when "normal" rears its ugly head.

it started last thursday night.

"mom, my leg hurts," caleb said to me, as he hobbled up the stairs to brush his teeth before bedtime.

"okay buddy, it probably just means that you're growing.  i'm sure if you get a good sleep, it will feel better in the morning," i said back, hoping that i was right.  that this was just a "normal" growing pain for kids his age.

but i was wrong.

at just after 7am on friday morning, i was woken up by caleb's whimpers, as he crawled to my side of the bed.

"mom, my leg still hurts so badly i can't walk now.  i need to go potty, but i can't stand up.  will you help me?"

i quickly got out of bed, gently picked him up and carried him to the bathroom, where he shook while trying to put weight on both legs.  

his words filled me with dread, even though i tried to not get too worked up.  no mother likes to hear that their child is suffering, and i could tell that this pain in his leg was not "normal."  my mind went back several days worth of memories, trying to link it to something.  was he jumping off couches?  more active than usual?  was he wrestling with ben? 

caleb has had leg pain before.  he used to wake up in the middle of the night crying out, clutching one leg or the other.   i would comfort him, and he would go back to sleep, but then an hour later he would wake up again.  it would continue that way until i would give him some pain medicine that would help him sleep.  most of the time he would wake up the next morning as good as new.  i would ask friends and family members if their kids would do this, and they said yes, that it was normal.  caleb grew out of those after a while.

but for about the past 6 months or so, this new leg pain, where he was unable to walk during the day, has happened a few times.  but in those instances, i've always been able to think back to something that could cause it.  once was when he worked extremely hard during a physical therapy visit.  once was when he had come down with the flu and had a really high fever.  one time he and ben had been wrestling, and his leg had been twisted.

and this last friday, as i tried to think of something...anything that could have caused this, i couldn't think of a reason.  i asked him if he remembered getting hurt, what did he do yesterday, did he sleep funny?  and he said no.  

the pain was so bad that he stayed home from school, and literally couldn't walk anywhere on his own.  just trying to get him to take a few steps made him cry.  i gave him medicine, and set him up on the couch with a heating pad.  i was grateful that ben was there to help me, because even though caleb isn't big by any means, he's still a 5 yr old kid, and the couple of times that i had hauled him up and down the stairs wore me out.

we had him take a long bath that night before bedtime, then gave him a leg massage.  the weird thing is, in the past when he's had leg pain, if we push or massage a certain area, he would cry out and we could tell where the pain was coming from.  but not this time.  i tried everything, actually hoping to figure out where he was hurt, but nothing was painful to the touch.  it came when he was actually trying to lift up his right leg, or put any weight on it.  so as ben and i talked about it, it seemed like it was probably coming from his hip or pelvis, which was unusual.  

the past times we've dealt with this type of leg pain, it usually went away in 24 four hours, so i wasn't extremely worried, just crossing my fingers that it would be over soon.

saturday caleb woke up, crying and crawling to me again.  

that day he had a friend's birthday party to go to.  i knew it was going to be hard for him to go, mainly because the party was centered around a big bounce house, and i wasn't sure if he was going to be able to go in it.  so i tried to prepare him for it, and told him that we would bring a chair for him so that if he wasn't feeling good, he could sit down.  but i tried to be honest and let him know that he would most likely be missing out on some of the things that he wanted to do.  he started to cry, and i hugged him, telling him that i knew it was hard and that i was sorry this was happening during a party.  

i told him that he didn't have to go, and we could rent a special redbox movie for him and get a treat, but that i thought that he could still have fun at the party even if he couldn't do everything.  he said he wanted to go, so we went.

he sat for a while in his chair, but then said that he wanted to get up and go play with the other kids and give the bounce house a try.  and luckily, it worked for a while.  but the kids at the party were in and out of the bounce house, running up a big hill to get a drink, or into the house to go and see the cat.  i tried to give caleb his space, and let him do what he felt comfortable doing.  

at one point, i saw him hobbling up the hill, tears streaming down his cheeks, yelling for his friends to wait for him.  they were too far away though, and didn't hear him.  i walked over to him and asked if everything was okay, and he said,

"well i'm just really sad because i keep trying to follow them, but i can't go as fast and they aren't waiting for me.  and as soon as i get to the top of the hill, they run back down it to go and jump some more.  then when i get to the bouncy place, they only stay for another minute, and get out again.  i just can't keep up." 

you can imagine that broke my heart, especially because there was not much i could do.  his friends were just being kids, they weren't being malicious.  and i didn't feel right about giving them all a big speech about how they needed to wait up for him, because i didn't feel like it was a really appropriate time for that.  

caleb came to the party knowing that it would be hard, he got out of his chair knowing that he was going to be unable to run the way he normally does.  i'm not blaming him at all, i just felt hopeless in the situation, and wanted to be able to help him through it, because i honestly didn't know when or if his leg was going to get better.  

caleb's mild cerebral palsy has caused him physical delays since he was 6 months old.  but up until about a year ago, he didn't recognize it, and ben and i tried to never make him feel like there was anything different that separated him from other kids.  he started to notice though, and has made several comments to us about not being able to run as fast as his friends or the kids on his soccer team.  when we have gone to the zoo, he ends up needing to sit in the stroller for a while, while the other kids his age can walk the entire time.  and he knows that he's not "just like his friends."  

when he did recognize it, we told him that it was okay, that the most important thing for him to do is try his best, and that no one in the world could be as good of a caleb strader that he could be.  the pep talks seem to work, but i keep wondering how much longer they will hold out.  

we haven't told him yet that he has cerebral palsy, mainly because at this point in his life, he's not extremely affected by it.  he knows that he was sick as a baby, that he had seizures, because he saw pictures that were taken of him during EEG's and in hospital visits during one of his many stays, and asked us about them.  during his last MRI, i explained to him that he has some cysts on his spine that the doctors need to make sure aren't growing.  with his physical therapy, we have told him that he is going to build stronger muscles and help his balance.

ben and i have tried to figure out when is the best time, and we just decided that if there is a procedure or something that is daily-life-impairing that comes up, we will tell him.  it's hard to put that label on your kid.  it's hard to tell them they are different, and no longer "normal" because it seems like no matter how positive of a spin you put on it, this label could have the potential to turn into a crutch at some point, or some way to alienate them from the crowd.  and even though i know that in the big scheme of things, everyone is different in one way or another... i know that peer acceptance and wanting to fit in is an extremely important part of growing up.  especially for caleb, who seems to crave that acceptance so badly.

so anyway, back to the birthday party.  

i gave him a hug, and explained again that his friends weren't doing it to hurt his feelings, they were just having fun at the party and that they still like him.  i told him that this would be good for him to remember...that if ever he saw someone else struggling, that he's more sensitive to it and help them because he now knows how it feels.  

i suggested that maybe he pick one place to play, and when his friends came through, to play with them, and then if they left, i would be there to hang out with him if he wanted me to.  that it would be easier than trying to chase them around.

i asked him what he wanted to do, and he said to go back to the bounce house.  so we did.  i stood back when the kids were there, and then when they left i would throw a ball back and forth to him to entertain him.  it worked out much better, and eventually the kids all stayed in the bounce house and started playing a game, so i went back up the hill and sat down.

it's hard to navigate these situations.....to know the right thing to say to him.  to validate his feelings, and acknowledge that what he's going through is hard, but also to work on trying to not make him out to be a victim in this.  to help him take control of his situation and do what makes him feel best, and still confident, when he's feeling so inadequate next to his friends.

i know that there are other kids who have gone through things like this.  kids break their arms, or hurt their legs, and go to parties and have to miss out on things sometimes.  i also recognize that it could be worse, that there are wheelchair-bound children, or even more difficult situations others are in.  i think that i just saw a potential for this always being the case for caleb....to be behind, to constantly be trying to catch up.  it might not be, but there's a bigger chance that it might be.

today....sunday....he is still hobbling.  he is walking on his own, and things seem to be getting better, but he still isn't walking right.  since we're now going on day 4 of this leg pain, i'm going to call his pediatrician in the morning to get a referral for a specialist.  we haven't had one so far in arizona, we've just been able to work through shriner's hospital for follow-ups and consultations when we visit utah.  but i think it's time.

tonight ben and one of our friends gave caleb a priesthood blessing.  whenever he is given one by ben i'm always reminded of the words that were said during his baby blessing.  that he came to this earth with physical challenges, that he was strong, and would be able to overcome them.  

i don't know what exactly that means, but it's just a reminder that God is aware of caleb.  

i have always felt that and been sure of it, even more sure than i have been that God is aware of me.  that surety is such a comfort during times like these, when the balance between fear and faith has a tendency to start to weigh more heavily on the fear side.

it's hard for me to talk about this with others.  most friends and family don't really even know what's going on.  i don't know why it's so hard for me....and that when i have been asked by people in church or at the birthday party....i downplay it like he just sprained it and it's not a big deal.  i guess because, maybe it isn't a big deal?  and why get people worked up over nothing?

i have been this way a lot with caleb's situation, though.  i don't talk much about it even though it's actually extremely difficult on me emotionally, and i worry a lot about him and about his future.  i worry that i'm not doing enough, being as proactive as i should be.  i worry that i'm doing too much, and stressing myself out over nothing.

i worry.

but like i mentioned before, i do know that God is aware of him.  i know that caleb is capable of handling whatever comes his way, just like the rest of us are.  and i also know that i am his mom, and am capable of helping him navigate through this.  we are both strong enough for whatever is ahead.

we're all going to go through hard things.  all of us.  each wrapped in our own special, individualized package.  and it's how we face these hard things that defines our character.  to run from them, or fear them, or get angry and bitter about them will only make it harder on us.  

my hope is that i can help caleb to look at these trials with an understanding that we have the capacity to do anything if it's God's will, and that he knows what is best for us.  

to have faith in that.

and most of all to know that he is, and always has been, so much more than "normal."

the diagnosis.

a few days after caleb's MRI, while my sister and i were driving back to arizona with the kids, ben called to let me know that the results of the spine section of the MRI were in. 

the cysts that are on his spine are still there, but not big enough to need surgery.  we will continue to keep an eye on them.  he does not have a tethered cord, and will not need surgery for that either.  phew!  the neurologist had a family emergency and will be getting back to us with her section of the MRI in the next couple of weeks, but we were grateful for the good news.

as far as the diagnosis, it looks like he is being diagnosed with cerebral palsy, which is why we initially went to shriner's hospital when caleb was 10 mos. old, to see if this was what he had.

cerebral palsy {CP} is not always an easy diagnosis.  it's not a missing or extra chromosome.  it's not found in a blood sample.  it's what has been explained to us as an "umbrella" diagnosis, which means that there are a lot of symptoms that together add up to be CP.  caleb has had many of these symptoms:  low birth weight, failure to thrive, seizures, excessive vomiting, excessive fussiness, gestational problems, chronic constipation, clonus, hypertoned or hypotoned muscles, spasticity.

CP can occur at birth or during pregnancy, where either the baby is not getting enough oxygen or has had some type of a stroke and it causes neurological damage.  it can also be caused from infancy up to about age 3 for various reasons.

in less severe cases, such as caleb's, it isn't obvious until the infant reaches around 6-9 months when gross motor delays become more clear.  it was at this time that we first noticed caleb's physical delays.  he rolled over right at the average time for babies and sat up.  but when it came to crawling, or pulling up to stand, or cruising or walking....he fell significantly behind.  

instead of crawling caleb scooted on his rear end, and he didn't walk until after he had turned 2.  this was also after a lot of physical therapy, and walking with a walker, and then having orthotics made for his feet.

he also has a more rare form of muscle spasticity.  where the majority of CP kids that i have met or seen, or read about, their muscles are extremely tight on the backs of their legs, usually their calf muscles.  many walk on their tip-toes because their muscles are so tight that they physically cannot set their heels down.

caleb is the opposite.  his muscles are extremely tight in the front of his legs, so he actually has a difficult time pointing his toes and is extremely weak when it comes to walking tip-toed.  he doesn't have the ability to bend his feet the way he should.  but to look at him, he looks completely normal except that he's on the tiny side.  and it isn't until you watch him run or try to kick in the swimming pool that you can see that something is just a little bit "off."

so that's why this diagnosis took a little longer.  it was not cut and dry for caleb, which has been the pattern of his health since day one.  he likes to keep us guessing.

luckily, CP is not a degenerative disease.  whatever type of damage that has been done, is done.  then it just comes down to maintaining and working with what has happened and trying not to do any more damage by allowing certain muscles to remain weak while others are in a constant state of flexing.

as far as our lives changing with this diagnosis, it most likely will not.  what it will do is allow caleb to qualify for anything he might need as he continues to grow and with the physical struggles that he faces now and whatever he will face in the future.

i think the weirdest part for me is to finally have....an answer.  a label.  for so long, through the seizures and the testing and the constant screaming and the vomiting and the nagging in the back of my mind that there was something wrong, we were told that there was no answer for him.

and so i had resolved myself to accept what we were told and just let him be.  let him grow.  let time tell us that either the specialists were right, or they were wrong.

it isn't about proving anything, or blaming anyone.  it's just been part of the journey of caleb and i believe that things have turned out exactly the way they needed to.

i don't know for sure that diagnosing him at 10 months old would have changed the way i mothered him, or the way that i looked at him but i can imagine that it might have.

to everything there is a season.  and this is the season of diagnosing and moving forward again.

we're extremely grateful that caleb's form of cerebral palsy is mild in comparison with what could have been.  that neurologically he is not just great, but fantastic.  he has been through a lot in his 5 years.  he has faced daily physical pain that i have not had to face and that i do not understand. 

i remember the baby blessing that was given to him by his dad, when he was only a couple of months old.  it was short, and direct.  there were a lot of things not said during that blessing that a mother wants to hear.  about a mission and a wife and future children.  but what he was told was that he knew he was coming to earth with physical challenges and that he would be given the strength and ability to overcome them.

his struggles are not yet over but i am hoping that the worst is behind him.

i look at him still, with all he has been through.

i watch him hang on through all that he has been given to overcome.

i watch him climb hurdles all of the time.

and i watch him smile, 

and make goofy faces,

and laugh 

while he sits on the top.

and so, that's just what we will help him continue to do.

leah update--how she's doing now...

i had several people ask me how leah is doing after her last trip to the ER, and how her breathing problems at night are, so i thought i'd write a quick update...

with the first trip to the ER for her waking up several times panicking and arching her back, we were told that the doctors wanted to order an EEG to make sure that it wasn't seizures. i really felt it was unnecessary, because i had already had a kid who has seizures, and this looked nothing like them. i know seizures can come in different shapes and sizes, but still. i watched her very closely each time she would do this and really, she just seemed like something was making her very uncomfortable.

while in the hospital i asked the doctor about the possibility of reflux. they said it definitely could be a possibility, and said they would have to schedule out a couple of weeks for a reflux test. since caleb was on reflux medicine, i knew that it is a very mild prescription that has little side effects, and also knew that within a couple of days i would be able to tell if that were the problem or not.

so i pushed to have them write a prescription, got it filled, and started her on it immediately.

within two days, she stopped waking up at night. there was no more panicky episodes, and she started taking longer naps in the day time.

i spoke with her pediatrician about this and said that i didn't feel like an EEG was necessary. he said that we should still do it, "just in case." luckily for me, the EEG couldn't be scheduled until a month away. i figured that would give me time to really watch her, and consider my options.

3 weeks later...

since the problem had clearly gone away, it was the day before the EEG and they had a 24 hour cancellation policy. i talked with ben about what our decision would be and how we both felt about it. i was grateful that we both felt the same way.

and picked up the phone to cancel the EEG.

so that's what we did, and i feel completely at peace about it.

like i said on the episode, if i had felt any reason to do the EEG, i would have definitely done it. there's no long-lasting effects from an EEG, it just makes for a long day and a lot of crying and discomfort on the one getting the test done. not to mention, after the little suctions with wires are glued to the baby's head and are then removed, they take hair with them! so more bald patches for little leah.

i'm totally kidding here, i wasn't worried about that at all.

anyway, she has been perfect since then. like i said, she sleeps better, longer, and is more content with this reflux medicine. reflux doesn't always mean spitting up (because she doesn't unless she is completely overstuffed) but can just mean that there is extra acidity in the baby's stomach that causes discomfort each time they eat.

so there you go!

she is 5 months old now and such a happy baby.

and we all know that

happy baby = happy mom!