Our journey through life with hemiplegic cerebral palsy and infantile spasms

Friday, September 28, 2012

I should learn

I've said this before, but I'll say it again.... Every time I feel like Karsen is stuck at a stand still he does something to prove me wrong. I felt, and so did his OT, that Karsen would never move around on his stomach (crawl, army crawl, that sort of thing). Well, serves me right to say something like that. This morning my little man proved me and everyone else wrong AGAIN. When will I learn? ha I put Karsen on the floor after his nap this morning, on his back. He typically doesn't tolerate being on his back ever since he was able to sit up, that was his position of choice. Karter, being the true big brother, moved all of Karsen's toys just out of reach for him so he couldn't get them. Oh siblings... lol I can't help but think my sister had to have done that to me at some point. Well, I heard Karsen complaining a bit and then looked over and he's scooting himself with his legs, and a little with his right arm, slowly creeping toward the toys that eventually were no longer out of reach. OH MY GOSH! I wanted to jump up and down. Well, actually I think I may have. Wouldn't you? Not only did he do it that once (usually he will do something new once and take another month to do it again.) He did it three other times. I immediately picked up the phone to tell Kuper. It brought tears to my eyes to hear my husbands mutual excitement and also hearing Karter tell Karsen "Go Karsen! You can do it. I know you can.".  *tears* I'm so blessed to have these boys in my life. Good job little man! I can't wait for Mary Beth to get here today so I can show her. I know she'll be just as excited. I tried to get it on video but of course my phone was dead and so is the camcorder. Perfect. Oh well. I'll be trying to get it on video the next couple of days. Riding on my milestone high over here. 
Some sensory fun in pudding
**Therapy tip: it's always good to encourage play in different textures. Very good sensory exposure. I have to let go of my OCD to keep Karsen clean and just let him have fun in it. We also have a noodle bin, a rice bin, and a bean bin. You always have to be present when letting them play in the sensory bins. They are all pretty much a choking hazard. So, keep a close watch and make sure nothing goes in their mouth. I will put measuring cups in, funnels, anything fun to dump stuff in or out of.(Note* this is good for all babies/toddlers. Not just special needs kiddos. Karter loves playing in the bins with Karsen. So make a sensory bin, and let your kiddos have fun) Soon, I'm going to be trying a combined sensory bin, some big chunky things, small soft things all combined in one bin. 

I had someone fill out my questions and suggested I write about my therapy stuff for Karsen. It's funny because I asked a fellow blogger to do the same thing but didn't think to do it myself. Silly. So, I'm going to start putting in more therapy exercises and possibly video tape some of it too (if my camera isn't dead, lol). I would love more suggestions. What are you searching for in my blog? What brought you here? What's keeping you here?



Thursday, September 27, 2012

Wednesday fun day

Yesterday was a much needed break from the every day life. Got my 6 mile run it, went for a walk with some friends I haven't gotten to spend time with, and then hit up apple hill with my long time friend and just relaxed. Boy was it nice. I seriously recommend you take a break form you routine to just have some flat out fun. 

 Mmmmm... that's a good apple donut


Finishing up the day with some bath time fun with Daddy.
What was your fun break from routine?

Wednesday, September 26, 2012

Date is set

While out on our day of fun today (the boys are both napping right now), I got an email from our neuro. We have a date for our 24-48 hour EEG for the 9th. Unfortunately Kuper wont be able to take time off work so I will be going down by myself. I was prepared for this so I'm just going to have to stock pile myself with some good reading books. Any suggestions? I'm in the works of trying to arrange for someone to take Karter during the day while Kuper is at work on both Monday and Tuesday. I just have to say, I have some amazing people in my life. And to all you single working moms out there, you guys work your booties off! I think my husband is going to get a little taste of what it would be like. I'm grateful we are getting in for the EEG fairly fast, I'm not quite sure how long it will take to get the results from it, I'll find out more the closer the date gets. Thank you all for your prayers. Keeping this one short and sweet so I can go have more fun with my boys.

Break

Today, I decided to cancel Karsen PT appointment. Don't worry I planned on cancelling it so I had it cancelled about two weeks ago. Today we will be going to play with friend, while I go for my 6 mile run with my friend. Then after, heading off to the bike trail to have some much needed girl time and go for a walk. I will definitely be getting my cardio in today. I feel it's important to take a break from time to time, even if it's just for one day. I know I could use some fun and I know my boys can too. So today.... today is all about fun. Oh and of course sneak in an annoying phone call if I don't hear from the EEG tech by noon. ;-) Laundry can wait, the floor can be moped tomorrow, and one more day for the diaper laundry to sit isn't the end of the world. I need to tell myself that more often. I love a clean, spotless, good smelling house, but I love making memories more. Heck, maybe I'll take the boys to apple hill after their nap. And today? Today I am not going to give myself a guilt trip about not doing enough therapy with Karsen. Don't get me wrong, I know at some point I will be able to squeeze in a small session here and there but that's not my focus today. Today my focus is to love on my boys and have fun and not stress. What will you be doing today? Whatever it may be, don't give yourself a guilt trip about not doing the other. Life is too short, and precious. Live in today. Soak up the fun!
Karsen testing out our new stroller while brother was napping. 

Tuesday, September 25, 2012

you, you, you

I found this on one of the blogs I follow and thought it would be a fun way for me to see who is following me and all the fun info. So just copy and past these questions into a comment and answer away. 


1. Who are you?  

2. Do you blog, too? Leave me your link!  I want to follow you! (if I don't already)

 3. Do you remember how you found my blog? A link-up? Another blog?

4. How long have you been reading?

5. What keeps you coming back to my blog?
6. What would you like to see me blog about more?

7. What is something we have in common?

8. Tell me a fun fact about yourself!

I'm dying to hear about you. ;-)

Monday, September 24, 2012

Wait to make an appointment

I finally heard back from Karsen's neuro today (thanks to me, the squeaky wheel). After a few conversations and a few back and forth emails I think our neuro's nurse practitioner understood that I wasn't going to back down. The plan is to get Karsen in for an in patient video EEG. I believe it will be for 24-48 hours, maybe more if needed. We would have set up the appointment already but the expert in charge of the video EEG's is out until Wednesday. So, we wait... to schedule an appointment. That seems quite stupid to me but, in true squeaky wheel form, I will be calling first thing Wednesday morning... Ok, maybe I'll cut her a break and wait until mid day on Wednesday ;-).  I'm glad we'll be getting some answers soon but quite sad that I'll most likely have to be away from Karter while Karsen is in the hospital, not to mention Kuper too. :-(  Ready to get this all moving. I don't know if you haven't noticed, but I'm not a patient person, especially when it comes to my kids. So, here I shall sit and keep praying and waiting... and squeaking ;-) Thanks for all the prayers.
In the mean time, Mary Beth and I tried out Kinesio taping. It's the taping you probably saw on all the Olympians. We tried it out on Karsen's arm to help him to release it a bit and not be so tense. He actually was using his arm for weight baring a lot more than he did with out. Check out this side sitting shot with both hands in front, weight baring. This never happens. The blue tape on his left arm is the kinesio tape.

Friday, September 21, 2012

Waiting and praying

For the past copuple of weeks, Kuper and I have been feeling like Karsen isn't progressing as fast as he should. I ignored it and chalked it up to being impatient, and each child with cp moves at their own pace. Today, we had our usual OT session with my now close friend, Mary Beth. We started talking and I proceeded to tell her how I was pushing to get a 24 hour EEG for Karsen. When I said that, I opened a whole can of worms. She had been feeling the same way as I did about Karsen's progression. She also talked to the people that see Karsen at play group therapy and they agreed. I'm so grateful for Mary Beth, I feel she cares as much about Karsen as I do. We both agreed something isn't right. The research I have been doing in infantile spasms and their return and the change into other seizures set the pace for my panic. I hopped on the phone while Mary Beth was still here to call our neuro and tell her I'm 99% sure there is seizure activity and his OT, PT, and I believe it to be a serious problem. So, here I am, waiting.... and on my knees praying. Praying for a fast call back, praying for the protection of my sweet boy. I'm trying to not jump the gun, but something needs to happen. As I've told people before, but apparently don't listen to what I say myself, a mothers intuition will beat any doctors degree. So, here I am. The squeaky wheel is back. If I don't hear from our neuro by 4:00PM I'm am calling her back again, and pushing hard. I know she's busy, but after my discussion with Mary Beth and what Karsen's other PT's said this is urgent, this needs immediate attention. So, please pray for Karsen, pray for speedy service, and please pray for me. I know God has control on this. I just need to keep reminding myself that. 

Tuesday, September 18, 2012

Moving along

Just when I was starting to feel like Karsen was stuck.... I should really stop feeling that way. When I do, he proves me wrong just a few days later. I was in the kitchen working on my apple butter and heard a crash of cars dumped on the ground. This is not a new sound to me. If you have a toddler like mine, he loves to dump out his box of toys, my perfectly organized toy area... ha ha. So, I just assumed it was Karter playing with his toys, especially because I put Karsen near an area of toys that was a good 4 feet away from the shelf of toys. Suddenly the cars were smacking into each other, clearly being hit around by Karsen and not Karter. Low and behold, Karsen had scooted himself all the way to the shelf to knock down the box of cars. I was shocked. So what did I do? Clean up the cars and move the box just out of reach for Karsen until he reached it and knocked it over. It did this over and over again until he had moved another 4 feet. Obviously it takes him some time to get to where he's going and he really has to want to get to it. The whole time I was trying to get him to get the cars he was screaming at me. Smart little stinker. He knew exactly what I was doing, and each time I would move it further he would look at me calmly, scream, kick his foot two or three times and then proceed to move toward it. I couldn't help but laugh and feel sad for him all at the same time. I feel bad that he has to try so hard for something that's so easy for kids his age. I also feel bad I have to let him crank it out and listen to him get so frustrated, but I am SO proud of him! His hard work is paying off, I just hope he realizes it. Woo hoo! We have a mover! Go, Karsen, Go!!!!! We've been working on standing and getting up and down, well, of course why just butt scoot in one day? Let's just try to pull ourself to standing! Geez kid! One thing at a time! He was trying so hard to pull himself up with his one arm, I had to help him but he got it with my help. Today has been a big day in Karsen ville.
I'm one seriously proud mama over here!

Worry wart

Worry wart. It's such an ugly name, but maybe that's why it's ugly. Who really wants to be a worry wart? I don't! Am I? Well, I hate to say it, but yes. When you have a special needs child, and that goes for a child that might just have medical problems, I don't think the worry wart in you ever goes away. It may have its moments of fadding away and moments of shinning bright, but it will always be there. I think as just a mom in general we do that, special needs or not. Every worry is different from each person. For example; my oldest I'm always worrying if he is using good manners, if he throws a fit at preschool, it he is drinking enough fluids. I know, silly, right?! But we do it. Karsen, my latest (yes, I said latest because it is always changing) is the seizures. I recently found that even though you may think your child is seizure free (nothing noticeable) they may in fact still be having those seizures. Grrr! Ok, I've got eyes in the back of my head, side of my head, on my butt, on my feet... you name it, they are there. Kuper and I have been pushing to get Karsen in for a 24 hour EEG rather than a one hour EEG before we take him off his last med he's on. Upon my recent finding, I could not press for this matter any less. I've been a little worried (ok, a lot) that when Karsen has his moments of seeming dazed and confused that his seizures are back. Even though a neuro's naked eye might say he's fine, a mothers intuition can't beat a doctors knowledge. I'm waiting to hear back for our neuro today. I have emailed her already, to no surprise, she already got back to me but was saying we should just schedule a one hour EEG. I emailed her back going into further detail why I wanted a 24 hour instead. Of course I don't want to put Karsen through 24 hours of this but I've felt he really needs it. 
In other news, today Karsen and I got to go for a walk with two of our new friends that we have made through Karsen's group therapy class. Cassidy and her super cute little girl, Ayla. Ayla is just a few months older than Karsen and about the same track in motor skills, maybe a tad bit a head. I'm so happy to have met them both. Some of you know I have a friend with a little girl that is just two weeks younger than Karsen and has hemi cp as well. These friendships have helped me grow and heal to know that what I am feeling and dealing with are normal. They are an amazing outlet. Do you have any special needs mommy friends? Play group was nice and quite today. Just Ayla, Karsen and one other little one. I love it when it's that quite. I think Karsen and I both get a little overwhelmed when it gets loud and crowded. I use to think I handled crowds well, but the older I get the more I find I can't... ha. Maybe it's old age. I swear these kids have made me age an extra 10 years. 
I couldn't help but feel so blessed today. (Not that I'm not other days) I'm blessed that I can stay home with my boys, that my husband is a hard working dedicated husband, and father, that we have a roof over our heads we can call ours, we have two (ok 4 actually, we have a problem;-) running cars, and two beautiful perfect boys that will forever keep me on my toes and keep me worrying. *sigh* What a beautiful life.

Karsen and miss Ayla at play group therapy today. 

Monday, September 17, 2012

Wow

After my last post, I was overwhelmed with the amount of support and loving comments/fb messages/text messages from so many great people. I'm so blessed to have you all in my life. As always it took me a couple of days to process that particular day. One thing my husband has constantly pointed out to me, when ever I'm feeling like Karsen is so far behind, how many of the other kids had seizures that stopped them from learning thing? He's so right. I started to look a little too much and what age other hemi kids started scooting/crawling/walking/talking, in the midst I failed to remember that Karsen's combined condition is unlike any other hemi kid. It was as if 5 month of his life put his brain on pause. I keep having to remind myself that years from now it's just not going to matter when he scoots/crawls/walks/talks. It really doesn't matter now. So, back to one day at a time. Karsen's ophthalmology appointment is closing in. For whatever reason I'm really anxious about it. I just want to make sure everything is ok, and would really love to avoid surgery. I'm also trying to get Karsen if for his EEG hopefully the same time that we are down there. I'll be calling our neuro today to see if there is any strings she can pull and how she feels about it. Both Kuper and I agree (and the neuro) that it would be best if Karsen could be med free to develop his brain with out meds. So that is the goal. Get him in for an EEG (I'm hoping a 24 hour one to make sure we're covering all of it) to clear him to stop taking his last final drug. I'm curious to see what the drug had been causing as far as side affects. I have no clue if the drooling is a side affect but boy and I hoping it is. Since Karsen has had such a struggle with feeding I'm wondering if part of it is halting that development. Curious.... On the up side, Karsen is standing really strong. He has zero balance while doing it but he's actively standing with out locking out either legs and the best part is his feet are both flat! If you don't know already, cp kids have the tendency to stand/walk on their toes. Because Karsen isn't toe standing there is a good chance we can put off him needing an AFO (ankle foot orthopedic) . That's it for the updating. Thank you again for all the sweet messages from you all. You all make my day a little brighter.



Friday, September 14, 2012

Am I enough

Karsen had his evaluation today with his team of home educators. They have them every six months to go over the past goals, weather or not he's reached them, and set up new goals for the next six months. He met a little over half of the goals we had made 6 months ago. He's not doing as good as hoped as far as eating and feeding himself, holding a drink, that sort of thing. Some of the goals from last 6 months got pushed into the next 6 months. When I told his "team" that I hold on to the fact that each cp kid moves at their own pace, and Karsen's cognitive is still in tact, one of them told me "if you ever need counseling, we have that available for you" I couldn't help but start crying. Am I that much of a mess that I need counseling? Not that there is anything wrong with it, it's great and I think it's amazing they offer that. But am I throwing off some vibe telling you I don't have it together? That I'm having a hard time? That I'm struggling? That I feel like I'm not enough? I know God will never give me anything I can't handle, but sometimes I wish he didn't think I was so strong. As I broke down into tears, in front of everyone, I immediately felt inadequate. I felt like I'm not pushing Karsen enough in certain areas, am I not massaging him enough, am I not stretching him enough, am I not spending enough time with Karter? Am I not spending enough time playing with both my boys together? am I not enough? I shouldn't be falling apart like this. I should have it all together by now. I should have the mom of a special needs child and mom of a 3 year old down.  But the fact is I don't. and the simple truth is there is no harm in admitting that. I'm am flawed and imperfect. As I sit here typing this right, I still am crying. Am I enough? Yes, I am. It's that simple. God chose me to take care of his precious children. I am it, there is no mistake. Some days will be harder than others, some days will be a breeze and some days incredible difficult. I've been telling myself  one day at a time. But today I need to tell my self one hour at a time. So, weather you're a mom of a special needs child or just a mom of crazy children like my three year old, remember you were chosen to be your child's mom. There was no fluke, no chance, it was purposeful. You are enough. You will always be enough. 

Monday, September 10, 2012

Infantile Spasms

I've been putting off putting this up on my blog. Not because I didn't want people to see it, I actually want people to see it that are clueless and wondering if their baby has the same thing, it's just a hard thing to watch since I know what it was doing to my little mans brain. Ok, keeping you out of the loop, so let me bring you in. I've been reading a lot of posts on the facebook group I'm a part of, the group is mothers of infant stroke survivors  It's been such a great resource for me and I'm sure so many others. Well the post I seem to be reading the most about lately is infantile spasms and what do they look like. Like I said, I've been meaning to put this video up in my blog but it's been hard to bring me to it. When I was going through the first weeks of finding out about Karsen's stroke I happened to stumble upon a blog that helped me tremendously. I was determined, when I started my blog, to help other people as well. You can feel so lost, alone, and overwhelmed when you get the news your baby suffered a stroke. I feel I've done an OK job of informing people on Karsen's cp but I havent' touched on his IS much. So, with that said here is a video that Kuper shot for me while I was holding Karsen. 


This was the start of the IS. I believe they had been happening for almost a month by the time we realized it was something to be worried about. I couldn't express how important it is to know that each child's IS looks different. That's why we weren't sure if Karsen had it or not. His eyes never rolled back like all the other videos we had watched. As you can see his are pretty subtle. If you're even having a hard time spotting it, he has a few of his "spasms" in each clip. His arms go forward and up and his head lunges forward. I also notice he seemed really out of it when he was having his cluster of them, he sometimes would look confused. So, keep in mind, each babies brain operates differently which can make each symptoms appear different. At the time of this video Karsen was having around 4-5 clusters a day. Ok, have I lost you now? I would be confused reading this. With infantile spasms (IS) they have a cluster of spasms, I remember Karsen's longest cluster was over 20 minutes long, He would generally have a spasms every 20 seconds or so. Before we had stopped them with his third different med, he was having around 9 seizures a day (that we saw, not sure if he was having them in his sleep). Infantile spasms is a form of epilepsy that only manifests in babies age 0-2. If the infantile spasms aren't stopped they turn into another form of seizure. Infantile spasms are very hard to treat, you have to be very agressive to stop them. Why? They can cause mental retardation. They are very scary. Looking at the video you wouldn't think they were a scary form of seizure but they are. Karsen used his affected arm a lot more before he had infantile spasms. We believe they caused additional damage to his brain making his arm more affected than it was before. We were told, at the start of his therapy, that his case of cerebral palsy was very mild. Now, reassessing him, we've been told he has a more moderate case. So, get to a neurologist ASAP if you think your child may have IS. When I mean ASAP I'm saying if they tell you their soonest appointment is a month away don't wait, take them to the hospital to get an EEG. Fight! You'll have to, unfortunately. Try to get them on video. We ended up sending the first video to our neuro which in turn got us an appointment for an EEG two days later. I've said this before and have heard a few others in our similar situation say "I can handle the cp, what I can't handle is the seizures" it's so true. So now you can understand why I am so ecstatic that Karsen has been now seizure free for over 2.5 months! 
I hope that this can help any of you out there with a milion questions like I had. This has always been my goal, to help others in similar situations. It can feel like your alone but you're in fact not. I am happy to answer any questions. Shoot away. I am an open book. 

Thursday, September 6, 2012

Sippy breakthrough

For those of you that don't know, Karsen has been having a struggle with food and drinking ever since his seizures started. Now that he's been seizure free for over 2.5 months, insert huge grin here, he's been able to make some small steps of improvement on the eat and drinking front. He's able to eat cheerios (unfortunately I have to hand feed him everything, one skill that the seizures wiped out was his ability and understanding of being able to grab food and put it in his mouth) pancakes, and graham crackers. Karsen has continually fought me on the sippy cups. We've tried every type. So, we started trying to switch him to a straw, no luck. I was having to suck up fluid in the straw and then put it in his mouth and let is slide out of the straw into his mouth. As you can imagine this takes quite a long time to get him to get any fluids in, and also pretty messy. Yesterday I thought I'd give it a shot again with the sippy and see if he'd take it. BAM! He drank 4oz. of milk out of it! I wanted to jump up and down! I've had to be very inventive with feeding Karsen and I still had to be. I ended up using a sippy that was a "4month" sippy. Silicone tip, slow flow. He didn't need the slow flow so I cut a bigger hole in it. Seemed to work pretty good! He's starting to slowly venture into toddler ville, which makes me a little sad. He's my little. Stop growing up so fast!
We have yet to hear him say a word with purpose. He says "ma ma" and "ba ba", but he has no clue what he's saying and it's usually more of "Ma ma ma ma ma" than just "Ma ma". Many kids with cp have a speach delay. I knew to expect this, and I'm at peace with it. He'll move at his own pace, his own perfect pace. I've really been able to enjoy each milestone that he hits since it takes him longer than normal. Looking back at when our oldest was little I don't think I noticed as much as I notice with Karsen. That really went by too fast. It seems like so many moms want to compare when their child started crawling, walking, talking. I'm really quite sick of it. Maybe it took me to have a special need child to come to this realization, which makes me sad it took that to make me see this. Each child is perfect, each child moves at their own pace. Just because  a child may take 2 years to say their first word does not make them less smart than a child that said their first work at 10 months. Each brain works differently. We must stop comparing. Each child is smart, bright, and perfect in their own way. When our kids are in high school do you really think they are going to have a conversation about how one of them didn't walk until 2 or didn't potty train until 4? Really?! I've been guilty of it. I think we all have. Even doctors, they are the ones that will set in some serious paranoia. It needs to stop. Be proud of your child but don't compare. Yes, our children are amazing, smart, gifted, talented, beautiful, perfect kids. Let them be just that, them. Embrace it. 
Yesterday was Karsen's big brother's, Karter, Birthday. Karsen even got to enjoy a little cupcake and frosting of course. In tradition, every year we go to apple hill Labor day weekend. It kind of turned into our birthday tradition for Karter. Both boys got to go on a pony ride. I left wanting to get  a pony for "therapy" purposes... lol Karsen actually was getting a lot of core control from it. Of course we had to get apple donuts, apple cider, and carmellows.... mmmmmm







Tuesday, September 4, 2012

World CP day

Today is world Cerebral Palsy day.

Karsen has spastic hemiplegic cerebral palsy, the result of a stroke he suffered in utero.

This year has been the hardest year of my life hands down, but also has been the most rewarding. Being a mother of two boys is hard, being a mother of two boys one of which has cp.... that's truly hard. It's pulled and pushed me into directions I never thought my life would take me. It's been challenging, exhausting, uplifting, and humbling. It's brought peace in areas of my life I didn't think would ever be peaceful. No matter what your situation, no matter how bad things may seem, there is always good in every bad. No matter how small the good it's still worth the time to acknowledge. Who wants to live in misery? I don't! I want to embrace the challenges (easier said than done, I say that now... lets talk again in a week. ;-) ), hit things head on and focus on all the good and where it has taken me. Backing up to a year ago from now, we had no clue Karsen had suffered a stroke. In that moment I never imagined my life would be this changed in a year. Yesterday I posted a story "the special mother" and one thing in it didn't set right in me. In it it says "...Yes here is a woman whom I will bless with a child less than perfect..." I couldn't disagree more. My child is 100% perfect. God intended him to be this way. He has changed my life drastically and made me appreciate the small things that so many take for granted. There is big things in store for my little man, there are big things in store for every child with cp. They are special, the are perfect. I've met so many amazing moms that are also cp mommy's. Some of them are half way across the world, one of which is just a 40 minute drive. No matter the distance we all understand each other. We are family. A different family that knows the challenges and joys at each milestone. I wouldn't change my life for one second. Yes, I wish Karsen didn't have to struggle, but even kids with out cp have their own struggles. I'm so grateful he's alive, and well, and seizure free for over two and half months! Be grateful for what you have. Your life is your life. It's that simple. Live it!

So today I challenge you to reach out to someone you know that has cp. Make their day a little brighter. If they are older, tell them how they have helped you grow. If they are younger shoot them a smile and let them know how perfect they are.

Karsen has changed me and helps me to grow in ways I never imagined, daily. 

Who's life will you touch today?

Monday, September 3, 2012

The Special Mother


The Special Mother 
by Erma Bombeck


Did you ever wonder how mothers of disabled children were chosen? 

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. 

"This one gets a daughter. The Patron saint will be Cecelia" 

"This one gets twins. The Patron saint will be Matthew" 

"This one gets a son. The Patron saint.....give her Gerard. He's used to profanity" 

Finally He passes a name to an angel and smiles. "Give her a disabled child". 

The angel is curious. "Why this one God? She's so happy" 

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!" 

"But has she patience?" asks the angel. 

"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy." 

"But Lord, I don't think she even believes in you" 

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness" 

The angel gasps - "Selfishness? is that a virtue?" 

God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side" 

"And what about her Patron saint?" asks the angel, his pen poised in mid air.

 God smiles "A mirror will suffice"

Joy in tantrums

I've recently become a victim to a full blown temper tantrum 13 month old. I know it sounds weird but it brings a certain amount of joy to see him throwing a total fit. Why? I know, I'm crazy right?! Well, hear me out. Karsen hasn't been able to really truly be a normal baby. To see him through a fit because he can't reach a toy he wants? Yes!!!!! Throw a fit little man. I can see that you understand you want to get it and you can't. My mom and I were spending sometime together the other day and she had mentioned the same thing I had been thinking. She said "It's great seeing him act like a normal baby". She said this when Karsen was doing the typical throw the toy on the ground from you hair chair to see you pick it up and set it in front of him to do it all over again. I'm a sucker. Every time, I bend over, pick it up and hand it to him again to see him do another time. This morning was a particularly hard morning on me. Karter woke up bright and early, claiming he was hungry. Well kid, if you had ate your dinner last night then you wouldn't be ;-) I'm not a small order chef, you know? I was thankful I went to bed early last night. Just a few minutes after Karter was up so was Karsen, ready to start the day. So, I got up and proceeded to make breakfast. Gave my hubby a break and brought him breakfast in bed. (Good wifey points :-) Oh and not to mention coffee too. As I sat down to feed Karsen Karter started demanding every bit of my attention. I don't know what made me crazy, or snap, but constant picking in each ear from each child while my hubby laid in bed oh so peacefully... I just lost it. After fighting it for a few minutes, I put Karsen down for his morning nap early and talked to my husband. After cooled off I had to take a step back and thank God for everything. Thank God for a cranky baby and a testing toddler. Thank God Karsen survived his stroke. Thank God Karter can communicate. Thank God for a supporting husband. Thank God for a roof over our heads. Thank God for my life. We all have moments of ungratefulness. This morning was pretty bad for me. Really?! I started getting mad because of a fussy baby, a toddler that wanted me to make him a ramp and a husband that didn't say thank you enough.... really?! Talk about ungrateful, Jaimie! Geez! Reality check! My life is good. It's more than good, it's perfect. Just as God intended. His plan is so much better than my plan could have ever been. So, I challenge you to find the joy in your child's temper tantrum. I know, easier said than done. But there are so many people that would love to have a healthy child, healthy enough to throw a temper tantrum, or to even have a child. Be thankful, be grateful, be content. Life is too short to dwell on the negative. 
 Look at that lefty hanging on there! 
 Just like any other baby, loves fans.
My handsome big little. Can't believe he'll be three on Wednesday!