Let Me

A Letter From Meagan

This is me at birth......

This was me just before birth....and in several states, it was still perfectly legal for my mommy to terminate my life. As a matter of fact, it was what she was advised to do.

My cute little body wasn't enough. 

My sweet lips and pointed nose weren't enough. 

My personhood wasn't enough...because I wasn't perfect. I had fluid in my head and hardly any brain. 

But my mom thought I was pretty perfect though. She fought for me.

It wouldn't be easy......

My beginning would be harder than most......

But it was ok. 

God was with me. 

My parents were with me. 

And I felt love. 

Love that allowed me to feel joy even through my challenges.

It makes me sad to know that 4,000 babies of my generation are willfully killed each day....

....and those Mommies and Daddies suffer too.

Life will have hardships

....there will be trials and pain....

...but God is good.  

He helps us find the light...

...and joy through even the darkest days...

So please don't worry.....

....don't fear....

....just be.

Let's keep this the safest place on earth for our children.

When times are tough.....just hold me...

..and take my hand....

...not my life.

I promise there will be happiness.....

...there will be joy......

....there will be memories....

I may have to work harder at things......

but we can find the beauty in it all.

With help, I can thrive.....

...with help, I can find comfort

...and with help, I can rest.

I can touch lives in ways we never thought possible...

So let me experience....

...let me celebrate my Birthdays.....

....let me learn...

God doesn't make mistakes....

...so just love me....

...just let me see....

...what God meant me to be.

"America needs no words from me to see how your decision in Roe v. Wade has deformed a great nation. The so-called right to abortion has pitted mothers against their children and women against men. It has sown violence and discord at the heart of the most intimate human relationships. It has aggravated the derogation of the father's role in an increasingly fatherless society. It has portrayed the greatest of gifts -- a child -- as a competitor, an intrusion, and an inconvenience. It has nominally accorded mothers unfettered dominion over the independent lives of their physically dependent sons and daughters.........."

".........By abortion, the mother does not learn to love, but kills even her own child to solve her problems. And by abortion, the father is told that he does not have to take any responsibility at all for the child he has brought into the world. That father is likely to put other women into the same trouble. So abortion just leads to more abortion. Any country that accepts abortion is not teaching the people to love, but to use any violence to get what they want. That is why the greatest destroyer of love and peace is abortion. "

Loving Meagan

I was laying Meagan on her blanket the other morning to start working with her on rolling.  As I reached behind me to grab some of her toys, I happen to look back at her.  The sun was peeking in our window lighting up Meggy's sweet face.  The rays were around her in such a way, that it almost appeared she had a frame of light around her. She was the focus of the room.

As I laid toys around her blanket, I noticed Meagan staring up at the ceiling.  She wasn't 'out of it,' but almost seemed 'deep in thought.'  I looked at her little shirt and noticed it said "dreamer."  I wondered at that moment what her dreams were.  What was she thinking about? What does she wonder about? What are Meagan's dreams? Will God help me be strong enough to put her dreams ahead of my own?

All of these thoughts were swirling in my head due to a recent visit to the store.  As we were standing in line, the woman behind me asked if all of the girls were my children.  I told her yes, they were.  She then asked me, "Do you work?"  I immediately thought of my good friend Jenn, a mother of six, who always says "Which job would you like me to list?"  I simply answered, "yes," (as I'm sure the woman was well intentioned) and smiled to myself as I thought of the many jobs I do as a mom; caregiver, cook, nurse, bookkeeper, teacher, advocate, counselor, tutor, therapist, cheerleader, disciplinarian...and the list continues.  However, as the day went on, I couldn't help but think about that question.  I'm only human, and I started to think..... why is that always the question I get first? Am I not doing a job? Am I doing all I am supposed to be doing? Am I reaching my potential?

As the days went on, it still weighed on my mind.  I spent time catching up with some friends.  It was exciting to hear about what they were up to, or to read about all the accomplishments they had achieved.  My thoughts wandered again.  Yes, I do many jobs as a mother.  But had I made the "right" decisions on my path? Had I 'shorted' myself on some of my dreams to be where I am today? Then I looked over at Meagan laying there in the sun, and it hit me.   I, in fact, had made the right choices.  Being a mother, especially to a child like Meagan, was exactly what I was supposed to do. God saw my potential in life just as I had - He simply knew a better direction for it.

I think I have realized  loving my kids isn't enough.  Loving them while also sacrificing is actually what my vocation as a mother is all about. True love is not easy because it involves giving of myself and sacrificing on a daily basis for my girls  True love for my girls is challenging and difficult, yet incredible and rewarding all at the same time.

I wouldn't trade my "job" for anything.  I truly love what I do. It doesn't mean everyday is roses.  However, it doesn't mean on the bad days I love my girls any less, just as on the good days I don't love them any more.  My love is not based on what they do, or how they act. My love for them is because they are.  No, I didn't miss a word at the end of that sentence.  My children deserve my true sacrificial love simply because they are. Period.  My 'work' isn't only the physical jobs I listed above. I have now learned that my most important work is giving them myself, especially when it is hard for me to do so. 

.

I believe it is only natural to go back and forth and think about the past as I move forward in my life. It's what we do as adults at certain crossroads in our lives. And that's ok.  That is how I know I'm doing what's right for me. What is right for my family. What is right for my girls.  And it's also ok if that's not always easy.  As I read in a recent article,

"Real love is hard. Real love hurts. Real love is a mess. And real love means putting ourselves on a cross freely for the one(s) that we love."

I think that is what God was trying to tell me that morning.  It's ok to wonder.  It's ok to examine past choices.  But ultimately, I need to know what I'm doing is work.  It is important work.  My focus needs to be like the sun on Meagan that morning.  It's about more than what I want out of life.  It's about what God is asking me to do for the life of my girls. It's about five little girls who are counting on me to be stronger than selfish desires.  It's about five little girls who are counting on me to show them the true meaning of love.  It's about five little girls who are counting on me to show them how to give of themselves to better others, realize their own dreams, and know God.

Thank you Meagan for teaching Mommy the true meaning of sacrifice when I have those moments of doubt.  You are the light of my life, and one thing I will never doubt is that loving you truly is the best choice I could have ever made.

Rain, Rain, Go Away

It has been raining for pretty much 3 straight days here.  Pouring rain, random rain, cold rain, windy rain, misty rain.  You name it, we've had it!  So what to do on those rainy days to pass the time......


How about check out new textures...(she didn't like the puddles too much)

Have a PJ day at school with a favorite bear....

Relax in Daddy's chair watching a movie....

Invade Mommy and Daddy's bed when the wind scares you....

Get a tooth pulled....

Enjoy some chocolate and warm coffee with Hazelnut....

And why not practice some hard shoe on the covered part of the deck.

Oh, and get "rain hair!"  That's always the most fun part!

Making Connections

I want to preface by saying I am incredibly grateful for how Meagan is doing right now.  I don't take one thing she does for granted.   I also realize that Hydro is not a one-way diagnosis.  It is a multi-faceted spectrum.  I make sure to never forget that Meagan's Hydrocephalus is uniquely Meagan's Hydrocephalus.  It's important to remember her Hydro brothers and sisters who are going through more difficult battles, but at the same time, it's ok to honor her life by rejoicing in the things she can do too.

The one consistent truth about Hydrocephalus is that there is no comparison of Hydro kids.  As another Hydro mom always told me, the kids are like "snowflakes."  Each beautiful, yet each very very different.  It was the perfect description for me to grasp on to and remember as we go through Meagan's journey. I have thought about this and for us, I like to think of it as a rainbow.  Many colors, some bright, some faded, some prominent, and some peeking between the clouds.  But without even one of those magnificent colors, the rainbow wouldn't be as interesting. It wouldn't be that rainbow.

Meagan's journey is only her own, and my emotions surrounding it are only from that personal experience.  Just as the kids are different, so are all of our stories... and that is what makes a multi-faceted group of people, like the Hydro community, strong.  We each have points we can speak on that strengthen or reach some other mom out there who feels all alone in this mess.

 As I wrote a few posts back, Meagan is babbling now like crazy.  She is still making lots of sounds and still watching us closely as if she wants to say or do the exact things we do with our mouths and our voices.  Even so, I realize that with brain injury, there is always that two sided reaction to new milestones.  The first is of course happiness, that they have reached another goal, but the second is .... will we see the next goal met too? Or is this it? It's not a depressing thought by any means, because nothing will change Meagan from being Meagan, but, it is still something that crosses my mind every time she does something new.  I think it's more of a defense mechanism.  Preparing us if new things don't come, but then when they do, allowing us to have that joyous surprise that every new skill brings.

I decided lately since Meagan has shown "interest" in babbling and our speaking patterns, I would at least help her start to connect those with real life.  She babbles a lot, but, she does not associate sounds with definitive people or things just yet.  She says "dadada" at our dog, her sisters, looking outside, her dad, and the kitchen counter.  She says "mamama" to the dog, her sisters, looking outside, her dad and the kitchen counter.  You get the point.  The sounds are wonderful.  But I want to try and help her, if I can, make a connection between her sounds and actual people or things.  I want her to realize she has a new way of communicating with us if she can grasp the concept.

I started with "Mama" simply because I am with her almost all the time.  I did some simple things with her back and forth between us.  I have been putting my hand on her chest saying "Meagan" and then putting her hand on my cheek saying "Mama." I have done this over and over again, throughout the day.  At night, I let her lay next to me, and we continue the "Meagan.".... "Mama".... before she goes to sleep.  I was playing with her today, and I *think* she is starting to "get it" sometimes.

I'm excited to see her "thinking" as she watches me.  I know that little mind of hers has so much she wants to tell me. It's not technically the "correct" sign language.  It's probably not really "technically" much of anything.  But it's something that seems to work for us.  Meagan seems to like our little method, and so I stick with it. Just as each child is different, so are the methods we find that seem to help them.  If I can help her make even a small connection with that voice of hers, then I know her little world will open up so much more.  Making connections is a new color we can add to the multi-faceted rainbow that Meagan is. Each color that appears leads the way to new hope for us, and new hope for her future.  Hope that seems bright even among the darkest storm clouds. 

Neurosurgery and Pediatrician Update January 2013

Meagan had a few doctor appointments this week.  The first was her 15 month old check up at the Pediatrician (a little late at almost 16 months. Oops!)

First, Meagan's stats:
Weight: 14lbs 10oz.
Height: 29 inches
Head: 41cm

She is obviously still very underweight for her age, but, her Pediatrician is very good about it.  Dr. B said it is quite apparent Meagan isn't 'starving.'  She looks healthy and has an appetite.  She just had a rough start and some struggles getting going.  Dr. B said she is still concerned because Meagan gained a few months ago, then lost over a pound, then gained again, then lost....with no changes in her eating habits/patterns.  She doesn't like the unusual fluctuations with her already so behind in weight gain. However, she said she likes to stay positive, and thinks that giving Meagan another month to gauge her weight gain is perfectly acceptable.  She wants us to log what Meagan eats, and also call back in a month to give her the new weight.  If we are still working our way up the scale, we are good to keep watching.  If Meagan has another random dip, we may be revisiting the GI doctor to discuss more "tube talk."

Height is fine.  Her head circumference, ironically, is in the 2nd percentile.  (probably due to her severe synostosis).  She got her vaccines up to date and did really well at the appointment.  Except for our weight check in 4 weeks, we don't have to go back now until 18 months old.  Crazy how time is flying for my big girl! She is growing into a little toddler!

We also had her follow up from her December Neurosurgery appointment today.  To recap the situation, she had a large crater sink in her head literally overnight and became very fussy.  She wasn't tolerating sitting up anymore for longer than 1-4 minutes when she had been able to work on sitting for an hour.  She wasn't sleeping well in any position except flat and had also slowed down in a few other areas. Dr. R turned up her pressure two notches on her shunt valve in hopes this would solve the problem at least for now.  We have seen her head change drastically in the last four weeks.  It has really puffed out and she seems a lot more comfortable.

Meagan the morning her head sunk in

Meagan 2 days after her shunt reprogram - hints of fluffing out

Meagan 3 weeks after her shunt reprogram - totally fluffed out 

Today we first went for a CT scan for Meagan.  During the CT scan, they also put together another 3D reconstruction of Meagan's skull.  Knowing her head had puffed out, I was pretty sure the fluid did its job, and her bones were fine....but, to be sure Dr. R wanted to make sure all the plates and spacers were still in their correct places from her cranial surgery since it was just in September.  After the CT was finished we walked over to Dr R's office where he explained what everything meant.

Watching the ducks on TV before the scan

In short:
1.  Meagan's vents still look ok.  It is now just a monitoring situation and hopefully will continue to be stable for a while.
2.  Meagan's shunt looks good - it doesn't look to be pressed on, out of place, etc..etc.. so we are crossing our fingers our luck with her shunt will continue.
3. Meagan's plates from surgery are still in tact and in place.  The fluid has pushed out her head nicely, and everything from her cranio surgery in September seems stable.
4. Two of Meagan's sutures have slightly overlapped again and fused - the very top and the back. But, Dr. R is not concerned at this time with intervention.  He said since the front of her head is still nice and open, brain growth should still not be restricted.  Dr. R said to go in and do a cranio surgery for those small fusions would be ill-advised at this time considering the risk of the surgery and the fact that as of now, there seems to be no Neurological consequences for leaving it alone. He said if I really pushed him and wanted it done, he would, but it's not advised for cosmetic reasons in Meagan's case.

Side view of Meagan's skull - the left is the front of her skull from the side.  The huge space is the large area where she doesn't have bone anymore that they left open for brain growth.

Front view of the bones post-surgery.  You can see her top of her skull, then the large space, and the few pieces in the front.  The 'squishy' stuff behind the front bone is her brain! And the "stick-like" figure in the front is a view of her shunt going all the way through her head.

View from the side/back.  You can see where her top and back bones have decided to overlap and fuse again...stinkers! But, with the space in the front still leaving "breathing room" for her brain growth, this is no reason to risk a cranio surgery at this time.

Meagan's CT scan from today.  The white-ish areas you see is brain tissue.  The black areas you see are areas of missing brain.

No complaints here on Dr. R's recommondations! I'm very happy with not pushing him for surgery!   I am very glad we have a Neurosurgeon who is thorough, and only goes to the OR when absolutely necessary to Meagan's development or brain health.  I am happy Dr. R is not "surgery-happy" as some surgeons can be, and that he always sees it as a last resort.  He truly has Meagan's best interest and uninterrupted development at the forefront of his focus.  He said he will watch these areas closely, and if it ever becomes a true issue, we will go from there.

FINALLY.. first food after her scans!

All in all, a very positive day.  The only "negative issue" with Meagan's new shunt setting has been her sleeping in the crib.  We had just worked on sleeping in the crib in hopes of moving her into the room with Maura.  But, now she cannot tolerate sleeping flat for more than an hour or so.  Any longer than that, and she wakes up with a puffy head in front that is tense and full of fluid, and I imagine, she is uncomfortable. As soon as she sits up for a while again or lays at an angle though, the soft spot bulge relaxes back to being squishy and she falls asleep inclined. But, she is flourishing in her other areas again, and is happy so I use the word "negative" very loosely.  All in all, things are looking up ...  Meagan is just one of those kids who seems extra sensitive to any pressure changes, so, for now, we will just sleep upright and take everything else for the good!

It's A Small World....

Meagan has been working really well with her new in-home Physical Therapist.  Ms. M is almost like someone hand picked a "perfect" match for Meggy.  After a year of struggling with the state program to get Meagan the correct services, I will say that perhaps the struggle took place so we ended up with Ms. M.  She has a very positive attitude, is extremely knowledgeable, pushes Meagan to her limits, but also knows when Meagan just need to be picked up and snuggled for a minute to catch a break.

After today's session, she informed us that we would have a few weeks where she couldn't come to work with Meagan because she would be going on a trip.   I remember her mentioning before Christmas about a trip to Africa.  I asked today if it was recreational.  She told me that she was actually going over for two weeks to work with nurses and programs in Africa where special needs children are cared for.  She goes and sees many patients in the two week span to hopefully educate nurses and parents on how to better help their special needs children progress and reach goals, goals otherwise thought impossible.  

I was really taken aback by the conversation with Meagan's PT.  Her story brought to mind a charity we came across after Meagan's diagnosis called CURE.  For many children like Meagan in other parts of the world, there is no hope.  While we had to struggle with a doctor suggesting termination here, we at least had our own strength, education, and support system to bring Meagan into this world, and be her best advocate.  In other parts of the world, there simply isn't that education or support, and many children like Meagan are simply discarded.  One illustration that really opened my eyes to the whole situation was a video I found from CURE, describing how many local people in the area where CURE works deal with and view children with Hydrocephalus.  I have posted a link to the video below - and a fair warning, it is not for children, and not for the faint of heart.  It is the truth, but a brutal truth that has made a permanent imprint on my mind and heart.

CURE International is doing wonders in providing education, medical care, life-saving Hydro surgeries, and support to families who have a child with Hydrocephalus.  The work they are doing is literally saving lives, and giving parents hope again.  With January focusing in many aspects on the pro-life movement here in the U.S., culminating in the large Life March in Washington DC at the end of the month, I thought there was no better way to start off the month on the blog than by bringing to light this wonderful charity.  

I would highly encourage you to visit CURE's website.  There are details on the website about the work they do, what it entails, where exactly all the money goes, and what they provide to the Hydro children and their families.  (They also do extensive work with children who have many other birth defects and congenital conditions - we just chose to specifically highlight Hydrocephalus since it is what has touched us personally through Meagan).  To learn more about what CURE does in saving lives and providing hope, you can click HERE .  

If you are touched by the work the people at CURE are doing, as we were, and would like to make a donation towards a life saving Hydro surgery for a child in Africa where care and support is extremely scarce  you can visit Meagan's own donation page HERE . Also, please keep the CURE doctors and volunteers in your prayers.  Nothing is as powerful as prayer, and the work they are doing not only saves a physical life, but saves the world's soul, one special child at a time.

The world is vast, and there are many needs among our fellow humans.  From small to great, every need is important and deserves attention and prayer.  But something I learned today is that even in this great big world, God gave us all our own struggles so we can not only learn from them, but pay it forward through them. I was reminded of that today knowing Meagan's therapist is doing just that as she goes to Africa for the 5th year in a row to give a little of herself and her talent to better strangers' lives.

I hope that as we continue to highlight Meagan's story, it gives a little bit of light to someone's darkness, a little bit of hope to seemingly desperate situations, and perhaps makes this great big world seem a little bit smaller....small enough to know that even one life valued, one life saved, is worth it. 

Say what?

Meagan has slowly started to have one very obvious change since her September Cranial surgery ... she is babbling like crazy!  I saw the first inklings of it weeks after the surgery, and since then, I've seen waves of growth in the same skill area each month that passes.  I waited and watched to see if this was something lasting that was truly happening or only a momentary hiccup.  I'm fairly confident now in saying I think this 'new thing' is definitely here to stay :)

  It is like another switch has 'flipped' in her head since her surgery.  She used to coo or "yell"  loudly, but for the first time, she is babbling with all different sounds and letter beginnings.  It started with "dadadada" "nananana" and similar sounds.  Recently, it has morphed into d's, n's, m's, b's and a funny little sound she makes almost the same as when you 'shush' a child.  Sometimes it sounds like Meagan says "Shhhh." It's the funniest thing! She is starting to vary her tone within these sounds... almost sounds like she's trying to have a conversation with you, and she also is giving a loud "ACK" in almost a yelling tone when I make her do something she doesn't want to do (work on therapy, put her down when she doesn't want to be etc...)  I don't have any concrete proof this is definitely due to her surgery, but, the way it has all unfolded over the last 3 months certainly makes me think that there is a pretty good chance it is related.

In other news, I woke up this morning and went to get up.  I was in horrible pain! I couldn't even believe it.  I have a very high pain tolerance  and this was bringing me to my knees.  I thought I'd get up and try to walk it off, but I knew deep down that wasn't happening.  I've been having very bad back pain that I've let "sit."  I've used the ice/heat, pain meds, etc..etc.. to try and ward it off, but today it reached a whole new level.  Luckily Brian was able to come home quickly and I took myself into the doctor.  He did an exam and a CT scan and found I have a herniated disc in my L5 vertebrae.  It makes sense because this is right near the tailbone area, and this is exactly where I have felt the pain over the last week, and then my intense pain that started today.  It also makes sense with the tingling down my legs and the horrible sensation I get every time I try to roll, lean, get up from sitting, or the pain that radiates when I'm laying down. It is especially bad when I'm holding one of the kids or lifting Meagan.  So step two is off to the Ortho-spine specialist to get an MRI for a better picture and see where we go from there.  Medications, therapy, steroid shots, or a combination of any of those is a possibility so I'm anxiously waiting for my follow up appointment.  In the meantime, I was lucky to have a good friend take my older girls for the day, and a wonderful husband who has held down the fort all night.  Cooking dinner, handling the kids, feeding Meagan..and the list goes on.  The jobs are never done around here but he has done a great job minimizing my lifting and moving for the evening so I can rest.

The 'bright side' of me being slow to get up today,though, was catching Meagan in another babbling session. While she has a lot to "say," the times when she does go on and on is completely random, so it's been hard for me to catch it on video.  This morning when I heard her start to make noise next to me,  I took out the camera and started taping.  Of course the little diva stopped and was quiet upon seeing the camera... but then I was able to coax her to start up again.  If there's one thing the Ortho can't offer me, it's the kind of bliss and almost medicinal joy I can get from hearing my baby girl making sounds! It certainly made my day much happier and I'm so excited to see how her babbling grows over the next several months!

Make Everyday A New Year

This week, my parents were here visiting and my dad was working with Meagan on playing "Peek - A - Boo."  She got it after a few times and started lifting her own blanket. Again and again they would play, and every time, no matter if it was the 5th or 100th time, Meagan would smile and giggle with pride as she did it all by herself. There was no boredom and no monotony.  Every experience with Peek A Boo was like a new experience and brought joy and smiles to her face.

I know many of us hear from family or friends, or even from ourselves, a statement of New Years Resolutions. I have made them in the past, even last year. Typically the resolution - the firm decision to do something or not do something - has something to do with the way we live our lives, or act, or follow through with things we know are important.  It's a great gesture to think more positively, to do better the things we should be doing, or to get a jump start on the new year.  But watching Meagan's repetitive joy got me thinking...... why do we only talk about resolutions on New Years Eve?

While Meagan slept today, I wondered... what would her New Years resolution be? Would it be to babble more? To sit up unassisted? To crawl? To drink from a cup? Then, she woke up from her nap and looked at me.  And the first thing she did was clap.  What an amazing attitude my little girl seems to have.  All she has gone through and has going on... and the first thing she did when waking up was to clap.  I then knew... none of those things I listed above would be her resolution. Perhaps good goals... but those weren't what was important for 2013.  I imagine instead, Meagan's resolution would be to keep her bubbly attitude... waking up happy, enjoying life, and taking in all the great things around her. It would be to just keep going....keep trying... and keep being her best self.

After seeing Meagan wake up so happy, I thought, if I had to make a New Years resolution this year, it would simply be to do what I am already doing -  just try to do it a little better..but do it everyday. And if I fall short one day, to not wait until the next New Years.  It would have to be my everyday resolution.  If I don't wake up everyday and have the positive attitude to try and do better, I'm failing myself as a person, my kids as a mom, and my God as a humble believer.

This New Year, I will challenge myself to not live up to a one time resolution. I instead challenge myself to just do better everyday.  Keep being myself, keep standing strong, and rest... not in a literal sense, but to rest in each moment to be sure I am fully enjoying the gifts God has given me.  

What tomorrow brings is always a mystery.  Sometimes good, sometimes bad - so I need to be sure everyday I am living out my resolution to the fullest. Does this mean I can't have bad days? No.  Does this mean I'm going to wake up clapping? Also, no. ( I'd probably get a few curious looks. :) ) But it does mean that I can feel that way inside.  I can hold dear those who positively influence my life, and ignore those who don't. I can be comfortable in the times I know I'm doing right by my character and my family, even when others think differently.  I can grasp onto the moments that are life with my family and friends - just as Meagan does daily - and resolve to make everyday a New Year.

Happy New Year from Meggy and her family!