A Letter to the “Tough Mom’s”

To the mothers out there that have to put up with more than what we bargained for,

You may feel like at this point in life that you can’t take anymore of this drama. You may feel like giving up right here, right now. But don’t.

Even though your child may act like they “hate” you, they don’t. Even though you have to do treatments, medicines, therapy, exercises of all sorts, flat out defiance, etc. you are doing it to better this wonderful life that God has given you.

We were chosen to live this life because He knew we could handle it. We were chosen to raise a possible world changer.

We have special kids.

Sure we have to think about most things that the average parent doesn’t. Like, treatments, medicines, therapies, exercises of all sorts, and quality and length of life. But doesn’t all those smiles and belly laughter just make every day so worth it?

I’m going to be honest with you. Tonight, I had a rough night. During our treatments my child went into defense mode and basically tried to widdle me off with multiple blows and kicks. I had to forcefully hold him down using my special tactical hold. (Marines got nothing on this CF mom…) The hands were strapped by my arms, the chest was restrained by my strength, the kicks were missed by a wide stance, and the head butts were diminished by my steady cheek.

I despise these nights.

But I know that I am putting another day on my child’s life. No kicks, bruises or black eyes could make me stop. This is my baby. I am his “tough” mom.

And even though I hate it, I love it.

In a few minutes my child will forget all about this experience and I will once again be his hero, as much as he is mine.

Don’t get me wrong, we all have our bad days and many a times have I sat in this position and silently cried while I held my child down through what he must consider torture. We’re only human. There would be something wrong if we weren’t emotionally effected by it. But it’s how we uphold ourselves that shows our true colors and who we want to be.

You are capable of this life. Everything that happened in your life has led you to this situation. Now shine through it! God is right there doing this whole thing with you. He’s been through worse, and knows exactly how you feel. Take advantage of that shoulder and lean on it. Learn from it. Be tough from it.

Your child learns from how we model ourselves. I chose to model tough, for my child’s sake.

You are not alone. You got this, Momma.

Defense vs. Love hold.

Jeremiah Update 5•13•14

Today was our checkup at the CF clinic. One that I was dreading, quite honestly. Jeremiah has been battling a slew of sickness’, between double ear infections, croup, another ear infection, a lasting cough that won’t let go, and either another ear infection or the same one that never went away.

This kid has had a few (cough cough) antibiotics in him to say the least, but he has never once faltered in his demeanor. Even with his double ear infection, croup, and 101 degree fever, this kid has never stopped smiling or jumping around (which honestly makes it darn near impossible for Mom to know when something is wrong!). So I thought for sure the Dr’s were going to tell me that the next lineup of antibiotics were on our heels. I thought for sure I had been doing something wrong.

I mean why else has my little man been so sick?!

I think every mom can relate to that sentiment. You just feel like it’s all your fault when they’re sick. It’s a horrible feeling. Ugh.

BUT instead, we got great news! His lungs are clear, his ears while they still have fluid are not infected, and his growth is fantastic!!! This is music to our ears! We never tire of it because we know the day might come to where the news is not as good.

God willing, that day won’t come!

As good as this news was, we also knew the worst day of the year was upon us. Lab day.

This is the day where they draw a good amount of blood from my baby to make sure everything is working well internally. This is the day we dread.

X-rays are first, by choice. We know he does better at this than the blood draw. As usual, he does great sitting in the chair, looking very helpless, but brave at the same time. Confused, he does what he’s told and never throws a fuss. It breaks my heart and makes it burst with pride all at the same time.

Again, only mothers can totally understand how that is possible.

Next comes the labs. The labs… The labs where he runs into the room, waving and calling out a cheery “hi!” to the nurses. He’s my happy boy and completely innocent to the thought that pain is just around the corner. He strikes up a babbling conversation with everyone as I set him on my lap and the nurses pull the arm rests around us so he can’t escape. He oohs and ahhs over the colorful strap that is just about to cuff his arm. I try to distract him as they bring the needle, but he sees it and somehow he knows what it is.

And that’s when the screams of terror start.

Thankfully, rarely do moms know what it’s like to forcefully hold down their child for countless minutes as blood is drawn. It is probably one of the worst emotional pains I’ve ever encountered. Shots are over and done with in a second. The blood draw from my kid takes fooooreeevver. Knowing that I’m helping to inflict this type of pain onto my son is about more than I can bare, and just when I thought it was over, they tell me that his vein isn’t good enough and they have to poke the other arm.

Oh joy.

It has happened before and I know it’s not their fault. I was actually waiting for that response.

When they pulled out the first needle he screamed “All done!” and clawed at his elbow. He threw himself at me and I hugged him as tight as I could, for as long as I could, before we had to do it all again.

Labs are the worst days ever.

The only joy I can find out of these days is that they are only once a year. That I don’t have to do this monthly, or more. That he doesn’t have to go through chemo, bone marrow transplants, or anything worse like that.

Thankfully it’s just a needle.

But, for me, labs are the worst day of the year.

Can we just praise God that he is healthy?? We honestly don’t deserve how much favor he has shown us. I know the different outcomes that come with this disease…

God is good. All. The. Time.

My son is 29.3 lbs and 35.4 inches tall and a big ball of energy and light into the world.

This is one proud Momma.

Coming home after our long day at the CF clinic. All smiles as always

The Party in the Woods

The party was partied, the people have left, the decorations are slowing making their way down, and Miah is officially two.

Our little man has become obsessed with Winnie the Pooh. It was one of his first words. Every time he saw his Pooh DVD case, he would dance and jig, jump and stomp, squeal and shout, while proudly pointing to the cuddly, chubby bear.

He. Loves. Winnie the Pooh.

I knew I had to do his party as the “100 Akre Woods”. He is my little Christopher Robin after all. His bedroom is even inspired from C.R’s room. About three months ago I started planning. I grew more and more excited. I seriously couldn’t wait to pull this off. (I have accepted that I am a child now and forever.) Pinterest started taking up all of my time. I mean, I became quite addicted. My friends always know what is next on my project list because it consumes their pages too.

I started putting different ideas together to pull off this vision in my head. The week of the party was go time, and I was giddy to no end seeing it come together. Signs of every character in the 100 “akre” woods were made (studying the handwriting seriously from C.R). Leaves were cut out and meticulously designed with yarn (Jason did three… By the end he was shooting daggers with his eyes), pictures were chosen and printed, stories were written, food was prepared.

But instead of boring you with details, I’m going to show you…

 

These now hang in his room. “Christopher Robin’s  Jermemiah’s World”

Outside Miah’s room

Fooooooooood!

Croquembouche: Our interpretation of a beehive… And deliciousness!! Recipe on our food blog found here so you can make one too!!

Pigs in a blanket with mustard cream sauce (recipe on our food blog here), yellow mustard or ketchup for dipping.

100 Akre woods acorns- Hershey kisses “chocolate glued” to halved nutter butter bites and chocolate chips on top. Cutest things ever!

Tigger tails- Pretzel rods dipped in orange candy melting chips with melted chocolate stripes. *Tip: Do NOT color white chocolate chips. The chocolate will seize up and it’s useless… Lesson learned.

Peanut Butter and Honey Sandwiches

Honey Comb and Teddy Graham trail mix

Rabbit’s Veggie’s from his Garden… and olives..?

“Hunny” pots filled with gummy bears that we hid for the kids to go on a treasure hunt. I liked it too because I ate the ones that no one found. Muhaha!

And what’s a party without some mason jars?….

Miah man. The life of the party. Literally, in this sense…

He loves his balloon. It’s just like Pooh’s!

I wrote a story for everyone to have as a favor to take home, along with the pictures that we printed out and hung around the house. It read:

-Chapter 2-
The Journey Continues
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This could be the birthday of any small boy. But this particular birthday belonged to a boy named Jeremiah McClearen. Now, Jeremiah McClearen has a very active life- style, full of throwing and kicking balls, running as a regular pace. Not to mention the uncanny ability to collect friends. Big friends. Small friends. Young friends. Old friends, but his favorite friend was his dog, Eli.

Every morning Jeremiah wakes up and immediately calls for Eli. Eli, upon hearing this from his own slumbering placement, jumps out of bed to greet his smiling (and boun- cing) friend. Together, they start the brand new day. And, what is a friend unless you share everything? So Jeremiah feels it his duty to cast off his breakfast scraps to Eli, who is waiting patiently by his side. Of course, Mother can never catch this action quite in time, and spends the rest of the morning cleaning up crumbs and yogurt streaks. Yogurt is Jeremiah’s absolute favorite food. In fact, he feels it necess- ary to ask for it at every meal. Being rejected quite often, he enjoys letting Mother and Father know of his displeasures very audibly.

When Jeremiah and his trusty dog aren’t causing mischief, the young boy has discovered many new things. His passion is to go to new heights, in the very literal sense. Mother has found him standing on a skinny arm rest of their wing-back chair, standing straight up and his ams out to help balance. Another favorite pastime has been standing on the arm rest of the couch and falling backwards as stiff as a board, to see how much bounce he can achieve. All the while, Eli watches nevously from under the table.

During the past year Jeremiah has found out about planes, and seeing these in the air overhead excites him speechless. He gazes and points, and with mouth gapped open wide he shouts “Oh wow!” until it has once again vanished. With the snow melting, his outdoor escapades include chasing the rampant, cabin fevered Eli, and stomping in puddles. He is anxiously awaiting the full melt of the dreadful snow, to fully appreciate all the outdoors hold for him. Even though the snow is horribly holding him back from muddy endeavors, Jeremiah took an even grander adventure in the outdoors: skiing with Mother. He accomplished this at the meek age of 23 months. He credits this to his daily balancing on arm rests and couches.

With his health still intact and important as ever, Jeremiah has become famous with his Doctors, with his smile and charm. To be within a mile of him, and not hear his laughter is a feat. He calls out “Hello!” to any and all nearby participants. He is becoming widely known for his loveable character and outgoing manners. (This being the case at any location he goes.) He weighs a hearty 28.5 lbs and stands at 34 inches tall. Mother cannot believe how quickly his pants and shoes no longer fit, and is on a constant quest to find the next size.

Father smiles proudly at the notion that his son has taken after his love of fine food. Jeremiah is also proud of his gourmet gene, whereas mother regards it as a “picky eater”. Eli is the only one not complaining, for the call of “clean up!” has him drooling and running. Everyday is a new adventure and everyday new memor- ies are created. Mother and Father often grow sad to see their son grow up so rapidly, but are excited to see where the next journey will go. Look for more adventures of Jeremiah (and Eli)!
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 I am officially the type of Momma who cries at everything. Below are paintings that my sister, Sarah, and my friend Nicole painted (Nicole did the map, my sister did Pooh and Piglet), and they reduced me to tears when I saw them. They are now hanging in his room.

I.Love.Them.

We’ll be right back after these messages…..

*And if you love them too, they are working commissioned artists that will paint one for you too! Prices vary on sizes and content. Contact me for more info!*

We now return to our show.

This momma also forgot to get candles…. So I improvised.

I thought they fit in with the decor quite nicely.

Randoms from the day:

 

What a fantastic day! As with any mother, I am extremely excited to celebrate and honor my little hero, and am thankful that I was blessed enough by having him another year!

Now, on to many more adventures of Jeremiah!

Two Years Ago My Life Changed…

Here’s another throwback thursday for you, and it’s only fitting to recall the story of Jeremiah’s adventure into this world. It was a crazy day…

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Now, would you like to hear how this little guy got here? It is quite a story. It wouldn’t be a “Jason and Kate” story without a little drama and white knuckles. Here it goes….

Friday March 16th: After months of discussing it, Jason and I (at the helpful push of my mother) decided it was time to get our pup Eli fixed. We wanted him to be as calm and collected as possible with a baby coming. I call C-Snip (a low priced “fix-em” place with all professional “fixers”) to schedule the appt. for Monday March 19th. But “due to the overwhelming amount of calls, C-snip will get back to me on a definite date.”

Whatever…

Sunday March 18th: Having contractions in church. Nothing too concerning. More annoying and feeling a need to go…to…the…bathroom… Getting through it. They continue spontaneously through the day. Signs of him coming? I’m in denial…

Monday March 19th: Feeling great! No contractions what-so-ever. Maybe two little ones. Eh. He’s not coming soon. Get a call from C-Snip. “Sorry we weren’t able to schedule your dog for today, but we do have a space open tomorrow. Would you like to make an appt?”

“Well, sure”– As I said, I felt great. So at 8am the next morning we had to drop off Eli. Monday night though, I started getting reluctant about going through with it. I was terrified it would change his demeanor  and he wouldn’t want to snuggle with me. J and mom calmed my nerves and the decision was made. 8 am I would have to say goodbye to my “ol’ young pup” and hello to a question mark of a dog.

Nervous…..

Tuesday March 20th: Wake up. On to C-snip. Line out the door and around the corner with people waiting to get their pets snip-snipped. Half hour wait…

Around 12pm March 20th, I started having contractions. Nothing big at first, just little twinges. I make a couple comments to my mom about them. Asking questions about when they become the “real thing”. All my mother says is “Oh, you’ll know…”

DUN DUN DUUUUN.

1:30ish pm, contractions start becoming more consistent, longer and more intense. Mom is noticing the difference and starts logging it. Smart woman, my mother.

2 something pm, even more contractions than before. Mom suggests I should call my mid-wife. I follow orders. Mid-wife says to take a hot bath and see if the contractions sub-side and if after I get out, are they still as consistent. I follow orders. Off to the bath I go. Contractions subside.

It’s getting closer to 4, which is when we need to pick up Eli. I wouldn’t hear of not going. So me and my stubborn self get ready quickly, hop in the car with Mom and J and head to C-snip. Along the way, more….contractions… arrive….only this time…..stronger.

4:00 pm, We arrive at C-snip to see a crowd of people waiting for their dogs as well. There is a speech being given about how to manage your pet when you take them home. What to do, what not to do. My contractions are still going strong and taking numbers. I’m trying to breathe. All I can think about is getting my dog… I get the papers in my hand. Any minute and I can leave!! Mom goes and pulls up the car. “Man, these people are slow”, I complain to myself, when in reality I’m sure “these people” were actually being  quite prompt (I blame the contractions). Another contraction starts. This one is taking my breath away… I grab ahold of Jason’s arm and squeeze. He turns and looks at me. “Are you alright?” he asks. Before I can even answer, I feel a big ol’ POP and WOOOOOOSH and gross, slimy wet.

My water had just broken….

I run to my mom who had just parked. I’m crying because I’m not sure who just witnessed this rare scene, I want my dog, and my contraction is still going strong. And I realize, this is actually happening. I am about to become a mother. My emotions start playing with me and a little demon gets in my head, filling the space with self doubt. I do my best to push it away, thinking to myself that millions of women do this every day. I surely can uphold my “womely-ness” and push out this bowling ball.As I’m sitting on the conveniently placed dog-blanket we had in my moms car, Mom goes and tells Jason what had happened, explaining that we need to get Eli pronto and head off to the hospital. While this is happening, I make calls. I’m trying to get a hold of the dog-sitters, my sister, my mid-wife and my friends to let them know that its show-time. Contractions are coming every minute. Inside the office Jason goes up to the head nurse and tells her, “my wife’s water has just broken, I need my dog. His name is Eli.” Her eyes bug out and she runs off in search of our pup. Everyone around Jason is stating to him “Oh my goodness! You’re going to the hospital!!”

Why thank you. We weren’t sure where to go in this situation…..

The nurse comes out in a state of near panic and announces that they do not have an “Eli”. Mom jumps in and states “How ’bout Elijah?” –“Oh yea! We have Elijah!”

… Tight shift ’round them parts…

Eli bounds out of the office, not-so-gracefully jumps into the car and we are off. We decide we have enough time to drop Eli off at home and grab our bag (that I had just packed about 3 hours before hand). I am feeling that I am the worst mother at this time, dropping my recently neutered canine off at home.

Sayonara! Good luck with the stitches!

On the way to the hospital, the contractions and the feeling of desperately needing to visit the little girls room continues to grow. Along with the ever leaking water-breakage. Yes girls, this stuff doesn’t just break politely and leave you alone. It is there for you, making you feel on a whole other level highly and involuntarily uncomfortable… Lovely, right? I tell my mom that I really feel like I need to go to the bathroom. A look of desperation sweeps across my mothers face and she shouts “DON’T PUSH! Whatever you do, don’t push!!”

At 5:15 pm I am admitted and transported upstairs to labor and delivery triage. I tell them eagerly that I will be wanting the drugs A.S.A.P. I am fearing that I might have missed my window.

With a sigh of relief I am told that I am only dilated to 4. Even though I was in pain, I did enjoy the fact that all I had to do was lay on a gurney as people did all the work transporting me. Too bad my contractions got in the way of feeling the bliss fully.

In the delivery room they hooked me up to all sorts of machines, making me look like a high tech stereo system. I was still having heavy contractions back to back. Mom and Jason saw that they were I guess “off the charts”. Have to be honest… Made me feel a little better that I was handling the pain as well as I was with “off the chart” contractions. It gave me strength to endure more, knowing that this was as bad as it was going to get.

To get an epidural, you have to have a liter of fluid pumped into you. To a woman in labor, this takes roughly about.. oh….eternity. By the time it took to get that fluid in me, the nurse was stating that she might need to check me again, due to how many and how intense my contractions were. I looked at her and said “Do.. not… check… me…. Just give me the drugs!!!!!”

A few minutes later, my legs felt heavy and my uterus was singing praises. Halle-friggen-lujah.Everyone is familiar with the phrase “time flies when you’re having fun”, time also flies when you’re about to become a mother. I could’ve sworn that it was only a minute or two after the drugs kicked in that they were pulling the huge, intimidating lamp from the ceiling. “We’re getting you ready to push!” they told me. Ummm… Hold on… Don’t I have a couple more weeks of this?

Nope, I was 10 cm…

My mid-wife arrived, all smiles and bright eyed. As soon as she got there, the action happened. Jason and Mom hadn’t left my side. My sister arrived about an hour before hand. Everyone was here. We had talked about who I wanted in the room. Jason, of course, and I had asked my sister to be there to help coach me. She had already done this 3 times, the ol’ pro! I also decided to have my mom in there. She had been with me through this whole thing, and I felt like she more than deserved to watch the birth of her first grandson. (Side note, even I decided to watch it with the help of a mirror. Way cool! For all you girls who don’t get queasy, I totally recommend it. It helps you see what you need to do while witnessing the birth of your kid. Might as well see it to the end right?? I also have watched births so I knew what was coming…)

I don’t know the exact time that I started pushing but it went by pretty fast. I might have been pushing for maybe 20 minutes when my mid-wife told me I needed to stop because they had to call neo-natal up. (There was meconium in the water, meaning Jeremiah had pooed.) Neo-natal had to come make sure he was cleared of all of it when he popped out. The call to neo-natal decided not to go through for about 5 minutes. And then it took another couple minutes for them to get there. I’m just chilling with a head about to emerge and forced not to push.

Sure, I’ll do that.

9:30 pm March 20th 2012, Neo-natal arrives. They stepped in announced “we’re here”, Brenda (my mid-wife) says “ok you can push!” and voila! In one more forceful push, he vaulted out. Literally… Brenda had to play catcher as the fast-ball catapulted at her, with all the slitheryness that comes on a newborn. I then heard the most beautiful noise. My baby boy shrieking. Praise the Lord!

Jeremiah David McClearen was born at 9:32 pm on Tuesday, March 20th 2012. He was 19 1/2 in long and weighed 7 lbs 10 oz. He scored an 8 and 9 on his APGAR test. The picture of health 🙂 We have been completely blessed through this entire pregnancy. I couldn’t have asked for a smoother, faster delivery. God is so good to us!Here are some pictures taken by my sister Sarah Davis, myself and even a couple from Jason

  He came out practically smiling

My favorite 🙂 (Thanks Sarah!)

How I feed…

Ducky vase.

One day old

One of our favorite nurses

Going home outfit

At home and at peace

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I can’t believe this was two years ago…

Look at us now.

TBT: Let’s Start at the Very Beginning…

It’s very eye-opening to go back and look at the day everything changed; the day we found out about CF. I wrote this on my old blog about a week after he was tested. It was the most surreal day and one I will most likely never forget. Where it feels like a lifetime ago, it also feels like it all began just the other day. But if I have to be on this roller coaster, I couldn’t have asked for a better ride.

For those of you who don’t know how this whole adventure began…

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I’m not even sure how to even begin this post… Well, things have changed. A couple weeks ago I received a call from Jeremiah’s pediatricians office saying that they had a notice from the Helen DeVos Children’s Hospital saying that Jeremiah needed to be brought in for tests. They asked me if I knew anything about it, which I didn’t. The nurse told me that the pediatrician would be contacting me with more information.He finally called back that night (amazing man even called me after office hours! I was impressed) saying that Jeremiah’s infant screening test came back with a mutated gene for Cystic Fibrosis. He told me not to worry because to actually have CF you have to have two mutated genes. At the moment it looked like he was just a carrier for CF, which is pretty common. 1 out of 25 people are carriers for CF and 1 in 3,000 people are diagnosed with it. 90% chance was he didn’t have it, but they needed to see him to be sure. So Friday morning we had an appointment at the Children’s Hospital for a sweat test to measure his sodium chloride.

The sweat test was basically two electrode stimulators hooked up to Jeremiah’s arms for five minutes (on each side) and 30 minutes bundle tight against Mom to provoke enough sweat to test. The first side he hated, but we figured he was probably hungry and this boy hates to be cold. As soon as the littlest draft hits his skin, all hell breaks loose. Bundle him up and he’s right as rain. I blame it on my bad circulation and Jason’s lack of fat. This kid is screwed…

After the sweat test we met with the genetics specialist to get a family background. There is absolutely no CF known to be present on either side so we figured that someone on whichever side has to be a carrier…somewhere… If the tests came back as negative Jason and I would have to get tested to see which one of us is the carrier. If we were both carriers, each of our children had a 50% chance of being carriers and a 25% chance of having CF. Also, our siblings would probably have to get tested as well. The inheritance lecture is a lengthy and a somewhat confusing one… I’ll spare some of the details for now…

We had to wait an hour and a half to get the results back from the sweat test. We met with nurses and took Jeremiah’s vitals, which to me seemed pointless because we were being told there was a 90% chance he didn’t have it. All these vitals were just making my kid cry. I was counting down till we could leave. Finally the Doctor came in. The lady had the most soothing and sympathetic voice. You could tell she was just the nicest thing. Nothing was setting off warning bells to me. I was all smiles.

She sat down next to me and started explaining the numbers of the sodium chloride levels. Anything below 30 and he was fine. Anything above 60 and 99.9% chance he had it. Anything in between and they had to do more tests. She told me that my sweet little boys number was 108… 108……… 108……………… 108…………..

Even now that I’ve had time to process everything, it still seems surreal. The number still catches in my throat every time I have to say it. I couldn’t imagine that this perfect creature that I was holding had a life threatening, incurable disease.

Cystic Fibrosis is a genetically inherited condition that effects many organs in the body. Mostly the lungs. Everyone is born with mucus in their lungs, people with CF have a protein that basically thickens the mucus, making it hard to get rid of. Over time it will become worse. (I am trying to explain this the best way I know… I’m still learning everything :/. If something is incorrect I apologize… I didn’t really have an idea of what CF was up until 2 weeks ago…) It also effects the digestive system. 90% of people with CF (or so I am told) are pancreatic insufficient, meaning they cannot absorb the nutrients in their food. They have to take enzymes to help with the absorption. Also, CF patients need excess salt. They are known to sweat at higher levels and lose larger amounts of sodium (hence, the sodium chloride test).

In the recent years, many breakthroughs have occurred. There are multiple anti-biotics and medicines to help break up the mucus making the disease easier to handle. Caught early enough and the results are even better for less hospital visits and longer duration of life. Many years back a person with CF usually didn’t make it past teenage years. Now, the average age is 36. There are many cases where people are lasting long into their old age, with the numbers growing each year. The disease is livable, but still very serious…

With the new technology, Jeremiah’s CF was able to be caught in the earliest stages, before any symptoms and mucus could build up. He has been put on enzymes which are fed to him with applesauce which is by far the weirdest things I have ever done; spoon feed applesauce to a newborn. It’s salty applesauce too, since he needs 1/8 tsp of salt a day. He has been put on a nebulizer with albuterol twice a day, followed along with chest percussions (a little foam plunger that we have to lightly thump on his shoulders, back, chest and sides). The last thing he needs is a dropper of multi-vitamin. All for a newborn… Whew…

Everything right now in this stage is precautionary. He has no symptoms as of yet. In fact, this kid has some of the healthiest lungs I’ve ever heard… He takes his medications like a champ too. Before each feeding we have to give him his enzymes and he now knows how to eat off a spoon. He doesn’t spit it out either. Not on purpose anyways. He loves his multi-vitamin. He smacks his lips with great force and swallows every drop. I think he looks for more…
Jason and I trade with the chest percussions and nebulizer treatment. I take morning shifts, Jason has before bed. Jeremiah just sits there with the mouth piece (looks like an oxygen mask) hovering above him with mist pouring into his airways. This is the hardest thing for me… Anything that is small and helpless dealing with a burden beyond their knowledge always makes my heart ache. This is nothing short of heartbreaking when I see him staring at me with his famous concerning look. And he just takes it. Doesn’t cry. Doesn’t whine.

My strong little man’s first time on the nebulizer:

God has dealt us these cards for a reason. We were (and still are) praying for a miraculous healing so our baby boy can grow up without this burden over his head. We know God can heal him at anytime if it’s his will. We also know that this might be where he wants us in life, in the CF community to be a light unto the people that might not be taking it as well. Or people in general that might not be handling their “deck of cards”. I question where this is all leading to in life, but I’m NOT questioning that God knows what he’s doing 100%, and he chose us for a reason. He has our best interest at heart. As our favorite verse that we have adopted says “‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not harm you, plans to give you hope and a future.'” –Jeremiah 29:11. I had heard this verse many times before, and I had in mind even before Jeremiah was born that we would put this verse over his crib as a spoken blessing upon him. Especially since it has his name. I had no idea that we would be depending on this verse so fervently.

Each day I get through by the prayers from our wonderful friends and family. I couldn’t be functioning so calmly without them. God is teaching me so much through all of this. I honestly have never felt closer to him. I surprise myself with how well I am handling this tough transition. So much so that when I do have a bad day and I can’t stop crying, I have to remind myself that it’s Ok to feel those emotions. It doesn’t mean I trust God any less. Jason has been great too. Not only does he have to learn how to be a Dad and handle a new baby, but a Dad with a new baby with a rare condition. Being a nanny and an aunt of three, I know my way around a baby. But even I find myself second guessing everything because I don’t know what a child with CF is like. We are both in for a very educational experience. And we are taking it one day at a time.

There is so much hope out there with all the medical breakthroughs that there could be a cure in a few years, or a medicine that basically makes it invisible. Jason and I do not look at the numbers of average age of death. Heck, the rapture could happen tomorrow for all I know.  If this is where I’m supposed to be, I’m going to take it for all it’s worth and keep on smiling. I will not have the devil bring me down because of this hiccup. I want to look at it as a blessing. My child could’ve been diagnosed with something much worse than CF. (I mean come on, this kid has to be on a high-fat diet when he gets older… Milkshakes and cookies anyone? Don’t feel sorry for MY kid…) I am happy that he is as healthy as he is. Praise the Lord!

Also, another praise, we had to get a pancreatic test to see if he was pancreatic sufficient or not. Anything above 100 says that it’s normal. My boy’s test came back as 237! They said they like to see it within the 300-400 range, but it’s NORMAL! 10% of CF patients have properly working pancreas’. He’s still on enzymes until his weight gain comes up (which probably won’t happen too fast if you’ve ever seen his father…) and in a month they might do another test to be sure, but I am praising God all the same that we have that glimmer of hope in our horizons! He will never give us more than we can handle. He is an amazing Father.

Thank you for your prayers! We still need them so keep ’em coming! I’ll be keeping you updated…
God Bless!

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Now look at us…

A Day in The Life… Playing with Strainers–A Photographic Story

Where most kids play with blocks and figurines, my child plays with kitchen equipment (his dad is super proud). Ever since he could walk, he would travel into the kitchen and open the pots and pans and bowls cupboard and play for the remainder of whatever time Jason and I are in there. But his absolute favorite piece is the strainer.

He can’t get enough of these glorious sieves. If he had his choice of a thousand toys or a strainer, my money would be on the stainer.

Ladies and Gentleman, the new and improved Johnny Appleseed.

A day in the life of Miah, with a strainer… 

Getting the dogs in on the fun

Enough of this stuff, on to watch Pooh Bear.

The Many Adventures of Miah

Excerpt of Our Life

Miah recently has loved playing with his breathing equipment. He thinks it’s hilarious to turn the nebulizer on and off, but mostly on and then run out of the room pretending like it wasn’t him that just turned it on.

Where do they learn these things…

He also likes to play “let’s make mommy know how it feels”. That’s where he uses all of his equipment and puts them in my face. He then scrunched his face and sniffs in and out, heartily. This tells me that I need to breathe into them.

At least he gets it, right?

This happens at least once a day.

We Have a Future Alpine Olympian!

Words cannot even describe how ecstatic and flat out knee slapping proud I was when Jeremiah came down that bunny hill for the second time and not only didn’t cry, but enjoyed himself. You could see the skiing bug nestle into his blood stream and pride beam on his face, just as it had mine 24 years ago. My son and I not only both started skiing at 23 months, but we actually wore the same equipment. I took the parenthood steps my mother and father set out before me, and I succeeded! My mom even said that he did better than I did, but I don’t really believe her. I mean I was doing 360˚’s the next week….

Ahem….

The greatness of seeing my Little Man achieve this tradition takes president that from day 1 of the CF diagnosis, they said, no basically shouted, that he needed to be athletic. If you truly knew Jason and I, this was always a concern. I consider myself to be outdoorsy fit, but since I was home-schooled, I was never able to prove to myself if I was worthy of the phrase “athletic”. Jason ran cross-country in middle school . Now he’s a chef. God bless him. He makes amazing food.

The first day we went, the wind chill factor could freeze the trunk right off an elephant. The wind also brought flakes of snow that drove forcefully into your face like stars at warp speed. I didn’t understand why all Miah’s caffufle was about until I went down without goggles on. My poor, poor, child. I don’t blame him in the least. But he had fun running around in ski boots with his cousins. And that kid could run. You’d think it’d slow him down a tad. It didn’t.

The second day we went, it was a balmy 19˚. (It really did feel quite lovely in comparison.) I bundled him up once again, and we headed out.

I prepared myself for a battle.

The battle was merely getting him to follow me to where we would put our skis on. He wanted to see everything and say hi to everyone. I finally corralled him, and put his skis on. He was excited to go! I scooped him up and headed to the lift line. We had done this previously (the first time), and just like the before, he loved it. He pointed at everything and was waving to the skiers underneath. He got pretty good at recognizing the cousins, in all their gear, and would yell out a little louder “hi!” for them.

We arrived at the top. No crying yet. And then something heavenly happened. He loved skiing. He was even brave enough to let go of my hands (I was still in front of him, ready to catch him)  and you could see the mix of confusion and enjoyment cross his face. To see my son balance perfectly and have reflexes like a cat, nearly brought tears to these blue eyes. When he let go of my hands to show he was confident enough to trudge on his one (if only for a few feet), broke my heart just a little, but made my heart LEAP about a thousand feet.

No, seriously.

My mom was right there with the camera, and was able to video record the whole thing. It took us probably 10 minutes to go down a 30 second run, but we both didn’t care. We went up another couple times, and by that time I think his legs were tired. After a break of french fries, he was ready to rumble again.

It was a perfect day. I couldn’t have imagined it better.

So here’s my baby, making this Momma fantastically proud.

The first day… He wasn’t as huge of a fan. But to be fair, the wind chill and snow was unbearable.

Ready to go for the day!

 

Taking a break with some french fries and pickles. A Nubs Nob tradition.

Ready for anything…

Tearing up the hills!!

Riding up the lift like a big kid! He surprised me by how chill he was.

Finally convinced him to put on goggles

The last photo of a great night

Please share with anyone who might be encouraged by this! Also, subscribe to more Many Adventures of Jeremiah! Follow me on instagram for even more pictures @kmcclearen or observe #themanyadventuresofmiah. Love to all!