Life is full of choices... and this week, I've been reminded of just how many we have to make.
The kids have stayed up late every night for the past two weeks, why you ask? Because Hubby and I made the choice to let them. Why did we make that choice? because we stumbled across the series The Bible on Netflix and we started watching it. Ever since the first episode, they've begged to watch the next episode each night! So, we made a choice, and let them watch it, all of it, yes, even the crucifixion scene.
Daily we are called on to make choices, as people, as parents, and as Christians. All those titles come into play with every choice that we make. The choice I had to make for today weighed heavily on me for a day or two until we got to church last night. It's amazing to me how a Bible lesson meant for teenagers can have such an impact on my life as well. For me, my difficult choice this week, was this... to attend the Spring football game with my family OR go to Praise Team Rehearsal. I know, it sounds simple, but it wasn't. You see, I've made a commitment to my family, and we participate together in 95% of what we do. I say 95% because well, there are some things that we don't do together... work, praise team rehearsal, mens activities at church, "gender specific" chores. ((Yes, I know that's a totally different blog post, but yes, there are gender specific chores in our house... like the boys take the trash out, mommy and the girls fold laundry and wash dishes, daddy cares for the lawn.... it's how we live, just deal with it ;-)) So. That 5% makes up very little of our lives.
Last football season, even hubby coaching for the high school football team was a family commitment, have you seen how much laundry a football team can create? or how a bunch of football minded coaches take care in organizing an equipment room? or seen a large group of men try to figure out what size game pants need to be passed out every week? Yup, in steps the mommas who can organize, and for us, that meant many hours of me and the little girls washing, drying and organizing, and then taking the whole family to pass out jerseys and game pants and make sure that everyone was properly suited up for the games.
So, how does one make a decision between cheering on her favorite football team and attending a rehearsal? Well, eventually it's made pretty simple. She goes to youth group. And learns again about choices, and putting God first in all things. I know I know, it's not like I would be missing a church service, or keeping the kids from a Bible class, it's rehearsal. BUT. I made a commitment. To rehearse and to sing. I may never be the next American Idol (great job, Caleb!), thankfully, I'm finally to old to audition... but I love to sing, and joined the praise team at church as a way to sing praise and lead others to worship through song on Sunday mornings. And if I slacked off at rehearsal and sang without learning the songs or arrangements, well, God can take the not greatest voices and make them sound wonderful while singing His praises, but disharmony and wrong words just aren't acceptable.
So, I'll be at church rehearsing, with the two little girls in tow so that hubby and Bubba can be on the field with the team... knowing that I've made the right decision, to honor my commitment, and that I"m showing my children how to make tough choices by putting God first.
Thursday, May 22, 2014
Tuesday, May 20, 2014
Longest Week Ever... Again
I know, every week seems like it feels like the longest week ever! Whether it's waiting for payday (yay for paying bills!! LOL), waiting for a vehicle to be repaired (nope, hasn't been dropped off yet, :-)), or waiting for time to pass before it's the day to take a peek at Alexander again!! Yup, today makes it ONE... MORE... REALLY... LONG... WEEK... until we see the perinatologist next Tuesday morning to see how Alexander is growing!
It's kinda crazy, at that point he'll be 31.5 weeks done growing (normal delivery is at 40, and currently the doctors are suggesting that he's born between 36 and 37 weeks) and only about 5 or 6 weeks from being born!! ACK!! I'm not ready! But then again, what mother ever is? I mean, Alexander is our 6th child. We've got the infant stuff pretty well under control... feed, burp, change a diaper, rock to sleep, put him in the wrap and keep going with whatever else is going on! But the addition another person to the family comes with it's own interesting problems to solve... like, how does a mom make it to the grocery store, without forgetting things, or losing her mind while she's there? Answer... the mind will always be lost, and something will always be forgotten. How does mom make dinner when sh'es forgotten ingredients at the store? Answer... she's plays Chopped! with what's in the pantry. Where does everyone sit in the car so that there won't be arguments, and the carseats can be reached to buckle and unbuckle? Answer, where the seats fit, and they'll have to learn how to get along. How does a family get to places on time when there are small children and a newborn to deal with? Answer, well, they just do. Daddy gets mean reminding mommy of what time it is (sometimes, it's just necessary), everyone has a job to do and does it, and you just go! I guess what I"m really not feeling ready for is the remembering to pack bottles, and extra outfits, and diapers in two sizes, and yikes... I"m overwhelming myself for no reason, because it all works. As long as everyone works together.
And... I was going to say more... BUT, I'm being paged to pour some juice and snuggle a certain little potty trainer to sleep... it's rough being mommy ;-)
It's kinda crazy, at that point he'll be 31.5 weeks done growing (normal delivery is at 40, and currently the doctors are suggesting that he's born between 36 and 37 weeks) and only about 5 or 6 weeks from being born!! ACK!! I'm not ready! But then again, what mother ever is? I mean, Alexander is our 6th child. We've got the infant stuff pretty well under control... feed, burp, change a diaper, rock to sleep, put him in the wrap and keep going with whatever else is going on! But the addition another person to the family comes with it's own interesting problems to solve... like, how does a mom make it to the grocery store, without forgetting things, or losing her mind while she's there? Answer... the mind will always be lost, and something will always be forgotten. How does mom make dinner when sh'es forgotten ingredients at the store? Answer... she's plays Chopped! with what's in the pantry. Where does everyone sit in the car so that there won't be arguments, and the carseats can be reached to buckle and unbuckle? Answer, where the seats fit, and they'll have to learn how to get along. How does a family get to places on time when there are small children and a newborn to deal with? Answer, well, they just do. Daddy gets mean reminding mommy of what time it is (sometimes, it's just necessary), everyone has a job to do and does it, and you just go! I guess what I"m really not feeling ready for is the remembering to pack bottles, and extra outfits, and diapers in two sizes, and yikes... I"m overwhelming myself for no reason, because it all works. As long as everyone works together.
And... I was going to say more... BUT, I'm being paged to pour some juice and snuggle a certain little potty trainer to sleep... it's rough being mommy ;-)
Friday, May 9, 2014
NFL Draft & Doctors Appointments
Yes, yesterday was Draft Day, and Dr Appointment Day, both important days to our family for various reasons. :-)
This last Sunday at Church, Pastor started preaching a new series on Family. Ahh, the ups, downs, joys, sorrows and trails of family, and this particular week was about how to make our families stronger. The six ways that Pastor presented for strengthening our families were, Commitment, Time Together, Appreciation, Communication, Coping Skills, and Spiritual Health. As hubby and I sat in service Sunday, listening to Pastor, we were both randomly looking at each other, knowing what the other was thinking, and knowing how each of those things applied to our family, and how we've been working on improving in those areas. It was awesome. I know, that had nothing to do with Draft Day or Dr Appointments, BUT it did. and you'll understand as I keep rambling ;-)
So Draft Day, yup, I"m going to tell you all about that first, not because it's more important, but because I think I"m about to say something that someone else needs to read, and I don't want you to miss it, while you read on just trying to get to the part of the blog where I start talking about Super Tonka appointments! I don't know how many of you are "football wives/widows" but trust me, it really is a thing. Until hubby and I got together, I loved football. The game of football, I didn't really care which team was playing, and you can ask the man, I still stay pretty clueless on the divisions and how all that works, but when it comes to what happens on the field, I've got a pretty good handle on it. I even have a pretty decent three point stance :-)! But Draft Day. Waiting for pick 16, waiting to see what direction Jerry Jones was going to steer our Cowboys in, 150 minutes into the Draft, 160 if all the teams take their entire time... it was a really long wait! But we spent the time together as a family. Oh yes, all of us, eating junk food (Seriously, we had wings, tacquitos, potato skin, pizza rolls, and garlic bread leftover from our favorite restaurant), all gathered in the living room, watching, waiting, talking through the players, the teams, the choices, wondering what impact these young men would have on the teams that drafted them. We talked through the draft choices, their strengths, what they would bring to their new teams. And then I was wondering, what if we could draft our families?! Isn't that what we do when we choose our mate? We decide how they will fit with our ideal of a family, will they work in the "system" that we have instituted, are they worth changing the "system"? What about drafting our children?! Would we make the decision for the child that will be a blessing because of their own personal quirks, or would we all choose the child that was the EASY pick for our family? Who would chose the kids that don't seem to be easy on anyone? Wow, I'm really glad that that decision is left to God of which kid we get!! And as for the Cowboys draft choice of Zach Martin, an offensive lineman... well, without the right men in the trenches, the "superstars" of the team can never get off the big plays. I, well WE, are of the mindset that the line is the most important positions on the field, because without them, no plays, no matter how brilliant, will ever work.
And Dr Appointment day. I think we've "drafted" the best team of doctors possible, both for my care and for Super Tonka's care. (You liked that didn't you!) Doctor appointment day is quickly becoming one of my favorite days, hubby and I gt to spend time together, talking without being interrupted, and at times just alone with our own thoughts, but together, which all of you parents know, is nearly impossible to find that time together. Our doctors all seem very encouraging, yet very on top of the possibilities for not encouraging information to appear. We are seeing doctors and specialists within the same hospital system so thankfully, all of our care can be coordinated rather easily! Most of the information is quickly and easily transferred thanks to modern technology. But the part you really want to know... the OB said things look great and his heart beat is strong! They are listening to what the Perinatologist and the Neurosurgeon suggest for delivery and do know th
at I will not be allowed to go into labor on my own... since we live two hours away from the hospital where I will deliver. That could get ugly... We dropped off our copy of baby John's MRI to the neurosurgeon's office, along with a copy of his discharge papers from Florida Hospital. (The records people weren't moving fast enough for our liking in getting the records moved to where they needed to be ;-).) Then, there was the appointment with lunch, AKA dessert for lunch. Orlando Ale House, right next to Full Sail University, just go and eat either the Captain Jack's dessert OR the Captain's Nutty Brother. Just trust me on this one. Then, we were off to the perinatologist appointment for a high level ultrasound and more brain measurements! How exciting, I love seeing Super Tonka. It amazes me that we can see and watch so closely exactly how God is forming him, exactly how He wants him to be. \But what you really wanted to know... In the month between measurements, Alexander's left verntricle has grown from 13mm to 18mm, and his right ventricle has grown from 24mm to 39mm. The promising part in this growth is that his head has continued to expand, allowing room for probably brain development despite the extra fluid, he head is currently measuring at 33weeks, though he is only at 25w 5d gestational age. At this point the notes from the perinatologist say that the most likely mode of delivery will be by c-section, and that if the hydrocephaly continues at this rate, we may schedule c-section for 36-37 weeks depending on the neurosurgeon's recommendations.
So, please keep praying. Our next round of appointments are on May 27th, we see the perinatologist in the morning, the neurosurgeon right after that, and then the OB in the afternoon. And from there, we'll know more... at that point we will be 31 1/2 weeks pregnant, and likely only a month from meeting our baby boy! Yikes! How exciting!!
This last Sunday at Church, Pastor started preaching a new series on Family. Ahh, the ups, downs, joys, sorrows and trails of family, and this particular week was about how to make our families stronger. The six ways that Pastor presented for strengthening our families were, Commitment, Time Together, Appreciation, Communication, Coping Skills, and Spiritual Health. As hubby and I sat in service Sunday, listening to Pastor, we were both randomly looking at each other, knowing what the other was thinking, and knowing how each of those things applied to our family, and how we've been working on improving in those areas. It was awesome. I know, that had nothing to do with Draft Day or Dr Appointments, BUT it did. and you'll understand as I keep rambling ;-)
So Draft Day, yup, I"m going to tell you all about that first, not because it's more important, but because I think I"m about to say something that someone else needs to read, and I don't want you to miss it, while you read on just trying to get to the part of the blog where I start talking about Super Tonka appointments! I don't know how many of you are "football wives/widows" but trust me, it really is a thing. Until hubby and I got together, I loved football. The game of football, I didn't really care which team was playing, and you can ask the man, I still stay pretty clueless on the divisions and how all that works, but when it comes to what happens on the field, I've got a pretty good handle on it. I even have a pretty decent three point stance :-)! But Draft Day. Waiting for pick 16, waiting to see what direction Jerry Jones was going to steer our Cowboys in, 150 minutes into the Draft, 160 if all the teams take their entire time... it was a really long wait! But we spent the time together as a family. Oh yes, all of us, eating junk food (Seriously, we had wings, tacquitos, potato skin, pizza rolls, and garlic bread leftover from our favorite restaurant), all gathered in the living room, watching, waiting, talking through the players, the teams, the choices, wondering what impact these young men would have on the teams that drafted them. We talked through the draft choices, their strengths, what they would bring to their new teams. And then I was wondering, what if we could draft our families?! Isn't that what we do when we choose our mate? We decide how they will fit with our ideal of a family, will they work in the "system" that we have instituted, are they worth changing the "system"? What about drafting our children?! Would we make the decision for the child that will be a blessing because of their own personal quirks, or would we all choose the child that was the EASY pick for our family? Who would chose the kids that don't seem to be easy on anyone? Wow, I'm really glad that that decision is left to God of which kid we get!! And as for the Cowboys draft choice of Zach Martin, an offensive lineman... well, without the right men in the trenches, the "superstars" of the team can never get off the big plays. I, well WE, are of the mindset that the line is the most important positions on the field, because without them, no plays, no matter how brilliant, will ever work.
And Dr Appointment day. I think we've "drafted" the best team of doctors possible, both for my care and for Super Tonka's care. (You liked that didn't you!) Doctor appointment day is quickly becoming one of my favorite days, hubby and I gt to spend time together, talking without being interrupted, and at times just alone with our own thoughts, but together, which all of you parents know, is nearly impossible to find that time together. Our doctors all seem very encouraging, yet very on top of the possibilities for not encouraging information to appear. We are seeing doctors and specialists within the same hospital system so thankfully, all of our care can be coordinated rather easily! Most of the information is quickly and easily transferred thanks to modern technology. But the part you really want to know... the OB said things look great and his heart beat is strong! They are listening to what the Perinatologist and the Neurosurgeon suggest for delivery and do know th
at I will not be allowed to go into labor on my own... since we live two hours away from the hospital where I will deliver. That could get ugly... We dropped off our copy of baby John's MRI to the neurosurgeon's office, along with a copy of his discharge papers from Florida Hospital. (The records people weren't moving fast enough for our liking in getting the records moved to where they needed to be ;-).) Then, there was the appointment with lunch, AKA dessert for lunch. Orlando Ale House, right next to Full Sail University, just go and eat either the Captain Jack's dessert OR the Captain's Nutty Brother. Just trust me on this one. Then, we were off to the perinatologist appointment for a high level ultrasound and more brain measurements! How exciting, I love seeing Super Tonka. It amazes me that we can see and watch so closely exactly how God is forming him, exactly how He wants him to be. \But what you really wanted to know... In the month between measurements, Alexander's left verntricle has grown from 13mm to 18mm, and his right ventricle has grown from 24mm to 39mm. The promising part in this growth is that his head has continued to expand, allowing room for probably brain development despite the extra fluid, he head is currently measuring at 33weeks, though he is only at 25w 5d gestational age. At this point the notes from the perinatologist say that the most likely mode of delivery will be by c-section, and that if the hydrocephaly continues at this rate, we may schedule c-section for 36-37 weeks depending on the neurosurgeon's recommendations.
So, please keep praying. Our next round of appointments are on May 27th, we see the perinatologist in the morning, the neurosurgeon right after that, and then the OB in the afternoon. And from there, we'll know more... at that point we will be 31 1/2 weeks pregnant, and likely only a month from meeting our baby boy! Yikes! How exciting!!
Friday, May 2, 2014
When it Rains...
... it Pours!
My garage is drenched. Not to the point of mostly unsalvageable, but at 5:15 this morning... I would have sworn that I could swim in it!!
Hubby got in the shower this morning and was telling me that he didn't need coffee, he was wide awake thanks to only having cold water... so, I headed to the garage, like any good wife would. (Started the coffee pot on my way past it ;-)). We both figured the hot water heater had blown. Well, it's not the hot water heater... I walked in the garage to the sounds of a waterfall! Apparently, before the washer filled to rinse the diapers for the final time... the hot water hose burst off the back of the washer! It's connection was apparently rusty, and it had been running, for I don't even know exactly for sure how long, but probably since somewhere near 7 last night... I'm calling the water company later to see what kind of grace they will give us on our bill... So, long story short, waterfall, drywall (wetwall?), rusted tight valves that hubby had to break to turn the water to the washer off but leave the water to the house running... and I called the plumber as soon as they opened. Add to that the fact that one kiddo woke up puking... and has continued to vomit, and it's going to be a very interesting day!!
But, God is good, He's got this too...
My garage is drenched. Not to the point of mostly unsalvageable, but at 5:15 this morning... I would have sworn that I could swim in it!!
Hubby got in the shower this morning and was telling me that he didn't need coffee, he was wide awake thanks to only having cold water... so, I headed to the garage, like any good wife would. (Started the coffee pot on my way past it ;-)). We both figured the hot water heater had blown. Well, it's not the hot water heater... I walked in the garage to the sounds of a waterfall! Apparently, before the washer filled to rinse the diapers for the final time... the hot water hose burst off the back of the washer! It's connection was apparently rusty, and it had been running, for I don't even know exactly for sure how long, but probably since somewhere near 7 last night... I'm calling the water company later to see what kind of grace they will give us on our bill... So, long story short, waterfall, drywall (wetwall?), rusted tight valves that hubby had to break to turn the water to the washer off but leave the water to the house running... and I called the plumber as soon as they opened. Add to that the fact that one kiddo woke up puking... and has continued to vomit, and it's going to be a very interesting day!!
But, God is good, He's got this too...
Thursday, May 1, 2014
Cautious Optimism
That's the Neurosurgeon's words, that we have cause for cautious optimism where Alexander is concerned! To me, that's a weight lifted off my shoulders! In short, because I can't spell half the words in the report, the radiologists report said that they suspect that Alexander has Dandy-Walker Syndrome. This means is that there is a cyst-like growth in the rear of his head that pushes on the drain between ventricles therefore causing hydrocephalus because the cerebrospinal fluid cannot drain through the compromised drain. Approximately 1 in 2,500 people have some form of Dandy-Walker Syndrome, but there are many who don't even know that they have a "problem". The doctor said that there are many who do not have to have medical interventions, but there are also many who must have medical interventions and therapies. and we won't know where on that scale Alexander will fall, until after he gets here. The recommendation from the neurosurgeon is to let him bake as long as we can and that his delivery will be based on recommendations from the OB based on Alexander's head size as we get closer to his due date.In other News...
Do you ever wonder if God is simply testing your devotion to Him? Ever wonder if He really is trying to test what you can handle? Yup, I'm kinda feeling that way the last few days. I've been stressing about our bills, because well, trips to Orlando every week to various doctors appointments aren't exactly cheap on the gas budget, or the food budget for that matter. We've been handling it though. Trying to get a boost in my photography business, trying to cut our other bills down, doing everything we can think of to not make the kids feel like we're really sacrificing, but to trim down our bills. So far, we've changed our cell phone plans, cancelled Netflix, cut back on our eating out, working on reducing our water and power bills... does anyone else have any great ideas? Our power bill was reduced yesterday by act of God... our upright deep freezer finally kicked the proverbial bucket. I don't know exactly how old it was, but I do know that it moved to my parents house from my grandparents house in 1994ish, we inherited it from them a few years ago, and it has served us faithfully since then... so it was time for it to go, just really, it could've happened when it was nearly empty, not mostly full. Hubby's description was the most accurate, it smells like death. All our meat was in various states of defrost, the stink had started, and the cardboard that was in there already had the smell stuck in it... so that was a painful trip to the trash can.
Also, we got to take the little girls to Disney!! Hubby had a work conference that the girls and I tagged along to, and they offered "cheap" tickets at conference prices for after 4 (4-11 is plenty of time for a rather preggo woman and two young girls anyway) the same week that hubby's bonus came in for being awesome at work! I'm not sure who had more fun, me or the girls, it definitely wasn't hubby. He could live without ever knowing that Disney existed.
All in all, it's a been a week full of ups and downs, but really, it's mostly ups. We still have food to eat, we still have enough money for gas in the tank, the A/C is shot in the Suburban but its windows work, there really isn't much that can be thrown at us to keep us down!
Thursday, April 17, 2014
What's in a Name?
What's in a name? That which we call a rose by any other name would smell as sweet. - William Shakespeare
A name is so important. Not only is it what you are called by, but it's your title, your reputation, your history, all rolled into just a few words. We decided on Alexander's name a LONG time ago... before I was obviously pregnant, before we knew he was a boy, before we knew he was destined to be required to be a fighter. We really like the movies of wars, I know we have issues. But when you think about those movies, they are legend mixed with a little history and even some Biblical references. Think about 300, Troy, Alexander....
Then we looked up the meaning of the name Alexander... and learned that it's heritage is Greek and it means helper and defender of mankind. What a name to live up to! Of course, our first thoughts were football, being that the hubby nor I are small people, we're guessing that Alexander will be built solidly, and that's perfection for a lineman. Think about it, the quarterbacks, running backs, and linebackers get the majority of the fame and glory for playing amazing football. But if it weren't for the offensive and defensive lines, those boys/men would never have the chance to do their jobs. There's a reason the "Great Wall of Dallas" will forever go down in history, that stories like that of Michael Oher will live on; without the protection and aid of those men, the Cowboys of yesteryear would never have gotten to where they did and there never would have been the story of "the Blind Side". Even now, knowing what we think we know, and knowing the fight that Alexander has before him, we think of the examples he has that went before him, fighters (both physically and mentally) Alexander the Great, Alexander Hamilton, Alexander Graham Bell; all men who chased their dreams.
His middle name will be Luke. My first thought of course was Luke of the Bible. Apostle, helper, doctor... and then we looked up that name, of Latin origin meaning Light. Just like the Bible says in Matthew 5:14 "You are the light of the world. A city set on a hill cannot be hidden." Wow. so we've saddled our son with the name Alexander Luke... A helper and defender of man who will also be a light. So glad it's not my name ;-).
Then we were thinking. So many people I see that call their children, fighters of all things from cancer, to mitochondrial disease, to autism, to debilitating allergies, they call them their superheroes. I completely believe that they are Superheroes, sent to teach us to truly love, to fight our way through life, these kids are so much smaller and many frailer than we will ever be, and yet they go through so much. So, I was thinking, that Alexander (or Xander as he is known is certain groups of our friends), needs a superhero name. Much like Batman and Superman have alter egos, Alexander needs one as well. My mom hit the nail on the head. Alexander will be known as "SUPER TONKA". Hubby's nickname since his teenage years has been "Tonka", because he was as tough as a Tonka truck.
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| So it's not the greatest picture... it was still healing... |
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| Ok, so it was a mirror picture... but you get the idea... I made that shirt when I was pregnant with John... |
Now... to find a cape!
Wednesday, April 16, 2014
Feeling Overwhelmed
Overwhelmed. It's becoming all too common of a feeling. It seems that no matter how many "ducks" I have rearranged to go into the row that I need them in, there is always something that comes along and "unrows" my "ducks" and it's really starting to get annoying. I tell people often that when my children aren't listening it's like herding frogs trying to get them all headed in the right direction, and right now, I feel like sorting out our lives is like herding frogs, or maybe lizards...
I got an email. I love and hate that email all at once. It offered a chance to talk to and commiserate with a mom of a child with hydrocephalus, as only mothers facing similar lives can commiserate together. But it also offered up the reality of a scary proposition. Apparently, the average bill for the surgery that Alexander will likely need within days of his birth is $30,000. and that doesn't include the time he will spend in the NICU, his delivery, my care, or making ourselves available to that care. And that's if his surgery is "normal". While I hate that the price tag of modern medical miracles is so expensive, I am also extremely grateful that we have the access to that medicine. I'm left wondering now what insurance will pay of that, will his care be normal, what interventions will he need beyond that... and yet, I also know that my God is a great big God and He can do amazing things, including having it in His great and mighty plan to have us give birth to a perfectly healthy boy that needs NO medical interventions EVER.
I have heard a time or two to just let go, quit planning and trust God to heal. Well, I do trust that God will heal, but I also know that sometimes His will is not our own. Maybe for some reason it is His will that we have a son who needs medical interventions, maybe this is His way of showing us where He needs us to be in life. Maybe I'm the loud mouth that will work to educate people on Hydrocephalus and raise money for research for a cure! Yup, you read that right, currently there are only treatments for the symptoms of hydrocephalus, no cure is currently available. After some quick research, I find that in America alone there is approximately $1 billion spent annually on the treatment of hydrocephalus, and that there is not nearly that much spent on researching a cure for the disease.
Through it all, I keep praying. Keep asking God to give me a perfect, healthy boy. But, I will continue to prepare for my son to need the medical interventions that he is expected to need. I will prepare to get him all the care he may or may not need. But I will also prepare to continue to attempt to educate people about hydrocephalus, the need for a cure, and the care that goes into an abundant life for those living with hydro. The song that's been playing in my mind today... it's been quite the comforting ear worm, hope it is for you as well...
I got an email. I love and hate that email all at once. It offered a chance to talk to and commiserate with a mom of a child with hydrocephalus, as only mothers facing similar lives can commiserate together. But it also offered up the reality of a scary proposition. Apparently, the average bill for the surgery that Alexander will likely need within days of his birth is $30,000. and that doesn't include the time he will spend in the NICU, his delivery, my care, or making ourselves available to that care. And that's if his surgery is "normal". While I hate that the price tag of modern medical miracles is so expensive, I am also extremely grateful that we have the access to that medicine. I'm left wondering now what insurance will pay of that, will his care be normal, what interventions will he need beyond that... and yet, I also know that my God is a great big God and He can do amazing things, including having it in His great and mighty plan to have us give birth to a perfectly healthy boy that needs NO medical interventions EVER.
I have heard a time or two to just let go, quit planning and trust God to heal. Well, I do trust that God will heal, but I also know that sometimes His will is not our own. Maybe for some reason it is His will that we have a son who needs medical interventions, maybe this is His way of showing us where He needs us to be in life. Maybe I'm the loud mouth that will work to educate people on Hydrocephalus and raise money for research for a cure! Yup, you read that right, currently there are only treatments for the symptoms of hydrocephalus, no cure is currently available. After some quick research, I find that in America alone there is approximately $1 billion spent annually on the treatment of hydrocephalus, and that there is not nearly that much spent on researching a cure for the disease.
Through it all, I keep praying. Keep asking God to give me a perfect, healthy boy. But, I will continue to prepare for my son to need the medical interventions that he is expected to need. I will prepare to get him all the care he may or may not need. But I will also prepare to continue to attempt to educate people about hydrocephalus, the need for a cure, and the care that goes into an abundant life for those living with hydro. The song that's been playing in my mind today... it's been quite the comforting ear worm, hope it is for you as well...
Because He Lives
God sent His son, They called him Jesus
He came to love, Heal and forgive
He lived and died, To buy my pardon
An empty grave, Is there to prove
My Savior lives
Because He lives, I can face tomorrow
Because He lives, All fear is gone
Because I know, He holds the future
And life is worth the living, Just because He lives
How sweet to hold, A newborn baby
And feel the pride, And joy he gives
But greater still, The calm assurance
This child can face, Uncertain days
Just Because He lives
And then one day, I'll cross the river
I'll fight life's final war with pain, And then as death
Gives way to victory, I'll see the lights
Of glory and, I'll know He lives
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