An unwanted trip down memory lane

Over a week ago, Karsen fell down three concrete stairs. He didn't hit his head, he didn't go unconcience, but I knew right off the bat that something was wrong. He cried the owie cry. He wouldn't even let me lightly touch his foot. So, I took him straight to the ER. After a few X-rays and a lot of time spent in a tiny closed off room, they couldn't find anything. We  were told he might have chipped his growth plate but they just can't see it. We had a follow up scheduled for a few days late with his pediatrician. Over the course of 5 days I was brought straight back to a long year of butt scooting. I felt like we had taken a giant step backwards. At our follow up, our doctor ordered 4 more x-rays. It's hard to figure out where the source of the problem is  when Karsen can't tell us where the pain is on top of having a really high paint tollerance on that side as well. We got the results to those x-rays less than 24hours later. All came back negative, not  any breaks. On one side I'm grateful, no cast. On the flip side, that means we still don't know what is wrong and a break is easy to let heal. Tendons, ligaments, muscles are all complicated when  it comes to Karsen's affected side of his body. We are waiting for the referral paperwork to go through so we can see an orthopedic. My heart breaks for Karsen. Once being able to walk and run all over, now he back to being planted on the ground. I can see it's frustrating him to not be able to walk and keep up with others but I also can see anytime he tries to put weight on it, it hurts. I'm back to doing what I do best, squeaking. I have called three times to get the referral paperwork pushed through sooner. 

In the midst of all this chaos, I've been going through the process of finding a new speech therapist for Karsen. I fired his current one. We just weren't seeing any progress for months. It's time for a change. We toured an afternoon program where he'd get speech therapy twice a week as well as during the class. It's a short 2.5 hour program. We are waiting for our IEP to get the paper work pushed through and start. 

I know some people, myself included, found  it interesting that each person we've seen has never mentioned a communicated device for Karsen, or any other form of communication for him that would be affective and alleviate some of his frustration. With in 5 minutes of talking to the special education teacher at the afternoon program, she immediately asked me if Karsen has ever used one. I'm by no means giving up on Karsen talking and continue to push him  in speech but as time passes I am starting to feel as if we need to find something to fill in the gaps, give  him a voice, show him he too can have a converstation with out waiting years for speech to come. I still haven't decided how I feel about introducing a communicative device, I think it's easy for me to not read too much into it since it's clear we aren't giving up on him talking. There's a part of me, deep down, that feels he may never talk, and that's quite ok. What ever His plan is for my little man is perfect, I just want him to have a way to be present, more than just phyiscally.

At my bible study group I went to yesterday, there was a segment where we had to repeat after the speaker (Beth Moore), saying "I am not in control" along with a series of other statments that all covered the same thing, we don't have control of our lives, we never will. This is one of many constant reminders of that. God has control over this situation. He's got my back, He's got Karsen's. I need to be leaning on Him more. It's so easy to be caught up in the craziness of your life thinking that YOU can figure out how to decompress, destress, unwind, when there's always only one answer. God.

Hoping and praying

When I went to put a title for this post it took me a while. It's hard for me to sum up what's been going on. It seems like whenever things are too mellow something has to throw it off. So, hoping and praying it is. We are now in the throw off point of our journey again. Karsen had an appointment with his pediatrician just to check in on weight and see how he was doing. Super simple easy appointment. Well, in the past two weeks Karsen has lost one pound. I know that may not seem like much but for a 30 pound 3 year old, losing a total of 2.5 pounds in 3ish  months is not good at all. It started when he started taking his seizure meds. I'm 99% sure that's the problem but to be safe we are taking some stool samples and sending them off to see if there is any other issues we don't yet know about. If we can't find anything then we get sent to a new epileptic specialist (thank goodness, I hated our old one) to look into other seizure meds that aren't as common. The reason for this is the other two that are more common that most neurologists, ours in particular, know the side effects for are pretty harsh. We need to find a med that is just right for Karsen which may take a while. The good part is we haven't seen any seizures but the weight loss is not something we can ignore or be ok with. 

On top of dealing with that, Karsen started walking way different than he usually does. He has always walked with a slight limp but not very noticable, at least I think  it isn't that noticeable. On Monday his left foot was turned slightly outward, yesterday it was worse and he also seemed to not want to be on it as much, Stairs, which are pretty effortless for him, seem to be more of a struggle now. Thankfully we  already had an appointment with his ortho and his PT at the same time so I was able to bring it up. We aren't 100% sure what's going on, but if we were to guess it seems like he's hitting a growth spurt which is causing him to have more spasticity than usual. So, we are watching to make sure it doesn't get worse and going to address it if it continues for the next few weeks. It's been a bit of a stressful week so far, with a few more appointments than normal. I'm ready for the weekend, I'm ready to relax a bit and not have to worry about calling any doctors.  That's the nice part about  weekends, doctors offices are not open so I can shut that part of my brain off for a few days. It always seems that's when you need them the most though huh? Right after closing, over the weekend or on a holiday that always seems to land you in the ER for something that is usually fixed by some antibiotic. Anyways, like I said, I'm hoping and praying that we can get on the right track, Karsen will start gaining weight, seizures will stay away, his gait will return to what it was, and he'll start sleeping in past 4am (for the love of God, please sleep until at least 5....mama is getting a bit worn down). 

In the midst of all these challenges I cling tight to God, and know that we are loved and taken care of. I have no doubt He is here with us. He has a plan for my sweet boy, a plan that is bigger than I could ever imagine. 

Three years ago

This year I was really hoping that this particular date, February 14th, would come and go with out me even noticing. No such luck. As the date approaches I catch myself looking back and the past three years. It still stings to remember that day, Do you know what day I'm talking about? I'm talking about one of the worst days, the day we received the news Karsen had cerebral palsy. There are moments when it seems like yesterday and then there are moments where it seems like a life time ago. We have come so far. We've had some amazing moments and many hard pills to swallow. Things I am grateful that we didn't know until the time came. I think that had someone told me that day all of what we would have to endure the next three years it would have been too much. Blissful ignorance the first month of diagnosis, that's what Kuper and I were living. "Just a little PT and he'll catch up. No big deal". Little did we know that he would have to live with a handicap for the rest of his life. I've been told and also have told  others that no two kids with cerebral palsy are the same. I still have to remind myself this. As much as I would love to hear a story about a child with CP that didn't talk until 6 but DID talk eventually, that just may not be in the books for us, and that's ok. I've really been able to come to a place of acceptance, this is the life I will live. Whatever course God puts me on, that's where I'll go. So three years ago today was when I started to believe something wasn't quite right with Karsen, God was preparing me, holding me, for what was about to come. I continue to stay there, being held my God, guided through all of this. I don't know what the future holds for Karsen and that is plain OK with me.

So, while last year, this time of year was a rough time for me, this year is a bit easier. I figure each year I will be less shaken and eventually maybe the date will pass with out me even realizing. (Although I'm not sure if that's possible since it's a widely known holiday.) So while you are eating chocolates from a heart shaped box or smelling your flowers from your loved one, or drinking a bottle of wine to yourself please say a little prayer that each year this day will get easier and easier.

Three years ago, today.

One of those days.... again

I seem to keep having one of those days. You know, the ones where you are counting down the minutes until the kids are in bed. They seems to happen more and more frequent. Today I felt run down, physically and emotionally. I've delt with more tantrums today than I have in the past three days. I got head butted four times, one of which was direct contact to my nose, kicked a handful of times, and hit so many times I can't keep count. I've gotten fairly good at dodging, but not good enough. I hate that I have to be good at dodging. This part of parenting, this part of dealing with a non verbal three year old, is no joke. While the hubby was stuck at work late, and my will to fight started to fade, I texted my bestie. She listened, I vented, I vomited all sorts of horrible words all over our feed. After I had my pitty party, which she always alows me to have, she helped pick me back up. It wasn't all I needed to pull myself togethger, but it was a big step in the right direction. 

Don't get me wrong, being Karsen's mom is a huge blessing,  but I'd be lying if I said I wouldn't change a thing. This isn't my plan, it never was. I had a much different path planned, with much different outcomes. Even though I have questioned God's plan constantly and still do quite often, I know that I am where am I suppose to be. I have met so many amazing people because  of Karsen. I see life through a different light, a way that wouldn't have been possible with out Karsen. This road has gotten me some beautiful places, I've also seen some ugly, and has never been straight and smooth.  While I'd love to sit here and say that I take in each day as a blessing,  I can't. I am human, I am flawed, I have a hard time seeing the beauty in such ugly moments and that is just ok. So, while today left me feeling worn down and exhausted, tomorrow is a new day. 

I'm thankful for the support I have gotten in these frequent rough days and continue to pray for patience and guidance with Karsen (and Karter). 

I told my friend not too long ago, when she was having one of those weeks, that God wants us on our knees because He knows that's when we'll lean on him. Truth people. So here I am, on my knees, been here for three years and have held on for this beautifully ugly ride.