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Jesus’ Door

I have always been pro-life, and so when we were faced with an unexpected diagnosis with our 5th daughter at her 19 week scan, there was no question we would bring her in to this world and face her challenges along side of her.  Immediate thoughts included just keeping her alive, getting her through surgeries, and learning as much about what we were going to go through with her as possible from the medical side of things.  Now that she’s 4 years old, although there are (and always still will be) medical emergencies, surgeries and all the things we thought about the last half of her pregnancy when we tried to imagine our life with her, there is a slightly new perspective I’m gaining. 

Meagan is doing well.  Her brain condition she was born with really leaves parents with a “toss up” situation.  Kids have a wide spectrum of outcomes, and often times things that happen along the way as they are growing also impact those outcomes.  Now at 4 years old, she is talking, she is up on a walker moving herself around, she loves to sing and learn and play just like other kids.  But, she is still not a typical 4 year old.  It’s hard enough with typical little ones at Mass, but with her it poses an additional challenge. 

When her four older sisters were toddlers or younger, of course they went through the things we typically go through with those ages.  The squirming, the restlessness, the wanting to move, the tantrums, the frustrations, the noise making…and the list goes on.  We do our best to help them through Mass each week and help them learn, and eventually, we see these challenges subside, one at a time and we see their understanding grow and before we know it, we have our little kids sitting in Mass with us behaving “pretty well” most weeks.  It’s a process (and yes, at times, it is daunting!), but we know it’s a process and we will move on at some point when upon looking back, it seemed like the blink of an eye.

Then, there is the experience of being Meagan’s mom at Mass.  She goes through the same list as above – but – imagine that there is no process for the time being.  There is no seeing things subside over time.  And, even more challenging, there is never a clue as to what will set her off – whether it be into a frustrated tantrum, or whether it’s into joyful, albeit loud, noises that do not cease.  While I understand there can’t be screaming through Mass, it does pose a challenge to me, and other special needs moms.  We can’t tell as easily what they are soaking up, and behaviors may change over many years rather than months, or never change at all.  This is where I started thinking back to our firm decision to bring Meagan into the world despite recommendations to terminate.  That was an easy decision in hindsight.  This…. This stuff… is hard.

One Sunday while at Mass, Meagan was having a little rougher time than normal.  We had a lot of rain come in, and because of her ever changing pressure in her brain, she has a very hard time with weather shifting.  She was just frustrated, upset, and couldn’t get comfortable.  It had been a seizure-filled morning for her and that usually is never a good start to her day. (nor would it be for anyone!).  Finally after realizing there was no reaching her, I took her to the back of the church.  She seemed more content to be on her walker, but, it is very loud.  She loves to move, now that she can move, but she has little steering capability and absolutely no awareness of objects or people in her way.  She would clunk clunk clunk down the back aisle of the church, hitting the pillars, sides of the walls, or people’s feet if I wasn’t fast enough.  She was happier and more content being in Mass that way, but, she was loud.  I kept trying to steer her back down the aisle because she kept trying to go in this narrow passage to a door at the back.  The door had glass and I was trying to keep her away from potential disaster.  I would turn her around, she would freak out and turn back towards the door.  Finally after repeating this process several times, she stiffened her body and yelled “No! I go Jesus door!”  It took me aback as I had no clue what she was talking about.  But she was emphatic enough, I gave in and let her go to the door.  She pulled her walker close to the glass, put her hands on the glass, and looked inside.  She said “It’s Jesus!”  I walked over behind her and couldn’t see anything due to the reflection, but as I looked in, I realized what room it was.  It was where the Blessed Sacrament was always present – Adoration. I looked around the room, and except for a few chairs with the kneelers, there was nothing else but the tabernacle in the room.  I wondered to myself, “how did she know that was Jesus?” 

 

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Often times, our kids pick up a lot more than we think at Mass.  I know I’m shocked by what my older four kids sometimes tell me from just hearing things over and over, but I was even more shocked by Meagan that day.  With all she has been through, we have tried to keep her close to Christ and to her Confirmation saint, Saint Gianna.  We pray the Hail Mary with her nightly, and treat her just as our other kids are treated.  But Mass has been a huge challenge.  It was so nice to see that day, that somehow, and some way, she knew Jesus was in that room.  My older children probably don’t even realize that, yet Meagan knew – she just knew His presence and wanted to be close.

Mass routine with Meagan hasn’t changed much.  She is still clunking her big leg braces between the pews, or slamming her walker in to the wall or pillars, or constantly talking not understanding how to whisper or be quiet, or on bad days arching backwards with head pain I don’t even want to imagine.  But I ask other parents, and other Catholics in general, to be patient.  To the regular eye that glances our way, it may not appear Meagan has “challenges,” and I know how sometimes we are quick to judge, especially during Mass when children are loud. We are so thankful we have such wonderful parishioners who, so far, have been extremely patient and accommodating to her and us, but we know this is not the case everywhere.  So I challenge everyone to take a breath, or even better, say a prayer, for that child that may be too loud, too awkward, too boisterous during Mass – it could be Meagan, or someone like her just trying to find their way. 

My job as her mother is to bring her closer to Christ, and find her way to heaven after this life is over.  So through her clunking and awkward questions and noise, just know that by her being there in Mass, she knows Jesus.  Every week now she asks to go take her walker and stand by Jesus’ door.  And, I let her…..because that’s why we suffer through all the challenges to bring her to Mass – so she can know Jesus. And so far, I think she’s doing a pretty good job at that.  She’s helped me to see that maybe sometimes, I just need to stand in front of Jesus’ door, and enjoy His presence in my life.

 

Enjoy this video below of Meagan reciting part of the Hail Mary….she’s catching on 🙂

Meagan saying Hail Mary

 

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Ordinary Family, Extraordinary Circumstances

We are just an ordinary family.  A dad, a mom, some kids, and the token yellow lab.  We live in a normal house and do normal things.

And yet, in June 2011, the most abnormal thing happened to us that changed our lives forever.

I found out I was pregnant again by the end of January 2011.  Of course I was a nervous wreck until we reached that 12 week mark, because of my miscarriage that previous Fall, but luckily my OB was very supportive and even gave me an ultrasound at 13 weeks so I could see that everything was perfect.  From that point on, we were flying high with the excitement of a new baby and were looking forward to our 20 week scan.  No matter how many times we’d been through it, those ultrasounds were so incredible each and every time.  Little did I know,this 20 week scan would be different than any other I’d had.

When we arrived the morning of the ultrasound, we were very excited.  We had chosen to keep the sex of the baby a surprise again, and were looking forward to seeing all his/her perfect parts and the profile of our newest baby.  The scan went great, but at the end the Tech told us “I’m going to have to send you to a Specialist because the baby has some fluid in the brain and you will need to be monitored. Your baby hassevere Fetal Hydrocephalus.

Enter: Knife in heart.  What? What did this mean?

This news would send us on a whirlwind of emotions, research, and a journey into the unknown.  So much unknown, that we decided to go ahead and find out the sex of the baby… it was another girl. We chose to name her Meagan Theresa.

After having a few days to digest the diagnosis and do hours of research on our own, we had adjusted…well, as much as you can adjustWealways felt open to whatever child was sent into our life, so we just had to pick up our pieces, and keep going.  The diagnosis had a name – but we soon realized the prognosis was completely up in the air.  We had found several helpful websites, and through those, found other Hydrocephalus parents’ blogs.. who then invited us into a private Hydocephalus message board online.

We gained a wealth of information and knowledge. We found out that her brain was being squished by the fluid against the back of her skull… that there was nothing we could do for her while in utero … that she would need brain surgery after birth to insert a shunt (“fake” drain) into the area her body had failed to form correctly.. that she would need this device for life… and that there is NO guarantee or predictor as to how our daughter would be when she was older. Some kids have multiple surgeries because of the failure rate of the shunts… some get lucky and have one.  Some kids are slow to ‘catch up’ but then are ‘normal’ by age 4 as long as the shunt keeps functioning… some kids have severe special needs…from eating, to gross motor skills, to mental issues.

There was literally no way to tell what we would be dealing with until we actually lived through it.

We had to see a Perinatologist due to our daughter’s condition.. One of the first things we were asked upon our first ultrasound with their office was… “And would you like to continue this pregnancy?” It really shocked me.. I was 21 weeks pregnant – were they serious?  And yet, we were asked again by the doctor, “I just have to ask this to do my job…but are you thinking of terminating the pregnancy?

This initial appointment really stung.  The words of the doctor and genetic counselors hung over me like a black cloud. Why would they ask this of parents ONE day into a devastating diagnosis…and how exactly is asking “just doing his job?

Isn’t the Specialist’s job to treat my baby in the womb… not offer to abort her like she’s worth nothing?

Isn’t she his patient?

I’ve always been a pro-life woman.  But now it was personal…and it really got me thinking about the issue.  I couldn’t believe I had been asked to terminate my pregnancy at all…let alone at 21 weeks. And that’s not even the worst. I was asked again at 23 weeks, 25 weeks, and 28 weeks pregnant.  Abortion takes women in my situation, a distressing, devastating diagnosis of a child, and preys upon the woman’s emotions before there is any time for logical and rational digestion of that issue.  Too many lives are lost to abortion due to these ways that the industry ‘attacks’ women.  The apathy surrounding the abortion issue doesn’t help either.  When people say “I would never have an abortion, but it’s not my choice to make for others,” it disregards any human responsibility we have for compassion towards others and valuing our fellow human citizens.

As we continued our journey, I read more and more stories of mothers contemplating termination for a Hydrocephalus diagnosis.  Without trying to sound insensitive, I didn’t understand this logic.  For us, our options to “deal” with a pregnancy (good or bad) ended when we became pregnant. I’m not disregarding the fact that a diagnosis such as our daughter’s was tough… it still is.  It is devastating, sad, and uncertain.  It can (and frankly, should) make us, as her parents, upset, worried and even angry at the world. However, how.. HOWdoes this translate into thinking it is then ok to end her life? What if my oldest daughter, born perfectly normal and healthy, was in a biking accident at 8 years old and had severe brain damage? Would we end her life because it would be “better for her?” How is this any different than Meagan, who happens to have a condition from birth? The answer is, there is no difference.

This is why I hate the term that was thrown around so casually to us … “Termination for Medical Reasons.” That isn’t mercy – it is a nice way of saying “I chose to kill my child  because I did not want to deal with the hardships she may bring to MY life.”

I know it sounds blunt, but, it is the TRUTH.

Why are we teaching our children of this and the next generation to give up on difficult situations?

Or that life with hardship means that life is not worth experiencing?

What kinds of lessons do we give our children and grandchildren?

How will they handle life, then, when it DOES get hard?

How can we expect good children…when from the beginning we tell a mother it is ok to kill her child?

Who are we to decide what quality is when it comes to life?

The job of being a mother, I have learned, is not to make it as easy on us as possible.  It is not to alieviate our child’s suffering by ever crossing those deep moral boundaries of taking an innocent life.  It is simply to LOVE the childPeriod. End of story.  Anything else that comes along with it is just part of being human.  It is part of our humanity to have human suffering. As mothers, this is difficult to see when it is our own children – but – we must understand that it is not ours to take into our own hands.  That is why we must try our hardest to accept what we have been given, and help our children in whatever hand they have been dealt, because, ultimately, we are trying to get our children to heaven.  We cannot accomplish this by hiding behind the “termination for medical reasons” excuse.

WE do not decide if and when our children enter heaven.  We need to accept them, hold them in our arms, and walk the path withthem no matter how hard. This is how we are truly fulfilling motherhood – as Mary did on Jesus’ path of suffering. This is how we truly help our children to reach heaven and live God’s intended promise for their life.

I believe I was chosen for a reason to have a child who will need me so much.  God knows that women like me, who go through such devastation of a bad diagnosis/prognosis, are stronger than the “what ifs” and the negatives.  He has looked upon us and said “YES! You are strong and loving. You can do this, so I will give you this special child.” I think about this everyday and thank God that Meagan was given to us…because with another family, she may not have even made it to her birthday. They may have chosen to “terminate for medical reasons.”  She is here now – with her ups and downs, and worries and scares. And she is not even 3 weeks old. But I wouldn’t have it any other way. There is a woman who was contemplating aborting her Hydrocephalus baby who came across my blog and then decided to keep her baby girl. Meagan is already changing and saving lives…and she doesn’t even know it yet.  We cannot continue to let doctors scare women out of being what they already are with that child in their womb: a mother.

Our whole situation with Meagan made me think of one of my favorite quotes, from one of my favorite people: Mother Teresa. I think she sums up best the attitude we should all strive for, especially in such times of despair:

“Please don’t kill the child. I want the child. Please give me the child. I am willing to accept any child who would be aborted…”

 

**You can follow Molly’s online journal of Meagan’s story at Priceless Little Pearl**