Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Friday, April 17, 2015

Proof

Meagan has been able to do a lot of things her older sisters do at school through her special needs classroom - art, music, playing with friends, learning, and eating in the cafeteria.  She also got her very first school photo!
Meagan's first school picture! 
(Courtesy of: School Pictures of Georgia)

We are going to order the nice non-watermarked prints of course, but as pointed out by a few friends and family, this marked photo is ironically perfect for Meagan.  There is no better word to be prominently displayed across her photo. She is just that.  Proof.  Proof that doctors can't predict the future.  Proof that we shouldn't let best guesses dictate our love for our children.  Proof that no matter the odds stacked against someone, no one knows what we are truly capable of.  Proof that no matter the abilities, there is always a purpose, a meaning, and a light for every human life that only God can know.

A few weeks ago, as college basketball came to an end, Meagan was so excited to have a "Go X" shirt just like her sisters.  Being that Brian and I are both Xavier alum, we love to pass our love of the school and its basketball program on to our girls.  The older girls had helped Meagan make her shirt and on it we had put a quote from one of their favorite seniors, Matt Stainbrook, in which he said "People always talk about underestimating us......."...."but by no means is that us..."  He was referring to many of the main sports announcers who almost yearly always discount Xavier basketball to advance in the NCAA tournament despite every talent to do so. It spoke to me so much because I will never forget the day the perinatologist told us that about Meagan.  "She won't do much..."...."she will be a burden..."..."it will be too hard on your older four girls..."  Despite being grounded in our belief to always give our children a chance at life, those words would make anyone feel sick.  Stainbrook's quote seemed the perfect finish to Meagan's homemade Xavier shirt.  



As the NCAA tournament went on, and Xavier finally lost in the Sweet 16, we were so proud of our alma mater.  I posted the picture of Meagan and the shirt to congratulate our Xavier team and also thank Matt for such encouraging words, as they had transcended basketball for our family.  Fast forward to this week - we had a small snowball of misfortunes come across the family but were at the same time marking 2 1/2 months of Meagan having NO hospital stays or doctor visits which far outshadowed any struggles.  A box arrived in the mail and much to our (and our kids') surprise, it was a lovely gift from our Xavier family - and Matt had signed a small basketball for Meagan.  She was absolutely elated! She still has not let go of her "Go X ball" and truly appreciated the gift.  It brought a huge smile to my face, Brian was surprised and grateful, and our own little basketball team of the 5 girls were so thankful for the sweet gifts.  It was proof to me that even across the miles, her story can touch others and inspire joy.

It was in that moment that I looked at Meagan's picture again and realized my initial thoughts were true.  She was living proof of determination, love, and God's grace on earth.  I think I will in fact send her picture to my old doctor - but I will make sure he gets a copy with the oh so true watermark right on the front - Proof. 


A sincere thank you from our family to our alma mater for thinking of us.  You sure have made our day, and Meagan is just a "little" excited about her special present. 


Tuesday, March 31, 2015

March Updates Part 2 - Walking Together

Despite our disastrous family dinner out, we had a few good things happen this weekend.  As you all know, Meagan finally got her new AFO's a few weeks ago.  They are similar in that they still go to just below her knee, and they are for the most part still rigid - but the one difference is that the PT had the lab make the back of the AFO's with a hinge so Meagan can now flex and point her ankle joint.  Her new AFO's also have no tread on the bottom so she must wear shoes with them.  The shoes that came with her AFO's are, uh... quite large.  They look even bigger since Megs is such a small kid.  We refer to them lovingly as the Frankenshoes.  Since having Frankenshoes makes it a lot harder for Meagan to walk (because of the sheer weight of them!) we are going to get some much lighter more streamlined shoes to squeeze over her braces.  This should help her a bit in picking up her feet.

A few months ago, we were happy Meagan would finally try her walker.  If you remember, before that we spent about 9 months not even being able to go near it or she would scream. "Walker" was pretty much the secret forbidden word around here so we were very happy when Megs finally warmed up to the idea.  Since that time, we have been working with her by holding her up with a scarf around her waist so she really doesn't have to do "that" much work, but could get what it felt like to use the walker.  We are trying to transition out of that now - taking away some of those things so she gains a little more strength and a little more independence.

 Mrs. M, the PT, decided to start with working on some independent standing.  She stood Meagan up in front of her, got her feet planted securely and slowly let go of Megs.  As soon as her hands were leaving Meagan's sides, Meagan lost it - completely freaking out, crying, and asking me to hold her.  The same thing was happening when we were trying to get her to use the walker on her own.  Crying, or just looking scared and asking for her scarf over and over again.  Understandably, she probably likes our arms or the scarf because it gives her that security she can actually feel - but it was time for her to try it without that assistance so we can start building her stamina.

We finally had some success with this on Monday afternoon! Meagan loves rhythm so the girls had gathered in the living room and were telling Meagan "Let's march... march...march..."  Typically she will clap along and then want to try a little bit.  Well the first attempt didn't go quite as planned.  Introducing Meagan's stubborn side:



After some encouragement and a rest, however, she finally decided to give it a go.  Although no scarf, Reilly held under her arms for security - we don't need a face plant on the front of her head where there is no skull.  Not good!  Step by step Megs tried on her own and made it across our living room! If you notice the girls laughing in the video, it's because they are.  One of Meagan's struggles learning with the walker is how to coordinate.  She doesn't always get she has to pull it along with her.  So in the last week, I have been helping her pull it so it hits her bum, and then she knows it's time to "step, step" forward.  Well the girls hadn't seen this yet.  So, because the walker was hitting Meagan's bum over and over again as she inched forward, it was naturally hilarious to my elementary school age children.  Actually we have found anything having to do with their bums is pretty much the funniest thing on earth.  But hey, we roll with it.  I mean, why not?

Meagan's successful run



Later that same day, Meagan's PT and the representative from the mobility company that made Meagan's wheelchair both came over.  Meagan was measure for her own walker.  Woohoo.  When it comes, she will be able to take it to school and try it in the classroom.  Meagan's PT said if we keep working with her, she feels Meagan will be able to be independent in the house and at school with her walker.  She said for regular walking or longer distances (malls, a campus, stroll down the street, etc.. ) Megs will most likely need some sort of motorized device (wheelchair..etc.) but hey, that is just fine with us. 

So, despite the quite disastrous start to our weekend (or so I thought), it ended up pretty darn good.  Maybe one day, the therapists said, Meagan will be walking together with us.  What they don't know is that she already is.  There's just no other way to take this journey! 



Monday, March 30, 2015

March Updates Part 1 - Walking outside....

This weekend was a happy time for the family.  The girls got their third quarter report cards.  All A's and lots of great remarks from their teachers across the board. I was so proud of the girls, as was Brian.  We decided it would be a great opportunity to do what we normally don't do - go out as a family and celebrate their achievements.  It had been a hectic month - things had been stressful, and despite all of it, the girls had been so positive and even better excelled at school.  It was time to celebrate.

We went to a restaurant we have been to before as a family.  Just a local place - family friendly, noisy but not too noisy, affordable, and fun for everyone.  It was going to be a great night of letting the girls order what they would like, family conversation, and hearing the girls giggle and talk on their special night.  Well it didn't exactly turn out that way.

The funny thing about having a child with brain problems that include pressure issues, sensory issues, and many other things, is that you just never know what will set them off, when they will freak out, and if you will be able to help them through it or not.  This weekend, our family dinner was one of those nights for Meagan.  She.  Just.  Flipped.  Crying, screaming, asking for the door, wanting to go, wanting to stay, wanting her wheelchair, wanting us to hold her... the list goes on.  I knew from the first instant she started crying that there was going to be no calming her.  Any special needs parent knows that moment.  When it's just done.

As the dinner went on, she became worse and there was no soothing her.  I still have no clue what set her off - if anything - or if it was just one of those "off" nights she has every so many days.  In any case, I took her out of her wheelchair and walked outside holding her close as she cried and became increasingly upset.  After several minutes, my arms were becoming tired so I went back inside to have Brian take over.  He walked outside with her (where she still screamed), and the food arrived.  As much as my mind was occupied with Meagan's mood, I acted excited when the girls' food came.  I oooh'ed and ahh'ed over the yummy meals they had ordered, helped them get things situated, cut, served, and seasoned as needed, and then gave them happy smiles as they dove into their special meals.  As soon as they were settled, I walked to the front of the restaurant where Brian was still standing with a screaming Meagan and took her so he could go eat.  He insisted I sit down and enjoy with the kids, but, knowing he has less quality time with them during the week, and considering all of his hard working hours as of late, I insisted right back that he go enjoy a hot meal and fun chatter with his daughters.  He handed Meagan to me and went to eat.  I proceeded to ask Meagan "Are you scared?".... "Are you hurting?"  .... "Are you tired?".... "Are you hungry?".... to every question was a repeated answer of what I had just asked ..."yes I ______"  Basically, I had no clue what was bothering her.  And she couldn't help me because she couldn't answer my questions.

After a short while, Brian came out and took Meagan so I could go back in. He pushed Meagan's empty wheelchair, carrying her crying all the way and headed to the car.  I ordered boxes for my portion of the meal, settled the check, and took the girls to the restroom.  We walked outside and made our way to the van.  I was so happy the girls got a special dinner out, but at the same time, it was one of those parenting moments where I also felt helpless and emotional.  I felt so terribly they hadn't enjoyed the time with both Brian and myself, that they hadn't had Meagan engaged and enjoying their joy, and that we had to do our family dinner in shifts among the mayhem.  But then I heard a little voice from the back of the van.... "Thank you mommy and daddy for our dinner!"  It was so joy filled and giggly.  I then heard the other girls chime in with "thank you!" and "we had so much fun!" and "Is Meagan ok?"..............

It was at that moment it was apparent that nothing had been taken from them that night.  Sure, in the "normal" lens of life, their dinner was disjointed, interrupted, and fractured.  One parent was in and out, Meagan was missing as she was having the sensory meltdown of the month, and the dinner was rushed as we boxed some of our meals to go.  What kind of celebration was that for these girls that had been through so much this year, and triumphed with good grades and personal achievement? Apparently, it was a celebration worth thanking us for.... and as the giggles and laughs continued from the back of the car, I realized that for them, it was the perfect celebration.

It is nothing new for us as parents of four other kids to have walked out of the occasional restaurant, or concert, or other events where sometimes our toddler children acted, well, toddler-like.  But now as a parent of a child with brain and sensory issues, this is a much more complex issue.  I remember leaving a restaurant with Reilly when she was a young toddler because she was overtired - but - I knew she was overtired.  The next time would be better.  She would outgrow it.  With Meagan it's different.  One day she can be wonderful.  The next day it seems as though her brain is fighting itself, and there is just no calming her.  Or the light is the wrong way in the window and sets her off.  Or as much as she loves music, a certain sound rings in her ears just the wrong way and makes her scream.  Or someone looks at her in a way she doesn't like.  Or we say something to her that typically can be calming, but the next day sends her into the meltdown of all ages.  The brain is just so complicated.  And so are the consequences of its confusion.

As the kids woke up the next day talking about their fun dinner out, the memories of my face buried in Meagan's neck with tears of frustration erased.  As they chatted about which moment had been their most fun at the restaurant, the frustration of me asking Meagan unanswerable questions calmed. I think the night of me walking outside our family dinner, but still seeing the unending joy on our older girls' faces about their special night out was a reminder that in most ways, they always walk outside.  There was nothing detrimental to them about Meagan's behavior, and the fact that Brian and I had to trade off being at the table didn't ruin their night.

As the weekend subsided we had some pretty amazing things happen in the family.  It was almost completely opposite to our family dinner out.  But one thing did not change - the girls' joy.  They know Meagan and they know our family a lot more than I gave them credit for.  They know that not every celebration has to be perfect, and sometimes family dinners are a little different than what others may be used to.  But that's ok.  Because through all of this, the girls are still joyful.  They are thankful.  And they are selfless little girls with not one complaint.

  I'm not really sure why we have seen these sensory changes in Megs - but a lot has been happening with her in the last few weeks and we have noticed when she does make strides or grow, her ability to handle input seems to be diminished. We are hoping as the new things she is trying settle out, so will her meltdowns.

As much as I carry the guilt of those moments I feel seem lost to the older girls, (which I think is natural if you are a parent,) Reilly, Kaitlin, Anna and Maura show me time and again that God has bigger plans. As Meagan screamed throughout their dinner out, I felt helpless strolling outside the restaurant windows wishing we could just be together as a family. I was concerned the girls felt the disjointedness of the evening that was supposed to be their special celebration.  But then I looked in.  The girls were laughing.  Talking.  Eating.  Enjoying each other and the surroundings of a special night out.  They were frankly almost oblivious that I was outside with their screaming sister worrying about their happiness.  It was then I realized that walking outside, as frustrating as it can be, doesn't mean being marginalized.  It doesn't mean having a barrier from joy. Walking outside just encourages us to go to the window, gently rub away the fog, and find the joy. Looking in and watching the girls have such a fun time together helped me do just that.  Congratulations to the girls on such great report cards and thank you to Brian for always taking the walk outside with me.


**** ... Part 2 will follow this week on the exciting weekend events. :)

Wednesday, February 4, 2015

Knots

In general, knots just aren't a very good thing to have.  Knots in your hair - ow.  Knots in your jewelry - a pain.  Knots in your muscles - painful! But I have learned lately that sometimes, knots are a good thing.  

I came across a quote that really spoke to me lately:

“When you get to the end of your rope, tie a knot and hold on. Help is on the way.”


 I think of our path in life as a long rope - it may be straight at times, or may have curves, but there are also times where the rope seems to become severed.  We can see the other side, but have no clue how we will get there.  How do we jump across a path that has been so connected, and then becomes interrupted? How can we make the end of that part of the rope that is cut and frayed stronger so we can pull and stretch to reach the next section of our journey?  Th en I remembered the quote I had seen.  The extreme visualization that comes along with the words was the perfect answer - knots.

 With everything going on in the last several months, not to mention, last several years, I have realized that the little knots that have occured in the straight rope that is our path in life have actually been positive things.  For me, these knots come in many forms.  Physical - the friends that have stepped up to help us get kids from carpool, or the bus, or to and from activities when Meagan has had emergencies. Emotional - friends and family who have called, visited, or written to check up on us and on Megs. And sometimes, those who just ask "how are you?" Financial - that music job that calls up and hires me right when we have a bill due... or the unexpected refund check that arrives in the mail just before our account goes to zero.  Spiritual - the many prayers and special novenas that our faithful family and friends have offered on our behalf and for Meagan's well being and our health as a family.  All of these wonderful strong ties have given us the knots necessary to hang on, and keep moving forward.  All of these knots have proven the ever presence of God and His ability to always look out for us - no matter how that may come about. Help is always on the way with Him. 

I had a friend approach me a little while ago wanting to do a fundraiser for Meagan.  Realizing our situation, I was very tempted to say yes immediately, but, I also am a very stubborn person.  I realized while things were trying, and we were clinging to our "knots," there were also a lot worse things and I couldn't bring myself to agree.  One of my many weaknesses is having a hard time accepting help from others - I consider myself a caregiver and a multitasker - always on top of things... so when help is offered, my first reaction is always "no thank you." 

A few weeks later, and my dear friend asked again - she insisted.  She's as stubborn as I am, so I knew that she wasn't going to back down.  Her persistence made me take a step back and seriously consider it.  Perhaps this was another path God was showing me? Perhaps my stubbornness was actually blocking the next knot that would help us reach the others side.  After much self reflection, and coming to terms with the multitude of frayed areas in our rope, I decided to accept.  I had a twist for her, though.  The only way I would accept her doing a fundraiser for Meagan is if she let a good portion of the proceeds towards a charity of my choice.  She gladly obliged.  The charity I chose is CURE... many of you are familiar with this charity, or at least have heard of me mention it before, but in case you forgot, here is a very telling video:




The fundraiser has been a wonderful opportunity for us to pay it forward and give to other children who don't have the medical access that Meagan does. I'm glad I could think it through and set aside my pride to participate in such a wonderful event.   The funds that will go to CURE Hydrocephalus offer children the life saving surgeries that we have been so lucky to have had for Meagan every time she has an emergency.  The funds to CURE will give children with Meagan's same condition the knots they need to hold on and get to the next part of their journey. 

Some people have asked us why don't we use all the money for our own bills and struggles in caring for Meagan.  It is tempting, don't get me wrong! We all know the relief from getting rid of financial stress.  However, if we can even help one child who needs surgery or treatment, that is going to be a much better feeling from a much better action.  I'm a firm believer in giving more than we have, and taking only what we need.  And even in Meagan's fundraiser, I am staying true to that belief. And I will be stubborn about that. :) 

 We want to extend a heartfelt to all our family, friends, and even strangers that have participated so far.  If you know of anyone who may still be interested, you may pass on the link below. Thank you again to everyone for the knots in our rope - the thoughts, conversations, support, and especially prayers mean so much to us.




  If you aren't interested in the product or Meagan's fundraiser, but would be interested in donating directly to CURE, you can click HERE . 



"Coming together is a beginning; keeping together is progress; working together is success."


Thursday, January 29, 2015

I'm Not Sorry

I was trying to look up some new quotes to use in a blog about loving our children.   I decided to drop a few terms into Google and see what came up.  Below are some of the first results I read:


"Experts say you should never hit your children in anger.  When is it a good time? When you are feeling festive?"

"When children are doing nothing, they are doing mischief"

"The first half of our life is ruined by parents....the second half by children."

"The trouble with children is that they're not returnable."


Now anyone who knows me, knows I also have a hilarious side to my personality.  I have a great sense of humor, and can be sarcastic to a fault - yes, even about my own kids, especially on "those days."  And those are some pretty funny quotes. However, in light of a few events over the last few weeks, it made me think.....  All kidding aside, why is the default reaction to children and motherhood one of sarcasm and dismissal? I find this true with special needs as well. 

If anyone knows about bad days with the kids, I certainly do.  There are days my oldest has an emotional meltdown, while my second wants to constantly run off energy but it's rainy outside.  The middle one is wanting attention and doesn't know how to speak in an 'inside voice,' and my 5 year old feels that with all this going on, it is perfect timing to do something destructive, preferably something that takes a long time to clean up.  Meanwhile, Meagan is fussy or having a seizure day and wants to be held, or the dog needs to be fed and let out, and dinner still has to be fixed, among 500 other things that have to be put on hold. Even more challenging is when these things happen in public - when some of the girls are fighting while others aren't listening etc etc... If you are a parent out there, you totally get this.  And kids just have the best timing don't they? ha...

However, there is always 'someone' who feels the need to approach us and say "Wow, you must want to run away!."  But the worst is when I get questions about Meagan specifically.  To clarify, I love questions about Meagan and talking about her or educating others on how amazing she and her friends are. And typically, I see people leave from talking to us with a much more open heart and mind and it's a wonderful conversation.   What I mean by 'Meagan questions' being 'the worst' is when the reaction is one of pity or sadness.  This just happened at Target last week when a woman asked about Meagan's age and after I said "3 1/2," proceeded to ask about her small size, leg braces etc...  I dutifully and kindly explained in general about Meagan's life and after answering a few questions, the woman's response was "Wow I'm sorry you have to deal with that all the time!" and "Oh I am so so sorry for her.  Poor child." I really didn't know what to say, so I smiled and we parted ways.  I am sure the lady is a very nice woman - but...... she didn't get it.


Last week, we took the girls down to the dance studio to practice.  While the older four girls were reviewing their steps for their upcoming competition, Meagan was scooting around the other studio checking things out.  She was giggling and singing to herself, but then I noticed she was rather quiet.  When I looked into the room, I saw her just sitting there staring.  She was looking at herself in the mirror.  She just kept staring and then started doing things and watching her reflection perfectly mimic her actions.  She brushed her hair out of her eyes.  She looked at her eyes.  She touched her nose, her mouth, and her shirt.  Each time carefully watching her reflection do the same.  She seemed to almost be filled with wonder at how this was happening. I thought of the people who said they were sorry for her - and immediately felt sorry for them.  Here was my little miracle girl looking in wonder at every beautiful part of her.  Oh what those people are missing.


In the last week, we have remembered the anniversary of Roe v. Wade and within days also had the International Day of Acceptance.  Before Meagan, of course, I was not as aware of the latter  - but since her birth, I have learned a lot about it and how important it is.  I am also realizing how appropriate it is that the two days are so close to each other. They almost go hand in hand.  How can we accept diversity in our children when we accept it's ok to discard them? How can we celebrate differences when mothers are counseled that differences during pregnancy are "sad," "wrong," or "just too hard to deal with..."....  


I guess when I think about it that way, the comments of pity about Meagan or downing our busy life with our beautiful kids are not that out of place.  We breed those mentalities in our society.  We shape people to value life.....selectively.  We have moved child bearing from an honorable thing to a check off the to do list.  We have taken the blessings of our differences and used the knowledge to weed those out who would offer diversity in our world.


We can change that, however.  Through kids like Meagan, we can learn so much.  Differences can be challenging.  No one denies that.  They can even be scary.  And that's ok.  We are all human - we aren't perfect.  But we are also beings of learning.  We can take the intimidating nature of diversity and turn it in to something wonderful.  Something beautiful.  And by doing that, something familiar.  Every time we do that, the next step isn't as hard....and so it continues.  This happens within our own families, but then spreads to our extended family, our close friends, and then eventually to those strangers who see us at the store or school.


I have seen this happen in several areas of our life, including at my older girls' activities.  I am helping teach at a few classes at the dance studio now.  Typically while I am teaching, other dance mom friends will play with Meagan and watch her for me.  Last night, I came out and Meagan was so tired.  She was curled up on my friend's lap and very snuggly.  She was all cozy in her sweater, looked up at me, then buried her head in my friend's chest, and then fell asleep.  Meagan physically resting so comfortably on my friend was a perfect depiction of how we feel as a family - with the ability to "rest comfortably" in the friendships of so many near us who have not only had open hearts and accepted Meagan's differences, but who go the distance when we need that little bit of support.  Friends who don't bat an eyelash at helping her......who don't hesitate to help us.  Meagan's differences have actually brought our family togetherness with so many special people who have enriched our lives in many ways.  That's something the doctors won't tell you.



One of the most beautiful things I have seen is how love from Meagan spreads through  the community.....well beyond blood relatives who almost have the "obligation" to love her.... in to many hearts of friends, acquaintances and even strangers who never anticipated what was about to happen.  I have loved watching close friends become almost 'pseudo parents' to her if I am busy with one of the other girls, or teaching a class.  There is no hesitation to scoop Meagan up and just love on her.  Seeing her big twinkling eyes and her sparkling personality, it's almost impossible to resist being drawn to her.  So, to the woman at Target, (who I'm sure is truly a lovely person), I guess my answer is, I'm not sorry.  I'm not sorry Meagan came into our big, loud and loving family.  I'm not sorry my daughter has some challenges she has to work through.  I'm not sorry life is hard. But I am sorry that you won't see what our close friends see.  I am sorry you won't get to enjoy Meagan's beaming smile or her absolutely hilarious personality. I'm sorry you won't feel the warmth of her little body sleeping in peace on your lap.  Most of all, I am sorry that her differences brought on a judgement of pity for Meagan instead of the realization of joy in Meagan's soul.

As Mother Teresa said, "If you judge people, you have no time to love them."

Whether in the womb, or in the store, I'm hopeful that through kids like Meagan, there will be more love and less judgement for children with disabilities.  I'm hoping that as time goes on, and we have more people exposed to the wonderful differences these children offer, my internet search on quotes about children will change to more positive results. More awe at their little beings.  And more acceptance of all children, no matter how they arrive.

Let's send messages of love and acceptance, for mothers who may be facing a difficult prenatal diagnosis, and for mothers who have children already here facing different challenges day to day.   Perhaps one day differences won't be feared, but welcomed.  Let's give all children a chance to look in the mirror as Meagan did, and marvel at the wonder of their God given reflection. After all, children are the living messengers we will send to a time we will not see. How can we send them if we do not accept them from the start?




*****If you would like to do something tangible to "pay it forward" and honor life to help other children like Meagan, her webpage at CURE Hydrocephalus is still up.  Any donation is greatly appreciated by families around the world who do not have access to the education and medical interventions that Meagan does here in our great country.  Thanks!  www.cure.org/me/meagan ****




Tuesday, January 20, 2015

Oh The Places She'll Go....

"Being optimistic isn't always being happy.. it's taking what the world throws at you and saying "I'm not going to let this get me down."


We have had quite a week.  The van, as you know, had to be taken in to be fixed.  After a complete cluster of problems, we finally got it towed and to the collision center.  After a mess of other issues, it seemed to be on the way to being fixed.  However, the mechanic called us (who we have worked with several times in previous years for other things) and said that Honda had actually sent him all the wrong parts so he would have to wait until they sent him the correct parts which meant he would now be delayed until later this week. When I called today to check, Honda had sent only a few of the parts and one that had to be painted, was not.  So now we will have to wait for that part to be painted before it is installed... more delays.  Meanwhile we were on day 8 of a rental minivan and I had to call Avis to make sure we could extend.  Luckily the employee was extremely nice and worked really hard to find us whatever deals he could so we could get the lowest rate possible for the extra days.  It's a good thing I didn't think we were out of the woods yet because we woke up to a flooded downstairs bathroom and basement/garage.  The main floor bathroom and the basement apparently were the victim of a backed up pipe that was laid improperly under the driveway and is now starting to act up. It is going to be a big project to fix (digging up driveway, other drains, a tree and our basketball hoop) so for now we are just having a plumber come out to clean everything out through the line, and we will have to tackle the long term solution at a later date.  It's been stressful with the car and now water issues - a few doctor appointments had to be missed, I have had to call out of some of my teaching days, etc..etc..  I actually did end up laughing at all of this because the more I contemplated everything that has hit our family over the last few months, I thought about how unbelievable it all sounds.  But trust me - you can't make this stuff up. :)



Meagan thinks it's been pretty crazy around here!


Despite all the setbacks, we still have had to tackle some appointments and obligations and we have a lot to report!

School: The older girls got their first report cards from their new school.  Happy news all around.  Mostly straight A's, improvements in a few subjects where they had been lacking instruction previously, and even better, wonderful personal comments from each of the girls' teachers on each report card.  
Meagan is also thriving back at school.  She is bringing home art projects and notes about her daily "jobs" at school. Last week she made a snowflake picture.  The teacher said the other little girl in the class (who is a bit older than Meagan) loves to pair up with her and help Megs with her projects.  I love hearing how Meagan is not only making friends, but learning how to work well with others (that aren't her sisters).  It was also special because another hydro mom (Parker's mom) always has referred to the hydro kids as 'snowflakes' in the past - each unique and different, but each so beautiful.  I loved that Meagan came home with a snowflake picture.  




Neurosurgery Update: Meagan had her follow up appointment to get her staples removed and to go over everything with Dr. R since he had been away during her Christmas/New Years issues.  Meagan was a little nervous at first, but she is getting a lot better about going to certain doctor offices.  When we walked in, she said hi to the front desk staff.  Then, the waiting room TV started to play Frozen... well that was it.  She was in heaven! She scooted over to the little kids' table they have and said "Mama com'ere!!" I went over and placed her in the little chair and that's where she sat while we waited.  Perfectly content.  Perfectly happy.  Frozen was on, she had a Frozen dress on, and had listened to Frozen music in the car.  Her day was made. 


We saw the nurse first who removed Meagan's staples.  It went very smoothly, but I did feel badly because the incision on her neck is still so tender.  Luckily, the nurse was able to move really fast so Meagan was in minimal pain for minimal time.  Soon after, Dr. R's PA "Elsa" Blaire came in.  Meagan gave her a big hug and snuggled with her for a few minutes.  She showed Blaire some pictures and videos of what she had been up to lately.  Dr. R came in and went over briefly what had unfolded with Megs over Christmas.  He was very happy with her incision sites and how Meagan looked overall.  He felt her defects were at a good balance, and Meagan's mood was obviously great.  Meagan got a little shy when he asked her to sing him a song, burying her face into my shoulder (ha), but she perked up again and gave Dr. R a high five before he left the room.  We made a tenative repeat scan and appointment for July (and we hope Meagan sticks to that schedule!).

PT News: In PT, Meagan has been making some good strides in being comfortable with her walker.  It took months for her to even approach it without screaming, as you remember, and now she is comfortable enough to try it with assistance, and then recently has pulled herself to stand in it.  Her determination in her mind is definitely a little ahead of her body.  She has tried many times to use the walker on her own, but she is actually still quite unstable in her hips and lower legs.  She managed a step and then would twist, collapse, fall, or go face first into the carpet.  The good news is none of this has frustrated her to the point of not trying anymore, but the reality news is her legs/lower body just aren't "there yet" for her to use it on her own.  The PT came up with a great idea to help balance this - we took one of my really soft Irish scarves and looped it around Meagan's torso, just under her arms.  We hold the end of the scarf to lift some of her body weight and be the "balance control" while Meagan manages the walker and wahlah! We are able to help her use it as independently as possible right now.  With the scarf "harness," she will spend a good 5 minutes trying her walker.  She is fairly good about telling me when she's finished because she will either just stop and be breathing heavily (it's quite a workout for her!), or she will say "scarf off," or "no scarf"... which tells me "hey mom, I am so done. Get me out of this thing."  I'm glad Mrs. M (the PT) came up with this idea because any straps or harnesses are defiantly rejected by Meagan through screams, resistance, and basically giving up on the task at hand - so the scarf seems like a happy medium to let her use the walker and practice, but also give her the assistance she needs right now to actually walk in it as much as she wants.  





Orthotics news:  Meagan got fitted for her new AFO's today. (we will reveal her new color pattern when they actually arrive).  This time, there will be no tread and there will be a screw at the ankle joint to allow her some ankle movement when she stands or uses her walker.  Mrs. M is hoping that this helps with her balance because being able to access that ankle joint could give her a little more help in catching herself if she feels like she's going to fall over.  Mr. Terry (the orthotics tech) should call us when they come in and then we will go for her final fitting and get to bring them home!  One thing that will be new with her upcoming AFO's is wearing shoes.  With her current AFO's, Meagan has the tread on the bottom, so no shoes were worn with them.  This was done because of her weak legs and the fact that she couldn't lift her leg with an AFO and a shoe on.  Of course she has gained some strength so Mrs. M is putting her in to regular AFO's now and so Meagan will need shoes.  Meagan does not like shoes.  At all! She loves admiring others' shoes, but she cannot stand having shoes on her own feet.  Complete sensory melt down.  So we decided while we are waiting for her new AFO's and shoes, we want to tackle this as best we can.  We went to look at shoes with Meagan on numerous occasions and none would do. If you were ever shopping anywhere in North Georgia, you could probably hear Meagan's blood curdling screams coming from the stores we visited. She was fine... I was (God forbid)...trying a shoe on her foot.  (**insert eyeroll here**)  So we continued onward.  One day at the store, we once again were trying shoes.  I had to find something she would wear for fun here and there so shoes weren't her arch nemisis by the time her new AFO's came in.  We had just tried on a pair (with the same screaming result) when Meagan looked at the shelf and pointed at something.  "Ms. Emma shoes," she said.  Total confusion on my part.  "What?" I asked her.  She said "Ms. Emma shoes....".... then I looked and it dawned on me ... one of the Irish dance teachers has always commented on these cute leopard print pants Meagan wears.  The shoes... yep, they were leopard print.  Piggybacking on her reference to dance, I made a big deal about how they were shoes just like "Ms. Emma" and how we should try them on.  A few tears, but no screaming. Score! So now we have some "fun" shoes to wear so we can try to desensitize some of Meagan's fears/aversions to wearing shoes.  Although something tells me when her AFO's do come in, she will be demanding "leopard shoes" or "Ms. Emma shoes" to go over them... sorry kid... the AFO shoes do not come in leopard.  




We have had so many little "victories" over the last week, that you would think one of the many negative "events" would have put such a damper on it all.  But when I see my older girls happy and thriving, and I see Meagan having come so far with all the battles she's had to fight -  the car, the house, the bills - they just don't matter.  They are certainly setbacks, and that's a fact.  But if it's a fact, then why lament over it.  The other facts of the week are much more fun and joyous to focus on, and that's what makes the journey so much sweeter.  As they say, "when everything feels like an uphill struggle, just think of the view from the top."  I would say we are on a steep uphill grade at the moment (ha), but I think of what that part of a mountain trail is like.  It's hard, it's steep, and you can't really see the top yet - but - you can see glimmers.  Those bright glimmers of sunshine that come through the trees and almost blind you momentarily as you huff and puff up the trail.  We have had several of those glimmers this week, so I know the full view at the top is going to be amazing.  For now, though, the glimmers are plenty to keep us going.  

I find it rather fitting that I sat down to write this post today when we celebrate the legacy of Dr. Martin Luther King Jr.  One of his famous quotes certainly spoke to me this week, and I believe speaks to Meagan's journey every step of the way...especially in the times where it seems a bit challenging.....  

"If you can't fly, then run.  If you can't run, then walk.  If you can't walk, then crawl, but whatever you do, you have to keep moving forward."

And if Meagan has her way, moving forward is just what we're going to do! 





Saturday, January 10, 2015

Unhinged

When we got home from the store this morning, I was getting the kids out of the van.  I needed to get the groceries upstairs and get ready for a few students I had coming for lessons.  The kids got out, I got Meagan, and I pushed the buttons to slide our van doors closed.  The left door slid closed and latched.  The right door started to and then I heard a big noise....and within just a few seconds I noticed our sliding door was no more - it was literally hanging off of our van by a wire.  Seriously?? My first thought was disbelief - did that really just happen?  I had just been talking to my husband about how we were finally almost finished paying off the van and could breathe a little bit with car payments at least... with the van pushing 180,000 miles, I had voiced how nice it would be to be payment free for a little while and then hopefully trade it in for a newer used van later this year.....  Oops.  I supposed I should keep my mouth shut from now on.

It's funny how something literally coming unhinged can make me think how unhinged our own life has been over the last month.  There has been quite a lot (especially emotionally and financially) going on! But the events of this last week have me on cloud 9.  Meagan has been bouncing back wonderfully.  Her speech has slowly but surely been returning and we have had no issues with her incision this time (thankfully.)  She has been thriving back at school - proud of her new Frozen back pack and enjoying the time with her friends.  She had great OT and PT sessions this week - Meagan chose "table wiper" as her job on the chore chart, so the therapists were able to come work with her and help her complete her jobs in the classroom.  The only time Meagan cried was in the mornings going to the bus - but it had nothing to do with the bus.  What was wrong? Meagan had to wear a hat to school.  It was below freezing out so I had to put hats on her.  Meagan hates hats.  She has always disliked things on her head, (and I can't say I blame her), but she really needed the hats.  I decided this was one sensory thing we had to tackle and sooner than later since colder temperatures were in the forecast.  When she came home from school, I left our hat/gloves basket out in the hallway in hopes Meagan would play with them at her leisure and would find one she liked.  Sure enough within a day or so, I heard a bunch of noise in the hallway as I washed dishes in the kitchen.  I sneaked into the hallway to see and there she was - having torn the whole basket apart and she even had a hat on her head.  A Browns hat too! (Daddy would have been proud.)  So we will see what next week brings and if we have a little better luck with wearing hats onto the bus.

Loving her new backpack


Hats are fun now... right!?


Ready to wear her new little ghillies to her sisters' dance class!




Meagan also had a neurology follow up on Thursday morning.  I giggled as we waited in the waiting room - she insisted on looking at a "book" but all they had was a basket of grown up magazines.  Still, Meagan was adamant about holding one, so I grabbed one for her - as she sat there flipping through the pages I was just enamored with how "grown up" she suddenly looked.  We looked through the pages of ads and pictures before she was called back.  She seemed especially interested in the Rolex ad page (perhaps an influence of Uncle Brad?) When we got back to the exam room,  Dr. F couldn't have been more pleased.  He was shocked how happy she was so soon off a hospital stay and was very proud of all her progress over the last year.  Meagan was very compliant and did a great job at her check up.  She even gave him a fist bump on the way out.  She's come a long way from screaming through every doctor appointment.

Loving the Rolex ad... she better get a good job!



We of course got Meagan back to her usual therapy regimen at home as well.  Mrs. M started to come back for regular appointments and get Meagan back on track.  We have a lot of news to report! As you remember, before Christmas Meagan was finally getting comfortable with her walker.  She wasn't afraid of it anymore and would actually let us help her stand with it.  Mrs. M was happy with Meagan's progress so she said Meagan is ready for her next set of AFO's ! She wants her to have some custom made so she gets a little articulation in her ankles if possible.  She originally thought she could move her to SMO's (support only from the ankle down), but after examining Meagan, Mrs. M realized Meagan's lower legs and knees are still extremely weak and wobbly - so still needing the AFO's but hopefully strong enough to start getting some movement through her ankles.  I'm really excited for his because as her AFO's are now, she cannot move any of those joints so I will be interested to see what Meagan thinks of her new braces!   


After Mrs. M finished with Meagan, we had a few new goals.  First is to get Meagan's new AFO's ordered.  Second is to work on independent standing with Meagan - she wants her to get less relaiant on "leaning" and work more on building her core balance to hold her body up on her own.  Third was to get up on her walker on her own and stabilize.  Within a few minutes of Mrs. M leaving, Meagan was just sitting there staring at her walker.  I looked at her and asked "Meagan, do you want to stand up on your walker? Do you want to show me?"  She suddenly scooted towards the walker and sat in front of it.  She stared at it for about five minutes and then put her hands up on to the handles.  I grabbed my phone because it looked like she was going to pull up! The wheels don't have locks, however, so I had to keep one hand on the walker while holding the phone with the other.  What I saw next was pure bliss - Meagan reached and struggled and within a few short moments pulled her little body up on to her walker! She looked unsure for a moment so I reminded her to "look for the red" (which refers to her walker handles) ..... as she processed the instructions and moved her hands about to stabilize, I was shocked! She had just pulled herself up onto her walker for the first time.  The joy in her face at the end was the only validation needed - she was pretty proud of herself.  And rightfully so.  



With all we have gone through in the last month, (Dudley's diagnosis, close family member's diagnosis, Meagan's hospital stays and scares, etc...) what happened with the van this morning seems almost like icing on the cake.  I actually did cry about it.  But then I laughed.  And laughed some more.  I'm finding life has a lot of moments like that.  Crying and laughing seem to come together sometimes.  But I think that's by design.  As I sit here on this Saturday, I think how just two weeks ago I was sitting on Meagan's hospital bed holding her....leaning over her seeing her lacking muscle control or speech, seeing her body freak out and not knowing how things would work out.  I remember that fear and uncertainty - and seeing her now having come through all that, I can laugh at the van door.  It's very inconvenient and certainly not what we need right now, but I can laugh at it. It's just a car.  I have learned the time I really need to cry.  And I have to say this week I have not had many reasons to do so.  

It's amazing how out of such a snowball of adversity we have been able to have such blessings of happiness paint our life.  The craziness of our last several weeks would be enough to let anyone become unhinged - but with so much to be thankful for, we refuse to go down that path.  Just as the door hangs by the wire, we cling to the hope that these joys are here for a reason.  They are the wire holding us to the body of hope that gets us through almost any challenge - as sad or funny as it may be.  I'm so excited to see what comes for Meagan over the next few months.  It's amazing watching her transition from a little toddler to a little girl - a very special little girl no doubt.


Meagan being her silly self reading Uncle Mike's book


Meagan loves her Mickey/Minnie Mouse number cards


Fascinated with pancakes


A small favor from Meagan - if you could please go to one of her favorite nurse's websites.. HERE .... and like their page it would be wonderful.  Nurse Jennifer was the one with Meagan through several of her stays, but most importantly, the nurse who was with us through Meagan's worst night yet.  Her quick actions helped us get the on call neurosurgeon there in a timely manner, and her attentiveness has no doubt helped Meagan get where she is today.  We would be grateful if you could stop by Nurse Jennifer's facebook page linked above and give it a "like"... and if you love really good popcorn, order some! It's the least we can do for all she helped us with over the last few years and especially two weeks ago.  Thank you!!







Sunday, January 4, 2015

Snowball: Melt into Faith


Meagan did pretty well  through New Years Eve... she was a bit restless but slept on and off.  By New Years Day, I decided we needed to be a little more aggressive in waking her up and making her try to be up and about even if she didn't want to be.  She was still resistant, but, she seemed less groggy when I did try to wake her up throughout the day.  She played a little bit and seemed to show glimpses of herself again, but she still asked to go "goodnight" many times.  She still slept a lot.  By evening, it was clear that hopefully we were on the mend and could hopefully go home the following day. 

Waking up!


By later that evening, Meagan started to breathe heavily in her sleep.  I started to watch her and she would almost get so asleep she would stop taking a breath for a few seconds, then gasp, breathe heavily, and wake up only to try and fall asleep again.  I knew something was up because when she did this last time, we had the events of Saturday night unfold.  The nurse suggested we try to wake her up and keep her awake for a bit since her respiratory was falling so low - I agreed.  When we tried to wake Meagan up, though, she was resistant.  She just didn't wake up.  After several minutes of moving her, rubbing her hands and feet, picking her up, and basically disturbing her any way we could, she finally woke up and kept her eyes open.  But that's when I noticed the shaking - her eyes were constantly shaking..again.  She also was trying to speak to me and once again, just noise.  No words.  No clarity.  Just trying to speak and no success.  My radar immediately went up because this is exactly what had happened on Saturday.  The nurse came in and called in another nurse who luckily had been there the previous Saturday night and she said exactly what I was thinking "Oh my gosh, this is just like last Saturday."  We propped Meagan up, tried to talk to her, yet comfort her at the same time, and I noticed when I lifted her she barely had any head control.  She was trying to sit up but could not move her head or arms.  At that point, the nurse said she was going to page the on call Neurosurgeon. He of course wanted a repeat CT immediately.  We rushed Meagan down to the scan and then waited.  In the meantime, we gave Meagan more Motrin for any possible pain, and administered her seizure meds. (she had two seizures upon returning from CT).  I kept waiting for the thrashing to start - which was her final symptom the previous Saturday before she was externalized, but luckily, it never started.  Over the next several minutes, she seemed to calm down and just rest.  Her eyes were still insanely shaky, but her body seemed to relax.  She seemed like she wanted to pass out, so I let her.  I figured if it was just a "glitch" she needed the rest.  Dr. B came by after seeing another emergency and said that since her body seemed to be calming down, he was going to leave her to rest and re-evaluate in the morning.  He said on her CT her vents looked smaller so that was good and we would see if she stayed stable through the night.  Of course I did push back and question the smaller vents - which is actually NOT something you want in a slit vent kid - but Dr. B wouldn't budge.  Since Meagan's vitals were fairly stable and it was obvious he wasn't grasping her condition very well, I decided to let it go and see how she did.  I figured if she got terribly bad, he would be paged to come back.  If she didn't, then at least we dodged a bullet with another neurosurgeon diving into unknown territory and could talk to Dr. R at Meagan's follow up once he returned.  



Maybe not...wanted to lay down and cover herself with a pillow or sheet!



I'm not sure if it was just a recovery "hiccup," or a fluid adjustment, or all the prayers I said that night - but thankfully, Meagan woke up the next morning much much better.  Her eyes were still shaky, but her other symptoms seem to have subsided.  She had speech back and she had regained her head control again.  She did look a little puny, but after throwing up twice, she seemed to perk up.  Sometimes we will never know what was bugging her, but I was just glad to see her back to "baseline."  At that point we decided to really push her to get up in a wheelchair and go play - to see how she did with toys, interacting with others, and if we could get her to eat. 

It was fairly clear we weren't going to get her to eat much at that point - she still looked nauseous.  Child Life came in and got us a wheelchair.  They helped get her to the playroom where she perked up a little bit.  She became interested in the ball and basketball hoop so they wheeled her right in front of it.  She started to say "ready...??? go!" and then she would throw the ball in the hoop.  After a few times, however, she started to look a little 'green'.... she then threw up a little bit so we decided maybe she had enough basketball. :)  We cleaned her up and wheeled her up to the table where Ms. K and Ms. K (yep, two child life specialists whose names begin with K!) brought light up and music toys to the table.  Meagan was able to play there a bit more and her stomach seemed to calm down.  Before we knew it she was bossing everyone around asking for this toy, or that toy, or getting mad when a toy didn't work the way she thought it did - yep, Megs was on her way back.  Ms. K and Ms. K were getting such a kick out of Meagan - when they started laughing at her antics, I knew Meagan was probably on the road to going home.  

Looking a little puny when forced to sit up


After two pukes, she wanted to play

After the playroom, we saw "Elsa" Blaire (as Meagan calls Dr. R's PA) and we both decided if she continued to improve, we would be discharged.  Then at her follow up, we could talk about any lingering concerns or a few of the episodes Meagan had experienced during her stay.  I was comfortable with that and decided it was time to take Meagan downstairs to see if she would eat some food.  We made our way downstairs to the cafeteria where she promptly asked for chicken - when Meagan asks for chicken, I know she is starting to feel more herself.  It's one of the few solid foods she will eat fairly well and fairly often.  I decided to take her up to the lobby to eat because they have small tables just about her size where I could pull up her wheelchair.  She was very serious trying to sit up and nibble on some chicken.  I was talking to her about the different lights and colors around the lobby and Meagan was being her usual silly and cute self.  Next thing I knew, the family that had been sitting next to us approached me - the dad put a bag in  Meagan's lap.  I looked up and he said "just a little something for your sweet girl."  I thought it was so nice - I did tell him it wasn't necessary but he insisted that the gift was for Meagan.  Meagan opened the bag and found a little sock monkey inside.  She loved it and started to put it next to her in her chair as she continued to eat.  I told the dad thank you and thought his little act of kindness was so genuine and sweet.  After Meagan was finished eating, we made our way back to her room, sock monkey and all, and started to pack our bags. Meagan lounged in the bed and even snacked on some popcorn - all the while laughing and giggling.  It was so good to see those smiles. 


A very serious chicken eater


All smiles while snacking on some Cartwright's Popcorn 


Meagan's nurse went ahead and removed Meagan's IV so she could get dressed.  We packed our bags, and waited for the wagon where we packed all her stuff.  I picked Meagan up, and we said our goodbyes.  We have a running saying with a lot of the nurses and staff there when we leave in which we say "Hopefully we don't see you for a long time!"  We don't mean it in a bad way - but anyone who cares for medical kids, or has a medical kid themselves gets it.  We love love love Meagan's caregivers at the hospital - but really, we hope we don't see them for a long time because that means Megs is home with us thriving and doing well. :) 


We have a follow up with Dr. R soon in the coming week to have Meagan's staples removed and chat about the events of the last last few weeks.  Of course as soon as Megs got home she was incredibly happy to see her sisters.  She just smiled and loved on each and every one of them and melted into their hugs and kisses.  She also spent a lot of time getting reacquainted with her dog.  He still was in his cone for one more night, so she found it difficult to snuggle him, but she found ways to lean on him, pet him, and just love on him.  Unfortunately, we found out from the vet yesterday that we are probably looking at an 8 month window give or take with our sweet dog.  So seeing Meagan giving him so much love made me happy - with all she's been through, she must know more than anyone to never take a moment for granted.  She truly lives for every wonderful moment she has - she doesn't know any different. I love that about her because she reminds me how new and fresh every moment really is and how important it is to enjoy them to the fullest.


Meagan snuggling her puppy



We are hoping we have a long stay at home this time with Meagan.  She is so complex that this last trial has really taught me how wonderful Meagan's long term providers really are.  A very special thank you to the neuro floor nurses and techs - you know Meagan just about as well as we do and it is such a comfort when we are in hospital to have you at our side. Thank you to the Child Life specialists - you go out of your way to always bring Meagan something special to help her stay be as "fun" as it can be and help us to get her back to her "normal" so she can have a successful transition home.  And finally thank you to Meagan's neurosurgery team - of course Dr. R for her long term management (which goes without saying), but also to the two Dr. B's and Dr. S and Dr. M who all helped us manage her case during these last two consecutive stays.  We fully understand it is not easy to jump into any case, but especially a little complex miracle like Meagan and we appreciate you sticking with us, listening to us, and most of all, working with us to try and tackle what was best for her when Dr. R was out of town. 


Meagan back to her goofy self - it's what makes her so infectious!

Anytime Meagan has problems arise, it is always concerning and worrisome - but having problems arise with her usual trusted surgeon out of town was especially nerve wracking.  It was more of a test of our faith because the one person we trust most with her here was absent.  But then that's what faith is, right? Trusting even when we don't exactly see what the plan is - believing even when we don't know the outcome, and giving our worries to Him when we are in an unfamiliar situation.  At times over the last few weeks, Meagan felt so far from me.  The night she was the worst I had ever seen, I honestly was at a loss - it was the first time I felt fearful for the outcome.  We were so far from an answer, Dr. R was so far from her, and I felt far from grasping what was going on.  But then, as St. Monica said, "Nothing is far from God."  If nothing is far from God, then He is not far from us.  Which means our faith is there always to get us through.  I have learned in the last few weeks that when the snowball starts to build, we can conquer it through faith. We may not have the answers ourselves, but by melting into our faith, God will provide the clarity, the comfort, and the peace we need to see it through.

From our family to yours - we wish all Meagan's family, friends, and followers a happy and healthy New Year......

"We are at Jesus' disposal. If he wants you to be sick in bed, if he wants you to proclaim His work in the street, if he wants you to clean the toilets all day, that's all right, everything is all right. We must say, "I belong to you. You can do whatever you like." And this ..is our strength, and this is the joy of the Lord."    -- Mother Teresa