The Climb

"The Climb" by Miley Cyrus was the first song I picked when I started this blog. It was popular around the time we started quite the climb ourselves. (If you haven't listened to the song recently, check it out before you read this.) Now I'm not the biggest Miley Cyrus fan, but this song really got me. With Spencer's condition and the seemingly uphill climb, I feel like I could have written the song myself. Each verse seemed to speak to a different emotion I was feeling early on. Like the verse, "Every step I'm taking, every move I make feels lost with no direction, my faith is shaken", definitely described those first few days after Spencer's diagnosis. It was hard to even put one foot in front of the other walking out of the hospital that first day. I'm a very private person, but I didn't care, couldn't care that I was walking through the Cleveland Clinic bawling like a baby. I could hardly stand or think straight, but then I looked at Spencer's sweet face. Maybe it was then and there I decided it wasn't about what was on "the other side", it was about "the climb". Knowing that climb included my precious Spence made it okay.

"The struggles I'm facin', the chances I'm takin', sometimes might knock me down, but no I'm not breaking. I may not know it, but these are the moments I'm going to remember most." And it's true every milestone Spencer has reached is so etched in my mind. Maybe because it's been the start of his "climb". He has to work a little harder than the average kid and it makes everything a little more special. And "these" moments seem to be the ones defining me and making me a better person than I would have been without them.

"There's always gonna be another mountain, I'm always gonna wanna make it move, always gonna be an uphill battle. Sometimes I'm gonna have to lose." Spencer is just a year, yet I know this may be the line that best describes things truthfully. It IS going to be an uphill battle for him, there IS always going to be another mountain and sometimes he IS going to lose. But the verse I want to define him is this "Ain't about how fast I get there, it ain't about what's waiting on the other side, it's the climb. Keep on movin', keep climbin', keep the faith. It's all about the climb." Being a mom to Spence has taught me to not always look to what's on the other side of the mountain, but to enjoy the climb. The climb is often times the best part of life. If you don't enjoy it, you might miss the beauty along the way.

Beautiful music

The other night (lame as we are) my hubby Scott and I were listening to some beautiful stringed music on PBS. Scott made a comment that struck a chord deep within me. He said, "An instrument in the hands of the right person can be a beautiful thing, but put it in the wrong hands and watch out!".

Wow did that statement make me think. Now he said it with no deep meaning behind it, but it made me instantly apply it to so many areas of my life. First of all, it made me think of my children. They are truly like instruments given to us. If we do the right things with them they too can "play beautiful music". But in the wrong hands kids have a hard time playing the right notes. When we are given our children they are a perfect, unblemished instrument. We immediately begin to "practice" out of sheer force and fear. There are plenty of off notes at first, but then we seem to hit our stride as parents. Like even the best musicians we play off key at times, but all and all we do pretty well because we have put the needed time and effort in to it.

Then, just as we have begun to master one instrument, we are often handed another. And usually not an instrument similar to what we have already played, but one that may be more difficult or need to be played in a much different way. Occasionally, we get an instrument that is easier than the one we learned to play at first and we count our blessings!!

I believe that it's our job as parents to make sure we "practice" everyday and not to slack off. Like Scott said, "an instrument in the right hands can make beautiful music". I believe anyone's hands can be the right hands. Like I've said before it's all a matter of choice. So, we have to put time and effort into our kids, even when it's tough.

I wish I could say that kids are an instrument that we as parents could master, but it seems just when we start to get good we are handed harder music! I do know one thing- though parenting kids can have plenty of off notes, the beautiful symphony we get most of the time makes it all worth it!!

Choices

Though we are still new to the game of having a "special needs" child, I've already heard a few comments pretty consistently. They all have the same theme and go something like this, "God must have chose you to be Spencer's family because he knew you could handle it" or "Spence was meant to be in your family because you're such wonderful, loving people" or "God knew what he was doing sending Spence to your family".

Now don't get me wrong the compliments are wonderful! I'm glad people think so much of my family and believe that Spencer is going to be alright just because of the enviroment we are creating for him, BUT I've noticed a little flaw in the system. Many times when I am away from home I see children with varying special needs who were "given" to moms and dads who aren't so wonderful and aren't handling the situation so hot. There are plenty of people out there who I'd like to just smack because they aren't taking care of their kids the way they ought to. Did God mess up that time? I don't think so, but I think the parents definitely are missing a wonderful opportunity.

I don't believe that God made a mistake by giving us Spencer or by giving any other family a kid who is a little more needy than the rest. But I also don't believe that God chose me because I'm some amazing, super mom. What I believe is that I wake up everyday with a choice. A choice that every other mom can choose to make too. I choose to be the mom that Spencer needs be to me. I choose to go the extra mile and make sure all of his needs are going to be taken care of whether financial, medical or emotional. I chose to put aside some of my needs to care for his. I choose to believe that God did "send" us Spencer, but not because he needed us, but because we needed him. I choose to believe that the day Spencer was created was one of God's better days.

So, thanks for the compliments, but I'm not that great, I'm just a mom who wakes up with the same choice every other mom has each day. We all have choices and we all get thrown a curve ball every now and then. I've just decided I'm going to hit that ball out of the park instead of striking out.

Remembering my priorities

It's been a long, tough week. So long and tough that I think I could just end the blog post there and go crawl in bed. I watched my grandma pass away this week. Now that was tough. I saw her lying there in a body that didn't look like hers anymore and with a mind that was no longer there. Then a little boy named Connor, that has achondroplasia like Spence, died from complications of the condition. It brought back all those emotions I had when we came so close to losing Spencer. And to top off an emotional week, my sister moved over an hour away from us.

But I'm the type of person that always has to find meaning in it all. For me this week has meant putting my priorities in check...something I am continually having to do. I was reminded again this week that life is short and life is precious. So, I put a lot of things on hold this week to spend time with my family and to try and be there for my parents after losing my grandmother. I held Spence a little tighter and thanked God for allowing him to stay with us. In fact, I held all of the kids a little closer this week. I tried to say "not now" or "maybe later" a little less. So, my "to do" list didn't get done and I played more Monopoly games than another mother should ever have to, but it was probably the closest I've come to having my priorities in check in a long time.

Life is constantly trying to get in the way of what really matters. I know that every day I wake up with choices. Choices about who's going to get my time and energy. Everyday I have to find a balance. Time for the kids, time for me, time to keep the house clean without being too OCD and, of course, balancing all the things other people ask of me without sacrificing family.

I guess basically I'm saying that I'm just a work in progress and that we all probably need to check our priorities from time to time. Whoever said "stop and smell the roses" was probably on to something. So, quit reading this blog and go hug your babies or your hubby or literally go smell the roses. Life is short, might as well make the most of it!

Just feelings...

Yesterday was a rather weird day for me emotionally. Most of the time I don't feel bad about Spencer's condition, but every now and then I get a little twinge of sadness. A friend had posted a link to a blog about a baby with a serious heart condition. He has been sick since birth and there is no guarantee he will make it. Things were very touch and go for him yesterday. Crazy as it may sound those are the things that make me thank God that Spencer "only" has dwarfism. I mean really it could be so much worse. Yes, we almost lost Spence last month because of his foramen magnum compression and there will no doubt be more medical complications, but Spencer is going to be okay. That's what I have to cling to. My little guy really is going to be alright.

But at the same time it can be tough. Little things seem to slap me in the face. We were swimming at the YMCA last night and there was a little girl the same age as Spence. The same age mind you and she was standing there (with her daddy's help of course) and jumping into the pool. But little Spencer can't even bear any weight on his legs, not even for a minute, because of his hypotonia. He'll get there someday, but it's gonna be a while. I don't know why exactly, but it made me sad that Spence wasn't able to do it, too. With that big personality and big spirit, his body still denied him. It was no big deal really, right? So what if she could stand there and Spence couldn't. But there was something melancholy about it for me and I remind myself that it's okay to feel that way. They're just feelings and I will NOT expect myself to be Prozac happy that he has dwarfism. But I am deep down in the very depths of my soul happy we have Spencer in our lives, no Prozac needed thank you.

Cowboy boots, strut what ya got...

Letting your kids be who they are can be tough, especially when it's the polar opposite of who you are. I'll be the first to admit that this is a challenge for me. The first time I remember really giving in was when the twins were about two. They had gotten cowboy boots as a birthday gift and they were in LOVE. Well, let's just say I'm not a cowboy boots kind of girl. I'm more the high heels type, if you know what I mean. I vividly remember how much I hated those boots!! But the first time I gave in and let them wear them out somewhere was a life changer. Watching them strut around in those boots with their little girlie dress no less, melted my heart!

And with five kids God is constantly finding new was to stretch me in this area. Take my nine year old for instance who loves his 30+ stuffed animals. He is seriously pushing my anti-clutter buttons-hard!! Then there's the girls who love garage sale knicknacks. A gene they definitely did not get from me. Last, but not least is Jordan. My beautiful, baby girl who loves to dress like Punky Brewster (remember the old tv show?) A typical Jordan ensemble might be a crazy printed dress, mismatched striped tights that clash, of course with her ladybug mud boots, topped off with about 10 pieces of jewelry and her orange hat. I've learned to shrug off the funny looks at the grocery store. I know they are wondering if I was the one who dressed her like that.

As different as they are though, I'm also reminded of the pieces of me they have in them, too. I catch Jake with his nose in a book and smile knowing I'd be doing the same thing if I could. Genna who loves everything organized, yep me again! Grace who cries along with me watching sappy movies or listening to tender songs. Then there's Spencer who would eat all day if he could-definitely inherited from me!! My kids are a mix of old and new and I wouldn't have it any other way! I've realized that God made them each unique in so many ways and I'm not about to be the one to put out the fire!

So, here are the rest of the details of our scare with Spencer. After the code was called we were taken to the ER. Spencer had "come to", but was still not himself. I just wanted to see him smile and then I would know he was okay. He is such a charmer and ALWAYS smiling. So, to see him lying there so lethargic was very, very hard.

They decided to do the some basic, routine tests-blood work, x-ray to check for pneumonia, and a nasal swab for RSV. We were almost immediately told that Spencer had an ALTE (an apparent life threatening event). I was nauseous hearing that Spence had something happen that had quote "threatened his life". In the meantime, they called over to the Skeletal Dysplaisa Center where was Spencer was scheduled for an appointment. The specialists there had a pretty good idea of what had happened. It seems many kids with Spencer's form of dwarfism have something called Foramen Magnum Compression or in simpler terms his skull was pinching off his spinal cord. Apparently 2-5% of babies die from this complication. It's still difficult to think we almost lost him right there in the parking garage.

We weren't in the ER long before they decided to move us to a room for the night. Spencer would have an MRI in the morning to confirm that he had the compression. By that night Spencer was pretty much back to himself, except with a lot of extras wires and monitors!!

Spencer slept pretty well that night, but mom and dad were another story! I don't think Scott and I slept at all that night. Every time a monitor beeped we practically knocked each other over getting to his crib.

Because of the MRI Spencer couldn't nurse after midnight and it was really hard for him. He was such a trooper and really hung in there! The MRI in and of itself was nerve racking. He would have to be put under for it and from what I had already read little people (lp's) need managed more during general anesthesia. One more thing to worry about!

It seemed like an eternity that he was gone during the MRI, but he came through it just great! He was so sweet when he woke up! What a trooper!!

We waited anxiously for the doctor to come in and tell us the results. Finally, the doc came in and asked us to come out to the nurses desk so he could show us the images from the MRI on the computer. Well, you didn't have to be a rocket scientist (or even a doctor-lol) to see right where his skull was pinching his spinal cord. He would need surgery, as soon as possible, to decompress the area. Basically, they would have to open him up from the base of the skull along the spine and remove the part of the skull pinching his spinal cord.

Needless to say, we would not be going home anytime soon. It was Friday and the soonest they could schedule the surgery for was Tuesday. It was going to take a major team of people for this surgery and that was the earliest they could get them assembled. So, until then Spence would have to be constantly monitored and we would have to pray he did not have another episode.

It was a long, uneventful next 4 days. We saw various doctors, including a few we had been scheduled to see that fateful Thursday. Spencer had x-rays called a Skeletal Survey and bloodwork done to see if he had the common mutation that caused his type of dwarfism.

I also learned that I was my child's advocate. So, whatever it took to get him the best care possible I was going to do it. I learned Spencer was a "hard stick" and to ask for the MedFlight/transport team to do any bloodwork and IV's. I learned that it was okay to ask the nurses to wait to do vitals when Spencer was nursing. I learned being an advocate meant not sleep much!

The day of Spencer's decompression surgery came and I had a great sense of peace. Don't get me wrong I was still anxious, but I knew we literally had hundreds, if not thousands, of people praying for him from coast to coast.

It was so hard to hand him over to the nurses in anesthesia though. After all we'd been through I guess I was scared to let him go. My awesome parents were there by our side and suggested we go to the cafeteria and try to relax. The funniest thing happened on the way there. We are rounding the corner and I see the neurosurgeon walking out of the cafeteria with a cup of coffee in hand! I'm thinking, "hey my kid is in surgery, aren't you suppose to be there too??!!" But it was weirdly reassuring that to us what was major surgery was no big deal to him.

So, here is the rest of our stay in a nutshell. The surgery went perfectly! The neurosurgeon's wonderful (and I do mean WONDERFUL!) nurse Renee said it couldn't have went any better. I told her that was because we had so many people praying and she said she knew that without me even telling her! I thought that was so amazing!! More amazing yet was that Spencer never cried after his surgery. We would fuss a little when we got hungry, but that was it. All the nurses commented that he was the calmest, best baby they'd ever seen. He could not have handled it any better. I know he handled it better than I would have!!

Three days later we were sent home! I'll admit it was little scary to leave the safety of the hospital. We'd had such a scare and I was operating on a serious lack of sleep, but I was so happy that our little guy was okay. One of the major hurdles of his condition was already down. It was hard to believe we'd only learned of his condition just 3 weeks earlier and he'd already been through so much.