set and a brief look at the horses. At one point one of the horses was sticking out it's tongue and Cale quickly imitated it by sticking out his. I wish I would have had the camera ready; it would have made a great photo!

We finally buckled down and got Cale set up for occupational therapy. It's been one of those things lurking in the back of my mind for quite some time, but the thought of adding yet another therapy session into our week made me sick to my stomach. On one hand, we want to do absolutely everything and anything to help Cale reach his potential, but on the other hand I just want Cale to be able to be a kid. I feel like he's never really able to simply "play" - there's always an agenda of what we need to be working on. We already have therapy three days a week and adding occupational therapy will increase that to four days. We had our first session today and so far I feel like it's going to be manageable...I'll keep my fingers crossed!

I feel like I haven't updated you all on Riley! We truly do love our little drama queen and my lack of writing about her is in no way any reflection on the priority she has in our lives, but Riley is so "typical" and doesn't really spark any desire to comment on her daily activities. She's basically doing everything a ten month-old baby should be doing. She eats absolutely anything in sight, including paper, grass, leaves, etc.. Nothing is off limits in her mind. :) She's crawling everywhere and cruising along any piece of furniture she can pull herself up on. She LOVES her brother and despite the fact that he doesn't always reciprocate that love, she enjoys crawling on him, pulling his hair, laying on him, sticking her fingers in his mouth, ears, and nose. They are quite entertaining to watch and every time I see them interacting I am so thankful God gave Cale a sibling. She is so good for Cale and we have already seen many ways in which she is pulling him along. Riley will one day be so proud to know that she is helping her brother without even knowing it. Riley has also found her voice and pretty much does not stop babbling all day long. She says "mama" and "dada" and has mastered the art of happily squealing. She has started to stand on her own for a few seconds at a time but has yet to show any desire to walk on her own. She loves walking with her push-toy but plops down on her little butt the second you try to take it away. It won't be long...

In other news, Cale has been consistently taking about two to three steps independently!!! It is almost surreal to watch since we've literally been waiting for this for over a year now. I'm so proud of him and even if he's never able to fully walk on his own, I will never forget all of the hard work he's accomplished to get to this point.

My mother-in-law and I are driving to Billings at the end of the week to attend the Women of Faith conference. We are going with my mom, aunt, and sister and I am ecstatic!!! I've heard wonderful things about these conferences and since I'm not able to spend a lot of time with just my mom and sister, it will be so wonderful to share this experience with them. Not to mention the two whole days I will be without a child attached to my hip!!! :) Yes!

I will update you on how the conference goes. I'm sure it will be amazing!

God is Good...ALL THE TIME!

This past weekend was quite possibly the worst couple of days I have ever experienced. It ranks right up there with that crisp April day two years ago when Cale was diagnosed with cerebral palsy. Yes, it was indeed that bad. Perhaps April is just not a good month.

Last Thursday I started to notice that Cale wasn't moving around like he usually does. He was slow, weak, and most often would just choose not to move and scream bloody murder instead. He normally crawls all over the place, getting into things he shouldn't be getting into, following his sister wherever she goes, and if nothing else motivates him to move it's a sure bet the offer to read him a book will kick him into high gear. When asked to go and pick out a book, he screamed and screamed...never moving an inch. I panicked.

All of the doctors and therapists we've seen have always been pleased with the fact that Cale continues to progress, albeit slower than normal, he continues to make gains. They always warn Alex and me to take note if he ever loses a skill, and that that would be a sign of concern and to take him to his pediatrician immediately. We watched him closely Thursday night and decided to give it another day to take him in. Friday started out much of the same; he would try to move but would quickly give up and just scream for hours. Finally during lunch, I put him next to a chair and he just slumped over and appeared to not even have the strength to sit up. Through panicked and scared tears, I called his pediatrician and she told us to come in right away.

I remember like it was just yesterday the day we drove to his doctor two years ago. I had a bad feeling about the appointment and so I made a CD full of worship songs, just in case I needed them after we were done. After she had given us the diagnosis, I walked back to the car with my baby boy in my arms, wishing our lives here on earth would be over soon so that we could be in Heaven together. I didn't want to experience the pain that, I thought, was only left for us here on earth. I didn't necessarily want to die but I certainly didn't want to live. Driving to the doctors office this time was much of the same. I tuned the radio to the local Christian station and bawled the entire drive. I was scared, hopeless, and angry with God for allowing yet another terrible situation to effect our family. I walked up the flight of stairs, holding Cale, ready to face the next defining moment that would effect the rest of our lives.

Thankfully, his doctor wasn't ready to diagnose him with the sort of digression I thought he was experiencing. She gave a couple of scenarios and told us to give it through the weekend before we brought him in again. Even though she didn't deliver bad news, I was cautious to believe that we were in the clear. I was still scared, still angry, and playing through all the horrible situations I could think of in my head. Watching and waiting all weekend was going to be torture.

Saturday was probably the worst of the two days. Alex and I were both so scared and couldn't find a way to make peace in our home. We were both angry at God, scared for our little boy whom we loved so much, and uncertain how to deal with the emotions we were feeling. The tension in our home was almost too unbearable to deal with. We spent the day doing everything we could think of to get Cale to move and all of our efforts were met with complete and utter disappointment. I remember putting Cale to bed that night and laying down with my son, tears running down my face while I put my hand on his little head, pleading and praying for God to heal him.

Sunday morning came and Cale still didn't show any signs of being able to move. We got ready for church as usual and I remember driving and telling Alex I wish I had water-proof mascara. I knew the water-works were coming soon. Ironically, our pastor delivered an amazing sermon on suffering. My family was suffering and it was so refreshing to be reminded of God's plan for suffering. I was still angry, though, and not ready to praise God for what He was doing in our lives. I could make sense of God doing something to me, like allowing me to get cancer or something like that, but I just couldn't wrap my mind around why He would allow something so terrible to happen to my little boy. He is so innocent and yet already having to deal with more than I probably have in my entire life. "It's just not fair", is what I thought.

Monday we drove to Helena for an orthopedic appointment that we had scheduled for Cale even before this all started happening. The appointment went surprisingly well, although I was almost hoping for her to see something that was preventing Cale from being able to move around like he once had been able to. His bones looked great, though, and she thought Cale would one day walk even though she couldn't be 100% certain. That was good news - Praise the Lord for good news! We got home and Cale actually started to crawl a little bit. He was admittedly weak and wouldn't go far but at least he was moving! We went about the rest of our night as usual and after we got the kids in their pajamas and ready for bed, we decided to stretch Cale and play the "ping-pong" game, which is just when Alex and I sit about four feet apart and help Cale walk to and from us. Note: he has NEVER taken an independent step while doing this. After about three our four passes between us, Cale miraculously took one step all on his own! Alex and I clapped and screamed and acted like complete idiots, but considering the last few days this was, by far, way more than we could have ever hoped for. Cale was so proud of himself, laughing and giggling during each pass between us. We probably did this for a solid forty-five minutes, keeping the kids way up past their bed time, but we just could not get enough of watching Cale take his very first steps all on his own. He took about ten steps throughout the forty-five minutes we were doing this, at most two at a time, and after we finally put him to bed I had to stay up for at least another hour just to have the adrenaline leave my body.

There are two things I have learned from the last four days. 1. I admit that I am often sad when I think of everything Cale can't do. He can't run around and play like the other kids his age do, but after going through the scare of him possibly not being able to move at all made me incredibly thankful for all that Cale CAN do. He can do a lot and I need to remember we are blessed for his abilities and that things could be a lot worse. 2. God is good...ALL THE TIME. Even though I don't understand the way He works or why He allows the things to happen that He does, His plan is good. He loves Cale more than I do, which is impossible to wrap my mind around, and He is going to use Cale in a way that blows any plan that I have for him out of the water!

I'm still scared and still left wishing I knew what the future holds for our family, but I'm hopeful and reminded that God is faithful.