Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Saturday, December 31, 2011

What a Year

Here we are.  Hours from the end of 2011.  I was thinking back on my state of being this time last year - we had been through the miscarriage in the Fall....and we were trying again to get pregnant.  Little did I know, I'd get a positive test the next month in the early weeks of 2011....and our lives would forever change.

We have been through quite a lot this year....and it is quite obvious at the one event that dominates most of our 2011...Meagan's birth.    I could lament on the weeks surrounding Meagan's diagnosis of severe Hydrocephalus... I could dwell on all the negative emotions I felt and overwhelming feelings I had.  I could certainly talk more about the incredible hardships of the delivery, and the weeks that Meagan was away from us in the NICU..... and there is no doubt these last months of 2011 have been quite trying with her medical issues and new problems like seizures.  I could almost write a whole book on financial struggles, and how many "zeros" we are in debt. But... I won't. 

One of my New Years resolutions is to be more positive.  And I'm going to start now. It doesn't mean that I can't have a bad day every now and then -- I will allow myself some slack .... but I certainly will try to be more positive overall, and not always dwell on the negative things that happen to our family.  I've always known my family is the most important thing in my life .... but I"ve realized this year .. through all the negativity ... we have only gained a big positive - we are that much stronger... that much tougher... and that much more loving as a family. So why give any heed to the negatives that tried to pull at those bonds.

I would like, instead, to sum up the year in one word: gratitude.  Through all the ups and downs, through all the hardships, I am SO incredibly grateful for 2011.  It might sound crazy .... but it's the truth.  Matter of fact, it's about as honest as I can be.

If it weren't for my miscarriage, I would have never conceived Meagan.  If it weren't for conceiving Meagan, I would never know how strong we were as a family.  If it weren't for going through her hardships, I would never realize how loving my family can be.  If it weren't for her setbacks, I wouldn't realize how blessed I am to be her mother. If it weren't for this special child, I would never know how truly giving and loving my 4 older girls are from the very fiber of their soul.  And without any of this, I wouldn't realize how God truly is present in my life. Everyday.  Every second.

I am so thankful that 2011 happened to me.  I was entrusted with.. not "given"... but entrusted with... one of the most special gifts I think God could have given me - a special child.  One who needed parents who said "Yes" no matter what they were told... parents who would truly offer unconditional love to her. One who was meant to have 4 older, loving sisters who will always be there by her side.   Everytime I look at Meagan, I thank God she is with me. I think how many lives she has already touched....and how many she will touch.... and say "Thank you Lord."  It is incredibly scary to think she may have not made it to her birthday if she had been in another family - and I thank God everyday for trusting that we would see the greater plan through all the pain....and with open arms, accept Meagan into our lives.

2011 was also a big year for our faith.  With everything that we were handed, it would have been very easy to be angry with God.  And to be bluntly honest, there have been times I have asked "why?"  But the answer I always hear is "Because I know you can do it."  My relationship with God personally... and our relationship with God as a family is so much stronger because 2011 happened to us.  It would have been easy to walk away - to blame God and slowly drift away from our faith.  And one thing I learned for certain was that ... you know what? I do not understand.  I don't understand why we were given Meagan... I don't understand why Meagan is made to suffer as she does .... I don't understand why we are left with such an uncertain future.  And this lack of understanding is exactly why I also have come to know that the only way to sift through all of this is to turn closer to God.  Grab on to our faith.  Trust that He has a plan for us, and for her.  And know that by coming closer to Him, the journey, which seems impossible at times, can absolutely be successfully navigated. 

So, in my new goal of positivity, I will gladly say THANK YOU.  Thank you 2011 for blessing us with all your ups and downs....all the hardships....all the doubts.  It is through this trying year that we have grown the most as a family.  It is through this trying year that we have grown most in our Catholic faith.  It is through this trying year that we have the strength to look forward to 2012, and say "Yes" once again... to whatever lies ahead. And those are the things that matter. 

Happy New Year to all.....and remember....we are given....yes.. given....tough times.  These challenges are a gift so we may shine even brighter when we emerge on the other side victorious, with those we love by our side.

A Picture Says 1000 Words

Friday, December 30, 2011


Meagan's congestion and gagging didn't improve much.  I called back the Pediatrician and she suggested taking her into Children's for a more thorough suctioning.. and then continuing with the breathing treatments more frequently.  I headed into Children's with Meagan... got checked in and told them what had been going on. 

The ER doctor finally came in... after discussing Meagan's history and her recent bad cold... the doctor asked me "Have you had her checked for a shunt malfunction? This could be due to a shunt malfunction..."

I stood there dumbfounded.  Really? A shunt malfunction? Because my child, obviously sick with a bad cold, has mucous in her body??

I said "No, I'm pretty sure it's due to her cold and I just need her suctioned..."

The doctor replied "Are we sure this isn't due to a shunt malfunction? She may need a shunt series!"

I looked down at Meagan.  There she was, incredibly congested, but, nonetheless, looking at the ceiling lights, cooing at the nurses, and playing with her hands...  Her head circumference hadn't gone up... she didn't have "sundowning" in her eyes... her fontanel was nice and squishy and dipped inward.  She had absolutely NO indications of a shunt malfunction.  She didn't even have a fever indicating infection.

The sarcastic side of me took over after making this observation and finally said to the doctor... "I don't know.. you tell me."


Finally, Meagan got the suctioning I had originally come in to get .... they watched her for a bit, and her lungs cleared up.  She had no more wheezing.  Yippee.

The doctor came back in and said she felt like they should keep Meagan this weekend.  "Why?" I asked.  I was really not given a straight answer.  The best I was told was to "watch her."  I looked at her oxygen rate - 100%.  Her blood oxygen - 100%.  Her breathing - clear.  Her heartrate - good.   I asked again and the doctor said "Well, she could have more issues with her mucous."  Wait. I thought just a minute ago you told me mucous was a sign of "shunt malfunction."  I pushed back and said that everything else looked fine - and that our Pediatrician's office had clearly stated for us to come for suctioning.... since everything else checked out, the suctioning seemed to be sufficient and we'd be going home.

The doctor asked me what if Meagan had trouble and I didn't wake up to help her... scary, yes. But also yet another 'excuse' of why this whole thing was "snowballing" into some reason to keep her in the hospital over the weekend.  Needless to say,  I had to tell the doctor "no" several times..  We were there for a suctioning..and we'd be going home. Even if I had to sign an AMA.  She finally got that I was serious..and worked it out so I didn't have to sign an AMA, which was very nice of her considering what the insurance implications could have been.  Meagan got checked by the nurses one more time, and she sounded much better. Still no wheezing in her chest, and she seemed comfortable.  We were ready to go home.

I'm glad Meagan got a little help tonight and I'm grateful for the suctioning done by the respiratory therapist to help with Meagan's congestion.......but it also taught me what little some ER doctors really know of Hydro or kids with shunts. Mucous? As a sign of a failure? Really?  And to think if I hadn't been educated on the matter, she could have spent an unnecessary weekend in the hospital...being exposed to goodness knows how many other new germs.....going through a very unnecessary round of CT Scans, x-rays, bloodwork, and the like.  I'm glad we avoided all that, and that I had the proper information from her Neurosurgeon and other Hydro families on the issue.  Just goes to show how important it is for parents of kids like Meagan to stay on top of all current information and make sure only the appropriate medical treatments are applied depending on what she came in for  Kids like her go through enough.  Here it was she just has a bad cold and she was almost thrown into a whole shunt series and a weekend hospitalization for nothing. 

We are home now -- she is doing 'ok'..but still coughing a TON. At least I know her lungs are clear and she got a good suction (even if it took a bit longer than I thought)....It's all in her throat and nose which is a relief.  If we have any additional problems, I'll certainly take her in first thing....but hopefully she can get over this hump to finally kick this cold out of here for good. I certainly do not like seeing her gag, and I hate seeing her so horribly congested!!  Poor thing!

Thursday, December 29, 2011

A First We Could Have Skipped

Meagan has made a lot of progress in the last month especially, hitting some firsts we'd been waiting on for quite a while.  Unfortunately, this week, she has hit another "first" but one we certainly could have done without - her first cold. Ugh. She is miserable!!

Starting to not feel well

It started out like any other cold my other kids have had - a little fussy, runny nose..etc.. and I knew what was coming.  I didn't think anything of it even when she got a fever - very typically, this is how my other girls' colds had progressed as infants.  At this point, I was kind of glad to also see the cold symptoms because I knew the fever was from the cold and not from a shunt infection, so that part of it was a relief... still, though, I hated to see my baby uncomfortable.  I continued to treat her cold like I did with any of my other kids - steam, Vicks, keeping her upright, saline and suctioning..etc..  Her congestion just didn't seem to budge.  Then, later that same night, Meagan started gagging - not the typical coughing gag my other kids had done, but, literally gagging to the point her face and lips turned blue. Very blue.  I, the one who normally can keep my composure, of course completely freaked out.  I went over to her and immediately put her more upright and started to pat her on the back hoping to loosen up the phlegm that was choking her. She finally sucked in a big "Ahhhh" breath and returned to normal coloring. Whew.  It was VERY scary.  She recovered afterwards, and I watched her closely for a while.  She had no other incident, so there didn't seem to be a need to go to the ER. However,  I knew right then we'd be visiting the doctor the next day...

Yesterday came, and we went to see the Pediatrician.  Sure enough, she heard a lot of wheezing in Meagan's chest and a ton of congestion. She decided to give her a breathing treatment to see if it would help break things up and also decided to do an RSV test in the meantime.  Luckily, and much to my relief, her RSV test came up negative.  After her breathing treatment, Dr. Brugner listened to her again and the wheezing had been broken up.  Conveniently, we had a nebulizer machine at home due to my oldest daughter needing quite a few breathing treatments during her infancy... so we got the prescription for the medication and headed home. Dr. Brugner said if it worsened at all or she didn't improve to of course come back - if anything worse developed to take her to Children's. 

Last night Meagan had a few more gagging sessions, and also had one today. She recovered from each one though, so I keep her upright and keep doing all the home remedies we know of to help with that nasty congestion and drainage.  We also started her nebulizer treatments at home, so hopefully they start to work better in the next day or so.  The poor thing is coughing so badly and barely has a voice.  You can hear the 'rattles' in her chest and she is SO congested.

Unfortunately, another "side effect" of the "common cold" for this little baby is the return of seizures.  Due to her up and down fevers and the cold virus, her seizures are acting up again.  We talked to a few other Hydro families and apparently this is common when the kids with seizures are sick.  Hopefully she can kick this cold soon because not only do I want to see her feeling better from this nasty congestion, but I'd like her seizures to go away again too!! We'll keep you posted .... I'm really REALLY hoping these breathing treatments work.  While I'm appreciative for all Children's has done for Meagan, I'd REALLY like to NOT end up there again! Grrr...

Taking her treatments like a real trooper

Resting after her treatment and a bath.  Hope this nasty cold goes away SOON!

Monday, December 26, 2011

Born With a Purpose - Lessons of a Special Christmas

This Christmas season had me thinking a lot about Meagan's birth.  When we think about the Christmas story in modern context, it is quite striking.... a young woman who is suddenly pregnant with the Son of God... engaged to a man who knows nothing of this baby's conception .... living in a very religious and structured culture. ... The thought that crossed my mind was "What if Mary had lived now?" .... I'm sure, being only a young teen as she probably was, she would have been offered to option to abort the pregnancy.  Given her circumstances, it would have been described to her as the "right" choice...a baby, especially one not even conceived with her beloved fiance, would only ruin her plans and her life.  And what about the life of suffering her baby was to lead? It would be selfish of Mary to bring that baby to term, knowing He was going to endure great suffering and even death.  These may seem like crazy conclusions, but, this is often what we hear today about "troubled" pregnancies.  Kill the child in the womb, to save the child a life full of suffering....a life with no quality...to make it easier on the mother.

Thank goodness for us all, Mary was not living in the age of Planned Parenthood or abortion on demand.  Thank goodness for us all, Mary had faith in God that her baby was with her for a reason.  Thank goodness for us all, Mary put aside her own fears and worries for her Son, so that we may all come to know God. 

In the homily at Christmas Mass, our Priest said something that grabbed my attention:  Mary's Son was born to die.  Born to die.  Wow.  What a phrase to hear...but it was the truth.  What a brave mother Mary had to have been....knowing she would bear a Son, the love of her life, only to have him die.  This scenerio is very relatable for those of us who have been pregnant with children considered to have a "low quality" of life, or children whom we were told would die.  What a tough thing to hear from doctors.  What a tough burden to carry.  And yet are we told to have faith, and press forward as bravely as Mary did? No.  More often than not, women are offered the chance to terminate the pregnancy.  More often than not, women are told it's "better" for the child....the child shouldn't be born to a life of suffering or death.  And sadly, more often than not, women give in to this lie.

We were offered this option with Meagan. At 20 weeks, 23 weeks, even up to 28 weeks pregnant.  We were asked on several occasions if we were "continuing the pregnancy."  Gosh, that sounds so much nicer than asking if we were going to "kill our baby," doesn't it? The wording is very carefully thought out, and so are the reasons.  Every possible reason to terminate was mentioned to us: from Meagan's needs being too hard on us, to her care taking attention away from our four healthy children, to her life being full of unnecessary suffering.  I have to admit...the reasons they gave for termination weighed heavily on us - not to terminate, but, about how our lives would change.. how our children's lives would change.  But never were these worries reason enough for us to consider killing our unborn child.

The more and more I think about our journey with Meagan, I realize we even had it easier than Mary. Our daughter wasn't born to die a horrible public murderous death. She may have needs that challenge us... or may have to endure suffering we'd prefer her not to experience, but she was born to live.  She was born to live the life God meant for her ... not the life my husband and I may have envisioned for our children.  Often, even our healthy children choose paths in life we may not have envisioned for them - Meagan is no different.  We just know about her different path ahead of time.

Diving deeper into what Mary must have been feeling, I think at some point, she had to understand what was going on, even if she didn't realize it.  She had to know that even though she would have a Son, only to watch him suffer and die, she  knew there was some greater purpose for all that pain.  Her Son may have been born to die - but He was born to die so that we could live.  Perhaps that is God's intention in giving certain families special children like Meagan.  Perhaps He is reminding us through her birth into a life of suffering, we will truly live.  Meagan is so close to God - maybe her being with us is reminding us we need to be closer to God too.

On Christmas Day, I have a small "tradition" that I have been doing for years now... I go to a local nursing home and play Christmas music for the residents.  I used to go with my mom when I was in high school, and some years since then have continued this tradition either on my own, or with my mom when she is visiting during the holidays.  The residents gathered around - some 'younger' and some very old.  Some of sound mind, some not.  Some with family, some who were forgotten.  We played and sang a lovely array of Christmas carols, hymns, and popular music.  As I looked around, I realized that I was staring in the face at something familiar.  Many of these residents were like Meagan - they suffered, whether mentally, physically, or emotionally.  They had good days and bad days.  They probably felt forgotten by the majority of society, and in fact, most people probably felt sorry for them.  The one older lady who had family visiting at the time of our concert found out she wasn't going home for Christmas that day as planned.  I overheard the mom say as they came in "Sorry Grandma, but we won't be bringing you over to the house today."  How awful, I thought.. I'd be so sad!  How lonely some of these people must get - especially when plans they knew about fell through.  Yet here they were - full of life...sometimes listening intently...  sometimes singing in wonderfully awful out of tune notes...and sometimes talking over the music.  But all I heard was wonderful harmony.  Like Meagan, they pushed through, and no matter what, they were going to have a wonderful Christmas.

I realized last night, that I had experienced the complete circle of life moreso than at any other time in my life.  There I was, with a baby who wasn't supposed to be born.... among our oldest generation of people, who weren't supposed to live.  But Meagan and those nursing home residents prove us wrong everyday.   Just like Mary experienced with her Son - everyone, every person, is born with a purpose.  That purpose may be joyous, or it may be sad, but it is a life that is valuable and should be respected.  It is honorable to want to take away suffering from our fellow humans, especially our children....but our honor is ruined the moment we advocate ending a life to do so.  And how do we measure suffering anyway? How do we say someone is only worthy of life if they do not suffer?  How do we know the true good value of life, if we do not have suffering for comparison? We should all be gone then - because whether silly or serious, short term or long term, if you want the truth of the matter... we ALL suffer.  Sure, it may be on different levels, but suffering is suffering, is it not? How can we then choose for children to be born because they may suffer? Even our healthy children will suffer at some point in their lives..... yet we never thought a moment about terminating their lives. Why was Meagan's life in more danger in the womb simply because I was given the gift of knowing about her suffering ahead of time?  Was my suffering of seeing Meagan's hardships as she grows more important than her life? Was Mary's suffering more important than Jesus' life?  I think not. 

We should all reflect this year on what a true miracle Christmas is.  It is not only the celebration of our Lord's birthday, but also the reminder that he was born to die.  For us. How amazing that Mary, who probably like any other mother wanted to see her Son grow and thrive into old age, still stood by her faith, and accepted her role with open arms... her role to be a mother to a child she would have to watch suffer.  Why is our soceity not more like Mary? Instead of offering the option to terminate pregnancies with special children, we should be opening our arms to these children.  When you think about it, we are truly all born to suffer and die. That is life.  By judging the value of these special childrens' lives as a reason point to kill them before they are born, we are possibly terminating a life that could have made a great difference in our world.

As I sat by the tree with Meagan last night, on Christmas night, I was enjoying her cooing and looking at me. She seemed to be having a great day so far.  Then, the cooing stopped.  She stared off into space, her eyes flickered back and forth, and her head jolted to the side.  Sure enough, she had 2 very strong seizures over the next several minutes.  I was saddened by this because she was in obvious discomfort...and she had been doing so well.  But then I happened to look up..and on our fireplace I spotted our Nativity scene.  And then I remembered I shouldn't feel sad for Meagan's suffering, but just be by her side, as Mary was with her Son. I needed to be thankful that God had given us a living, breathing miracle in our lives.  I needed to dwell on the great things she'd done that day - the cooing ...the smile she'd given me (the first one since her first smile the week before) and her working hard on tummy time.  I needed to be thankful He trusted us with such a special child whose purpose would unfold in years to come.  And I needed to be thankful for this Christmas - where 5 words in a Christmas homily spoke to me so clearly. 

I looked around at my loving husband who had worked all day on Christmas dinner.... my four healthy girls who dote on Meagan constantly... my parents who help us in more ways than they know ... and my grandma who made the trip all the way from Texas to see this baby....and then I looked down at Meagan, my little miracle.   I curled up next to her on the chair, I held her body tightly, and with more meaning than ever, I whispered to my baby..... "Merry Christmas my angel."  And merry it certainly was.

So blessed

Full circle: Meagan snuggling her Great Grammy

Christmas magic

All decked out for Christmas Mass...right down to her cloth diaper with a Gingerbread cookie pattern 

Best Christmas present of all: Another smile!

Friday, December 23, 2011

Get a Grip

It's funny how much I used to say this to myself through this whole process with Meagan.  After we got our diagnosis, on days where the information would seem overwhelming, I would say "Get a grip Molly!" ... When I was headed into my c-section and I was freaking out, in my head I was thinking "Get a grip" .... On the drives day after day to the NICU only to have to leave Meagan again at night, and I would feel like crying I'd say to myself "Get a grip."

It was always something I said to myself to hold me back, in a way, during rough times.  Restrain emotion. Keep it together. Just "push through" that moment, and get to the next point in the journey.

Meagan has always loved to grip my thumb or my finger.  In the NICU after her surgery when she was on the ventilator, we couldn't hold her... so I would stand over her bed and put my hand on her chest.  I'd take her hand and wrap it around my finger or thumb so she knew I was there.  She eventually started to react to me and grip my finger tightly.  When we came home from the NICU finally, her favorite way to lay on me was sideways so my arm could be around her and she could grip my finger.  Now, when she lays on her stomach, she grips my finger with one hand, while holding on to my shirt with the other.

Something so simple - a small gesture many of us take for granted - is such a huge thing for Meagan and me.  It was her first reaction after her surgery letting me know she knew Mommy was there.  It was her first way of communicating with me, and the first of many things I enjoyed with her. 

I think in a bigger picture, Meagan reminds me to grasp on to life.  She, quite literally, has had to grasp onto her life from the very beginning... even before she was born.  Sometimes when she holds my hand I feel like she's reminding me to grasp onto my life as well.  We can go through life, and enjoy it, but sometimes we forget to grab it by the horns and really make the most of it.  If we forget this too often, it will fly by.  Not just pass by, but, fly by.  I need to "get a grip" on my life and make sure I'm enjoying every moment.

This week, Meagan has had some seizure clusters flare up again.  I was very disheartened to see this because of course, it makes her uncomfortable, and I thought we had just tackled this issue with the medication.  She also started to sleep a lot more in between seizure episodes or eating, so she wouldn't be as alert.  She wouldn't work as much on tummy time, head control, and all the other things we are trying to help her do to catch up. I was so sad for her because just last week we had that gorgeous smile and her long cooing conversation with me.  I was so happy she seemed to be progessing well.. and then it just stopped earlier this week.

Last night, I was holding Meagan.  She's been so floppy lately when she's sleeping.  I could literally pick up her arms or hands and if I let go, they would just fall.  Last night, though, I took her hand and put my hand in it.. then I felt her little fingers grip around my thumb.  She gripped tightly, and did not let go.  And she just slept. Just like that. Gripping my fingers. Sound asleep on my chest.

And then that phrase crept up again... "Get a grip Molly!" ... she is having an 'off' week... it's to be expected. Why was I getting so worried over just a few days. Perhaps it was a lot of work smiling and cooing.. and then with the seizures acting up, she might need her rest.  So when she's having a week like this, I need to make sure to enjoy the little things - get a grip to gut through the tough moments, but make sure to grasp on to those good moments.. the special times just between Meagan and me.  And her holding my fingers last night was one of those moments.

So now when I look back on how I used to view the phrase, I feel like it has transformed.  What used to be something I'd say to myself to hold back, is now an active gesture between my baby and me representing moving forward. it's representing us holding on to each other.  It is symbolic of how we are dependent on one another in so many ways.  For Meagan, it's a way she says "It's ok mom... it's just a rough week." ... or "please hold my hand, I'm uncomfortable..." .... or .. "don't leave me Mommy.. I'm scared"....  

When Meagan grips my fingers, she seems like she is holding on for dear life ... and that is how I'm going to hold her in return.  Close to me. Tightly. Never letting go.  Her little hand wrapped around my finger is the exact visual image of how completely wrapped around her I am.  Ironically, she is MY rock... she is the center that lets me 'get a grip' on my life. With so many variables, one thing is constant... when she reaches for me, I'll be right there for her to grasp.  She can wrap that tiny hand around my fingers... and I will let her hold on for as long as she needs. And I know she'll do the same for me.

Thursday, December 15, 2011

Sit Down, Stay a While

I'm not really going to say it because I'm afraid I will jinx everything...but I will quietly "not" say that this "may" be the second positive post in a row about Meagan! 

Today, as I was leaving to get to Meagan's music therapy class, I stopped to get myself some coffee.  The lady in front of me ordered a Large Vanilla Latte...with half the flavor.. but an extra shot of espresso... but steamed only to 'warm' .... but with fat free milk .... but with whipped cream... and it went on.  Meanwhile I'm standing there waiting to just order a Large Coffee.. which requires a lever being pulled down and coffee being allowed to fall into my cup.  But I have the person in front of me creating the designer drink from hell .. so of course, it takes several minutes. 

I finally got out of there, and got in the car to continue to therapy with Megs.  Right as I'm getting on the highway, there is a guy driving about 20mph down the ramp - you know, the thing we are supposed to use to accelerate on to the highway.  The 3 cars behind him were able to pass, but just as the ramp closed down to a single lane, yep, you guessed it... yours truly was stuck behind this guy.  Trying to merge onto a highway with people going 70mph whiel we were going 20mph. 

Later today, I was in a hurry to get to my oldest daughter's school to pick her up.  There was construction on the main road to the school.  I knew a shortcut, so at the next opportunity, I turned around and made my way back to the neighborhood roads I could use.  As soon as I turned on to the two lane neighborhood road, a big yellow school bus pulled out in front of me. And stopped. At EVERY block for the entire road.  "Seriously??" I found myself thinking....

Today, there was just no way I could 'hurry' anywhere.

All these little "pauses" in my day made me start to think about Meagan.  We have had so many pauses as far as negatives and setbacks... shunt settings not working, seizures, pain, discomfort, etc.. But now, for almost this whole week, we've been in a GOOD place with her.  She's had no seizures... shunt is working fine and seems to be on a good setting... she doesn't seem to be uncomfortable, and doesn't seem to be in pain. I got to thinking about what I've been saying to myself all day long.. "Hurry up!!" ... and I realized maybe the words I should be saying are "Slow down!"

Perhaps God was throwing all these 'obstacles' in my path today to remind me to slow down!  Megs is having a relief week.  We are actually seeing her grow, enjoying her personality emerging, and seeing a lot of progress.. .moreso than she's ever had since she was born.  And all I could say today was "hurry up."  Shame on me! I should be enjoying these pauses ... this nice plateau we have of Meagan being in a good place.  This is the time I should want to push "Pause" on our life and relish in the fact that this week, she is basically functioning as a 'normal' baby.  I know she has bad days,  but I need to celebrate when she has good ones!

Just last night, Brian was holding Meagan.  She was looking at him, like she has this past week. Suddenly, she looked up and went "Ooooo" to Brian.  We looked at each other.  I thought to myself... "I think that was on purpose!!" ... so I talked to her... "Hi Meagan! Hi baby! How are you?"  Meagan's response: "ooohh ahhh" ... She was cooing!!! For the first time, she had purposefully made sound, and was communicating and responding to Brian and me!  I grabbed the video camera and got a video of her doing this.  Once she started, she didn't stop!! It was as if she'd found her voice.. and she was NOT going to let it go!  This was another great moment this week... first her smile, and now her cooing. Two positives in a row?? I almost didn't want to think about it for fear of this good streak ending.  But I do need to slow down and enjoy these little milestones she is finally accomplishing because each one is a miracle in and of itself.  So much for her being a "vegetable" according to some doctors .... my baby was smiling and cooing at me.  She is starting to tell her own story.  And she has quite a lot to say!!


I'm so glad you are feeling so well right now Meagan! Mommy will remember that although we have our negative pauses, we can also have positive ones! When we have good weeks, like this one, I need to put on the brakes... stop and take a look around.. and soak in the miracles God is working through you everyday.  Sometimes, I get so caught up in the relief moments, I forget to actually enjoy them. There is so much emphasis on your bad days, and, rightfully so, but sometimes your great days get overlooked.   I think God put today together perfectly for me.  He put that lady in line at the coffee shop, the slow driving in front of me, and the school bus on the same road because He needed to remind me to pause.  Meagan, He has given you this great week... and He needed to tell me "Sit down....stay a while."  And He's right.

Meagan watching her sisters be silly and dance

Meagan snuggling Daddy

Meagan sleeping comfortably.  She has slept 5+ hours a night for the last 4 nights!

Meagan taking in the sights of her first Christmas

Sunday, December 11, 2011

Darkness Into Light

Today at Mass, I was listening to the Homily.  The Deacon talked about change and about being grateful for what we have. He used many anecdotal stories and passages from Scripture to relate all of this to perspective in our life, and how to have the correct view of our world. He also talked about how this attitude can bring us from "darkness into light."  These were the words that stood out to me the most...because I truly feel like that is how this weekend has been for Meagan.

Meagan's entry into our family,her Hydrocephalus and all that has come with it so far, certainly has given our lives perspective.  She has forever altered our perspective of the world, how we view our children, and how we view life in general.  This was a given, considering all she has been through, and all she will go through in her life.  However, I think in today's Homily, God reached out to me. I have been so focused on my change in perspective, I have completely overlooked what Meagan's perspective of the world may be. 

What must it be like for her to be growing, gaining weight, getting bigger, but still not able to control much of her body movement? What must it be like for her to try to look at things, but not be able to focus for more than a second? What must it be like for her to be so content, and then to have a horrible seizure wake her from a restful sleep? I feel like Meagan's perspective of her world was probably pretty dark.  Not because I believe she feels this way deep down in her soul....but because during these times, the Hydro and all its 'accessories' were able to rule her life, and therefore, unfairly overtake her perspective.  Trials she has had to overcome and didn't know why ... pain she had to live with and not be able to tell what it is.... strange occurances in her body that she could not control. 

Ever since we changed the dose in her seizure medication, I have seen a little change in her.  After the new dose was in her body for a full two days, I started to see things shift.  We are now on day 3 with NO seizures.... she has slept 5 hours in a row the last two nights, and when she has awakened, she is content, calm, and looking around the room.  She doesn't have awful shaking waking her from her sleep in the last 3 days.  She doesn't have anything jerking her body in an uncomfortable and unnatural manner in the last 3 days.  Meagan's perspective on her world is changing.  She is slowly realizing the wonders of the life around her.

Just yesterday morning, she was sitting in her bouncy seat.  I noticed her bringing her hands to her face.  Her mouth would immediately react to her hands, trying to eat them, suck on them, or drool all over them. I realized...she was trying to put her hands in her mouth! This may seem silly, but, this was an amazing step for Meagan. It showed progress.. it showed her starting to think of how she could soothe herself.  It showed she was thinking about a process of how to get her hands to her face...something important for eating later on... and a huge milestone for her. 

Pulling those hands to her face!

Mmmmm.. fingers!

Content baby sucking on her own fingers... what an accomplishment!

I was so happy she'd found her hands. We had a sign of progression forward after so many weeks of struggles with her seizures.  I was holding Meagan last night, talking to her, and trying to keep her awake for a little bit.  In the past, she has mostly stared at me when I talked to her.  Recently, she had started to look at me when I would speak to her, rather intently, for a few seconds as if saying "Yea mom? What mom? I'm listening!"  But last night, she chose to tell me something else.  I said to her, "Hi Meagan! How's my girl? How's my baby? How are you doing tonight?" And instead of staring at me, this is the reaction I got:

A little, teeny, beautiful smile.  So content.  So happy.  So gorgeous! 
I couldn't believe she just smiled!! I kept talking to her, and this time grabbed my phone to snap a picture... and she did it again! What an amazing moment!


Just in the last 2 days, she is becoming curious about her life.  She is interested when I talk to her.  She is getting the rest she needs.  She is able to communicate with me for the first time in her little life.  That one little, tiny, beautiful smile was a huge conversation for Meagan! She was able to tell me more than she has ever been able to in 3 months.  Her smile in reaction to my questions was her answer.  She is still in the game.  She is still fighting.  As we begin to, dare I say it, successfully manage some of the immediate challenges Meagan faced, she is reaching out and grabbing onto her life.  She is showing me her perspective....not allowing the Hydro, or seizures, or pain,  to falsely represent her anymore.  Meagan has seen some light from her darkness.. and she is running to that light full speed ahead, for that is where her hope lies....

Her smile was also a small message to me about my perspective.  While it's important to embrace her challenges and realize how these things change my life, it is also important for me to take those challenges on. Full force. And always be careful of the perspective I'm giving off to other people, most importantly, Meagan herself.  She can sense if I am stressed or disappointed.. and while it's ok for me to appropriately vent these feelings, I need to always be strong and positive around her.   I need to keep reminding myself to celebrate every little milestone Meagan accomplishes.  If she is, say, still not able to hold herself up by this Spring, but can continue to give me those little smiles, I need to relish those moments.  I need to let her communicate with me the way she does best and let her perspective of the world guide us on this path.   I have to give off a positive attitude....because there are going to be many dark days ahead.  That is just a fact.  So when Meagan's perspective gets clouded once again by one of the many monsters she fights everyday, I need to be right there - shining my light brightly ... so she can grab on to it, and pull herself from that darkness once again.

I have no doubt that I was meant to hear that Homily today... because ultimately, God will guide Meagan best.  Today, He reminded me through the Deacon's words that my perspective is not always the right perspective for her.  Meagan, I will do a better job trying to focus on your view of the world, and hold myself to that same high standard.  What you are going through is a constant battle to move from the darkness into the light, yet you press on.

Megs, this week,  I am so thankful for that sweet, sweet smile.  Because through it, you have shown me your perspective - stay focused on the light.  And the darkness can never win. 



Wednesday, December 7, 2011

Angels Among Us

Being Catholic, we often talk of Saints and Angels.... we learn about our Guardian Angels as young children .... we talk about God and Angels in heaven... and the list goes on.  Angels are just something that is inately part of our lives from a very young age.  This has been an important part of our spiritual growth .. knowing these angels are around us.. helping us in hard times.. protecting us in strife... and helping us each day to do God's will.

But I think I have also witnessed angels here on Earth.  Angels who help Meagan. Everyday angels who are wise beyond their years, mature beyond what they should be, and so loving, it almost makes my heart hurt to watch them. These angels are around us all the time... and sometimes, they are not angelic.  But nonetheless, they are angels.  I am not speaking of an amazing doctor we have met....a top of the line specialist... or a highly educated therapist.  The combined age of these angels is only a mere 17 ... I, of course, am speaking of Meagan's sisters. 

My other daughters should only have to worry about what doll they will play with, where their pretend cars are driving that day, or how fast they can ride their bike down the driveway to give me a heart attack.  They go out of their way, however, to include Meagan in everything.  If they play with dolls, they name the dolls Meagan ... if they are driving cars, they line them up and ask Meagan if she likes all the colors put together.  If they are riding their bikes, they ask me to hold Meagan in a way she can see them - almost like they are more proud if Meagan sees them do something than anyone else in the world.

Meagan's condition leaves her sisters often worrying about things they can't possibly comprehend yet and leaves them in an awkward place of daily wondering about any aspect of closure or firm prognosis.  I am often asked by them "Mom, when will she smile at me?" ... "Mommy, is she going to sit up soon?" ... "Mommy, will she be able to walk next year?"  I can't give them any answer except the one I know is correct "I don't know...."  You would think this leads to more questions, more uncertainty...but what do they say after I've given them a non-answer? "Ok mom."  As if.. that's it. It's fine. And that's that. 

My four older girls rally and surprise me everyday.  It  has occured to me after many of these sequences of questions that it doesn't matter that they don't understand 'exactly' what Hydrocephalus is ... it doesn't matter that they don't understand the medical terminology... it doesn't matter that they don't understand what exactly Meagan may or may not ever do. None of this changes their love for her.  The way they form around her - almost like the old covered wagons going West.  My girls form a protective circle around Meagan that only a choice and special few will be permitted to enter... if they see fit.

Sometimes, I'll be folding laundry, or doing dishes.. and Meagan will be in her bouncy seat next to me.  The girls will be doing homework, coloring, or playing. From my oldest right down to our 2 year old, not one time when they walk by, do they ever fail to take the time to stop and pay attention to their sister.  Whether it's a verbal "Hello" or a "Are you feeling ok today baby?".... or a hand on her stomach or a gentle rub of her head... they are right there, never letting a moment slip by when they can let Meagan know of their presence.  Often times, I will hear my older two talking two the younger ones... "Oh her head looks good today.. it's so much better than when she was born." ...... "No, don't touch her head like that.. Meagan likes it when you rub her head this way...." 

People always tell me Meagan is such an angel.. .. peaceful as an angel... .sweet as an angel.... beautiful as an angel.  While the descriptive words may be completely accurate,  I think people miss the bigger picture.  Meagan may be an angelic presence in our life.. but her sisters are the true angels.  They constantly talk to her, rub her head, rub her belly, rub her feet .... sing kids' songs to her ... get down in her face and say "Can you see me Meagan?"  When Meagan is having seizures, the girls don't run scared or walk away.  They come up to Meagan, hold her hands, tell her "It's ok baby."  There are many times I see the older two girls walk over when Meagan is fussy, gently touch her shunt site, and they turn to me and say "It's ok.. it's still squishy mom." These girls are so very immature at times... but they are simultaneously wise beyond their years.  And fearless.  Absolutely fearless. And they are the ones who will look out for her and protect her when Brian and I are no longer able to do so.

While Meagan has certainly blessed our lives in many ways, she is also a lucky one.  She has four very vibrant, very beautiful, very sweet sisters surrounding her everyday.  She will always have support, she will always have protection, and she will always have advocates.  The girls' daily actions and gestures tenderly remind Brian and myself that when given a gift as special as Meagan, we as the parents in this wonderful family get to witness something almost as amazing:    Angels among us.  4 little sweet, sweet angels.... given to us by God so they could help watch over the sweetest angel of all. 

Sunday, December 4, 2011

Who Am I

When people told me the Hydro diagnosis would be a roller coaster, I prepared myself.  I knew there would be ups and downs... good days and bad days... and possibly good years and bad years.  But I didn't really prep myself for the ups and downs that can occur within a few hours with this diagnosis.  I didn't fully understand how things can change in simply a few hours, or even a few minutes.  Well, we've had one of those days.

Meagan started off great today.  Yesterday, for the first time in weeks, she only had minimal seizure activity for the entire day.  It was such a 'high' ... knowing she was feeling better... she ate well, .... she barely cried ... and when she was awake, her eyes or head weren't twitching to the right side... her arms weren't shakey....her legs weren't tense.  She was just plain awake. It was so great.

Today started out that way.  I thought we were headed for another similar day.  She had one episode around mid-morning time, but, nothing major like before. So I naturally thought we were still headed on a good path of improvement.  Then the afternoon hit.  Meagan had two seizure episodes..including one during Mass.  And ever since we've been home this evening, she's been on her "pre-medication schedule" of seizures.  She's just had a bad night... bad awake times....and overall is miserable.  She's been inconsolable more times tonight than asleep, eating, or awake.  She looks up at me, so helpless, and cries.. and I feel awful.

This whole night has made me feel strange about myself.  I am a very strong person - normally with a great sense of humor... (actually, I normally have humor or sarcasm at timeswhen I SHOULD be more serious) ... I am this joyful, life loving, happy person.  But nights like this can really get me down.  I turn into this serious, worried, and emotional wreck.  While I felt prepared for the ups and downs of Hydro, I didn't prepare myself for the ups and downs of me.

Nights like tonight I almost feel 'guilty' for being so emotional about Meagan.  I think "Where is that humor ... Gotta stay positive .... We have challenges, but, are doing "ok" so how do I have the 'right' to feel this way?" ....

I guess the feeling stems from being a mother in general.  I want the best for my kids ... and even when  my older 4 children got fussy, I would feel awful for them. I would want to take away their discomfort and make them happy again. If all else failed, I knew the next day would be better... the next day would be ok. Even when they were sick, it was always "Just 2 days on the antibiotic and they will start to feel ok..."

 But with Meagan it's different.  Everything is different.  When she gets upset... or when she has a bad seizure episode ... or when she seems like she's in pain, if I fail to comfort her, I can't conclude the next day will be ok.  Because it might not be.  She may still have the same discomfort the next day.  She may still have seizures the next day.  She may still just have so much going on, that there is nothing I can do to take it all away. 

I realize this post is completely selfish in nature.  I am so blessed.  I have so many supportive people around us ... I have beautiful kids.. I have a great husband.....  But, I also have realized that everyone has their own battles in some way. It doesn't do any good to "rate" our hardships because in each of our situations, a hardship is a hardship.  I know for a fact there are people having a better night than Megs.. and I also know for a fact there are people having a worse night than her.   And the latter is where a lot of my guilt comes from for feeling like I do tonight.  It's what builds a wall around my feelings when we do have a bad time because I know there are always those who are having a worse time.  Who am I to complain when there are worse things in the world?

But I have to continue to teach myself that when it's a bad night, it's ok to say so.  It's a bad night. For Meagan, this is a bad night.  Every parent struggling with a hardship with his/her child HAS to have an outlet.  Whether the struggle is social, academic, physical, medical... temporary or life long ... parents have to let themselves air out frustrations so they can be better parents.  I know I do.  That's the only way I can get up the next day and be Meagan's mommy.  I can't guarantee how her day will go - but , I CAN guarantee how mine will go.  She's the baby. She's the one suffering.  I am the adult.  I have to pull it all together somehow to make sure I am the strong one for her. 

Sometimes, pulling it together is hard for me.  Because I end up in this very strange place.. like being between two people at once.  I'm stuck between humor and serious... worry and confidence .... guilt and need of support.  It's a very odd existence because I find myself, on days like today, asking, "Who am I?"  I've realized that Meagan's Hydrocephalus has not only shaped her life... but also changed mine.  It has changed who I am to the core ... because in any other circumstance, I wouldn't find myself feeling like two people at once. 

The irony of this feeling, to me, is remembering that Meagan happens to have been born on the Feast Day of Saint Padre Pio.  One of the mysteries surrounding the Saint was his ability to bilocate.  The meaning of this Feast Day has come full circle with how I feel on Meagan's bad days. ... except I feel like two people at once. Maybe Meagan's birth date was a small gift from God - a little forewarning through Padre Pio's Feast Day that this journey would 'split' my personality at times.  That on bad days, I would want to be my normal, happy, almost silly self, with unending sarcasm and humor ... but that deep down I would simultaneously feel serious, helpless and sad. 

I will close my rambling selfish post with a small story from today. 

We have a window near the front of our home.  I started to hear knocking on this window a few days ago... sort of like a tapping sound.  I would look, and see nothing.  I thought, ok, it's just the trees or bushes.  Today, the same thing happened... and when I looked outside, there was a cardinal.  A bright, red, beautiful cardinal bird incessantly tapping at our window with its beak.  When that failed, he would fly away about 2 feet, and try to fly into our window - determined to get in somehow.  This continued throughout the day.  Because of this, I decided to read about cardinal birds - why was this bird constantly tapping at my window? what was so special about them? What I read hit me like a ton of bricks.  Every site I found stated that the red cardinal bird is a symbol of faith... a reminder to keep the faith through circumstances that may look bleak, dark and hopeless.  It is symbolic of Christ's blood to remind us all of his sacrifice for us.
Thank you, Lord.  Thank you for that little sign I needed on a day like today.  Thank you for telling me to "keep the faith" ... for letting me know it's ok to feel like two people at once.... because the only way I can "keep the faith" are by going through days like today with Meagan.  I have to hit the low, so I can get back up again and be that positive force in her life.  I have to sift through the worry to grab on to the confidence.  I have to be serious to again find my humor.  
So...Who Am I? A faithful mother to a special daughter.  And that is a definition that won't change. 
What Meagan looks like after an episode when she passes out asleep. This has been her night pretty much.  Keep the faith Megs. It's just one night.  Tomorrow can be better.

A small look at what happens when Meagan has a seizure episode.  This one is about 3 minutes.  She's had several that have been 8 and 9 minutes long. :(