Dear Me

I have often thought about this post. It has one I have wanted to write for some time now, but I think it just happens when it does because God always knows the perfect timing. I would think about what to write, and then forget about it as other updates or news would trump my train of thought. And it's honestly a post I have not revisited in a while. Since coming across this draft,  I have thought long and hard about the purpose of our blog. I have thought about the struggle in changing it to invite-only or keeping it opened up for the public to read. And that's when I remembered why I started this in the first place.   Other Hydro blogs are what saved my life when I was pregnant with Meagan. They are what I have used to guide me, better Meagan's care, relate to on the bad days, and read over and over again always gaining new perspective and appreciation for our journey. And then I thought of the people I have heard from over the last two years that were touched by Meagan and chose life for their child.   I wanted to not only share our story to "pay it foward" but also as a testimony to life.  To God's plan.  To miracles. And so here she is, for all to read about.

That said, I have finally completed a letter to myself below that I started some time ago in my head. Something I wish I could have read in the beginning, and something I hope will help future hydro parents when they first hear those frightening words and the doom and gloom that seems to cloud any hope they may have.

 

Meggy getting some smooches from her Aunt Katie



December, 2013

Dear Me,

I know it is frightening. I know it is not what you expected. I know there are so many more questions than answers. But I want you to listen to me for just a minute. Just take a moment to feel calm, and open your heart. The child you are carrying is there for a reason. It isn't by chance that at the moment of conception, you became that child's mother. The child was chosen for you, yes. But you were also chosen for that child. Out of all the possible mothers in the world, God knew you could care for this child.
I know it seems so unfair right now. There are so many questions you have. Will the child be born alive? Will the child survive modern medicine to be able to go home? Once the child is home, will she smile? Will she see? Will she hear? Will she be able to reach, grab, touch, or feel? What kind of pain will she be in? How many surgeries will she need? What other complications will she have? What kind of life will she live? How long of a life will she live? Will she learn? Will she grow? Will she be happy? Will she know love?
I want you to know that there will be hard times. There will be times of uncertainty. There will be times you have to see your child endure pain. There will be times your mind feels crazy with questions, anger, frustration and sadness all at the same time. There are times when no matter how much love you feel looking at that child, you will just want to give up. There will be times that you don't do everything you are supposed to do - miss a medication, not work with your child, just need to take a break to lay down and regroup. There will be times you really feel it is all just too much. When you ask why. Why me? And feel like your life is over. Feel like it is all just too overwhelming and you cannot possibly go on in your situation.

I want you to know that all of that.... is ok.

It is ok because the good things will far surpass any of those feelings or bad days that you have. When you are down or overwhlemed, feel it! But know that there is always good to come out of it. You will jump for joy at every tiny milestone your child makes. A smirk, drinking more than a half ounce out of a bottle, moving fingers and toes, or the twinkle in your child's eyes....and all the little quirkisms you will come to know as your child will just set you on fire with happiness. You will be priveleged to learn about the world through a very different set of eyes. You will learn to be generous and loving, even moreso than you are now.  And you will also learn when to be hardened and strong.  You will learn that being "Mama Bear" is not a bad thing, and your ability to teach and show others through actions will eduacate others on how to be better people, more inclusive people, and ultimately advocates for the people like your child. You will learn what true friendship really is, and just how loving and supportive a family can be. Your child will be loved. Happy. Your child.  Most of all, they will be made in God's image.  Unique, special, and a little touch of heaven on earth.

So hang in there.  Remember a day is just a day.  God always gives us hope - and the sun always rises the next morning.   Teach these things to yourself and your child....the bad is there to produce more good. The tough times always produce progress.  And God is always there through it all.

- Me


2013 has been good to us in so many ways, and also had its challenging times. 7 hospital stays, 4 surgeries, therapies and setbacks.  But we have also seen miracles - seizures controlled, becoming a sitter, and an absolutely explosive personality that strikes through even the toughest of souls.  Here's to a wonderful 2014... many blessings, many happy moments, and the ability to take anything else in stride and realize the miracle in it all.

God Bless everyone and Happy New Year!



The Rock

To make it work in our family, I do a lot.  Pretty much everything at home...the running around...the balancing stress of medical bills.....the daily routines of baths, clothes, feedings, education, consoling, disciplining, and loving.  But there is one big reason I am able to do all that - my husband.

Brian and I met at Xavier University where we were both attending college.  We lived on the same floor of the dorm and became friends with the same people. I first noticed him because he was a nice looking guy and always really funny.  He always seemed to have fun and truly care about people, and he was one of the few guys I knew who I would see at Mass every week - which was a very attractive quality.  After a few years of being friends and hinting around at going on a date, we finally did in February of 2000.... and the rest is history.

The two of us on Graduation Day

Brian is the best dad ever.  I know that sounds very cliche, but, it's the truth.  He has a very tough and stressful work environment - yet he still manages to balance it when we need him most.  He never loses sight of what is important, and he is always there for our girls.

If I am at my wits end and need a break, he's the first one to offer to stay with the girls so I can have a little "girl time" with my good friends... if I am dealing with a tough situation he is the first one to stand with me and help me through it.... if we are struggling as a family, his quick wit and sense of humor make all our troubles seem like distant nothings.

Brian is very talented at focusing on each girls' particular need, and making them feel like he is right there at all times.  He helps Reilly get pumped up for dance and basketball... he wrestles with Kaitlin to help harness her bounding energy....he snuggles with Anna to temper her super sensitive emotions....he talks to Maura to help open up her little preschool world....and he engages with Meagan to help her continue to grow, flourish and feel loved.

Always willing to be silly for his girls

Today is Brian's birthday.  I felt compelled to write this because our whole family "is" because of who Brian is.  He is our advocate, our friend, and our rock.  Brian, your intelligence, quick sense of humor, and love for all make it a true blessing to have you in our lives.  God sure knew what he was doing when he saw what was ahead and chose you to stand by me through it all.  Happy Birthday - and don't ever change. Love you!!

Just Say Yes - Merry Christmas 2013

Merry Christmas to all our family and friends! This Christmas has been quite fun watching Meagan explore her new surroundings, the lights, the paper, etc. With her recent sitting, it is allowing her to play with a whole new perspective.  This year, although she has had her share of surprises, surgeries and challenges, she has barreled through them with no hesitation.  Seizures have also stayed away for the most part - which has been a huge blessing as we have seen her blossom and progress without the epilepsy showing their rude interruptions.  We pray her meds continue to work as well as they have been and we have a similar seizure-free few months ahead of us as well. I am excited to see what next year holds for Meagan.

It's surreal to think back to our talk with the specialist who after officially diagnosing Meagan asked if we wanted to continue the pregnancy.  For us personally, that question was already answered when we became pregnant - we said yes from the first pregnancy test and no hurdle or condition could change that.  But considering the time of year it did make me think of Mary and what she must have felt.  Young, alone, and pregnant, and in a much different and less tolerant time than we live now - she still said yes.  She was also accepting the unknown - a completely uncertain future but trusted for whatever reason that it was supposed to be.  What courage and faith that took to not only say yes to God and the pregnancy, but to say yes to all the unknowns that come with it.  In that sense, I find comfort in asking for intercessions from Mary -  especially when times are challenging.  Hydro is essentially the unknown as well.  There is no timeline, no certain outcome, and no shortage of multiple other diagnoses and setbacks that can appear as the child grows. Yet I would not change my answer of yes. Not for a million dollars. Not a billion. Not any one thing in the world could ever make me want to rewind time and not have Meagan in our life.

Sometimes saying yes to a tough situation is a bit short sighted - we know it is the right decision at that moment, but we do not see the long term challenges that lie ahead by doing what is right.  Likewise, we also don't see the long term rewards that will come into play from those challenges to keep that faith alive... and so we must focus on those to keep moving forward and realize the true blessing of this life.  This Christmas, it is a perfect time to reflect on that concept.  That saying yes to the right decision not only means making the right choice at that particular time, but also saying yes to the good bad and ugly that comes along with that right decision as time goes on.

Today among our gifts and festivities and celebrations, let's make sure to take a moment and remember how one little word changed humanity.  One simple leap of faith... one extension of trust to accept whatever came her way....one small, yet immensely loaded word - 'yes'.... and the Savior came to save us all.

This Christmas, I relish in all the new-found strength we have found as a family pushing through the challenging times, and all the good that has come from that since saying yes to Meagan... all the rewards, the blessings and the miracles we have witnessed along the way that make the hard times seem like just a blink of an eye.  I hope many more people continue to accept making those difficult yet right decisions - remember, just say yes, and you  never know how it may change the world.

"Today as we gaze upon the newborn Savior, we can indeed rest knowing that God is there to calm our worries, ease our fears, and alleviate our anxieties.  

He has given us the greatest gift this Christmas .... the gift of life and salvation."  

- Michelle Fritz, Catholic mom and blogger

Merry Christmas to all!

 

If At First You Don't Succeed..... We Have a Sitter!! :)

Brian had been away on business for a while... I had many days in a row of 4:45am wake ups so I could make sure and get everything in order for the day - 4 lunches made, 4 bags ready, homework signed..etc.  Not to mention the regular everyday stuff I had to accomplish along with teaching my music students..etc.  I ... was.... tired.  This was hard work and I was just ready for everything to stop.. just for a second.. so I could rest.

One day last week, as I mentioned before, Meagan just sat up. Out of nowhere... 2 1/2 years old and she pushed herself past that halfway point she always got stuck in and succeeded in getting into a sitting position.  She has tried this again and again since that day.  Yesterday I noticed Meagan practicing this as I was folding some laundry - the up, the down, the in between, the getting stuck and the falling to the side.......  When she was finally finished she was visibly out of breath and literally passed out asleep.  I thought about my tiring two weeks and realized.... ya know... my two weeks of 3 hours of sleep weren't that bad. 

Here she was just trying to do what all of us don't even think about and take for granted. This was truly hard work.  This was truly tiring. Every time she fell she didn't stop. She didn't take it as a defeat. She kept on going.

The whole time she kept a smile of determination on her face. I hope the next time I'm run down and tired and just feel like giving up I remember last night. Her up and down, up and down, and the way she persevered even after failing multiple times. After all, obstacles are not stop signs...only guidelines for greater effort. 

How It Should Be

Yesterday my eldest daughter Reilly had a small skit at school about the story of Our Lady of Guadalupe.  If you are not familiar with this story, you can go read it here.  It is incredibly inspiring and the perfect lesson about belief and faith for this season.

Reilly had expressed some concerns earlier in the week that I would not be able to attend because the incident the prior week had really rattled her, unbeknownst to me.  Although I promised over and over to be there, she started to question whether I could stick to that promise, or if I would have to leave because of Meagan.  This made me sad because these are not things she should worry about, nor has in the past - and certainly I did not want her to start doubting my word because of her baby sister. They are so wonderful with her, I didn't want them to start feeling resentment.  No matter how many times I reassured her, she still had that hesitation as to whether I would actually make it in there with Meagan's stroller.

Before the play, Meagan had PT yesterday at the house so I made sure to be ready to leave as soon as it was over so we weren't late.  The PT informed me that she was able to get Meagan a seating appointment (to be fitted for her wheelchair) the first week in January! This is awesome because it was going to have to be February or March, but she was able to pull some strings and get it moved up.  Leaving the house on a high from the news, we set off to the school.

We arrived at the big school and I wheeled Meagan up to the lobby. Other parents were waiting and chatting before going in.  As we walked in, I pushed the button on the elevator. The light went on, but no open doors. I tried again, and nothing. "Seriously?" I thought.  How would I get Meagan upstairs to make it to Reilly's play? Then a few parents noticed me standing by the elevator and it not working and without hesitation grabbed the bottom of Meagan's stroller and helped me lift her up the two story staircase so I could make it upstairs.

The play was held in a rather small room and by the time we made it up there carrying the stroller it was already a packed house.  There was really nowhere for Meagan to "fit." I became concerned I would have to stand outside the door and Reilly wouldn't see me, thinking I hadn't come.  But again, parents parted the way up one of the aisles and made a space for Meagan with an open chair next to her for me.  As I sat down, I could see behind the divider where the kids were waiting to start the play.  Two big brown eyes looked out and I could see them perusing the crowd, frantically switching side to side as they scanned the room.  I knew she was looking for me.  I sat up tall so she could see me and then her eyes met mine - and I could literally see her face relax from where I was sitting... and then sport a HUGE smile.  I had made it, and she knew it. And now all was ok.

The play was very cute and the kids did a wonderful job.  Reilly came over afterwards and gave me a big hug - she told me "I was so worried but when I saw you I was so glad you got to come in!"  She skipped off with her friends to change and head back to class and I started the process of getting Meagan downstairs. Once again, parents stepped forward and helped move chairs to wheel Meagan out of the room, and then again helped me bump her down the stairs.  The amazing things kept happening yesterday... almost in a chain reaction and I saw God at work.

It may seem small and unimportant, but we miss a lot of events due to Meagan's limitations and/or emergencies....so when I promise my children I can be somewhere to see them, it is even more important that I get there to make sure they know their activities/school events/hobbies matter to us.  They are wonderful older sisters - but they give up a lot.  So these little events mean the world to them. And they are also important to Meagan.  I want her to experience as much of what the older girls did as possible and see her sisters as much as possible in a regular environment doing everyday kid things.  It teaches her necessary lessons about life and supporting her sisters....and I never know quite what is going on in that little head of hers, but I know she has to be soaking up so much of these experiences....and that is so valuable to her, and her development.

I went to bed last night thinking about what a wonderfully different day yesterday was compared to last Thursday when trying to attend Maura's Christmas party.  I thought about the wonderful people in our community, the parents and students and how no matter what, we always rally around each other in tough times.  How people rallied behind us emotionally last week... and how they showed this in action this week at Reilly's play.  And that's how it should be.  Especially in our faith community - our home - our safe place.

Today is "break day" as we call it - last day of school before our big Christmas break. And we are so excited! As we move forward with our family get-togethers, our times out with friends, our running to different stores to try and sneak in a gift here or there without the kids knowing, and our times at our churches, let us try to not forget to look out for each other.  You just never know what little eyes are looking up to us and watching - and what lessons they are taking away from it all.  God always has our backs, so let's have each others in the spirit of Christmas.  At times, even if others fail to practice this, let us be the examples.  Let us reach out in awkward situations to show support, to show love, and to show understanding - let us show others.... how it should be.

Reilly as her role of "Mary" in the skit - and Meagan taking in every second.

Hope

Hope is such an overused word.  We hear it constantly in big contexts, small quotes, and even thrown around without much meaning.  But I think we need to take the word back.  It is such a powerful word that encompasses such a powerful notion - that yearning and seeking for better - the faith that things will in fact improve - that anticipation that something great will happen even if it seems impossible.

We had an unfortunate incident occur last week regarding handicap access for Meagan.  It is not resolved as of yet, so I am foregoing details for now - but I can tell you that because of the circumstances, it was the first time I really felt hopeless in this journey as Meagan's mom.  I am normally such a "pitbull" when we have faced any sort of adversity with Meagan, but this particular day, it blindsided me so much, and hit me straight in the emotional gut with such force, that for a moment, I felt defeated and couldn't fight back as I normally do. I'm hopeful for a positive resolution, but in the meantime, I was feeling pretty down.

Ironically, as the week has gone on, my mood has lifted.  I have seen some amazing things happen with Meagan that have come out of nowhere. First, a few days ago, she pushed herself to sit up. All on her own! She had never done this before! She was laying there playing as she usually does, and then just pushed up on her arms.  Typically she will stay in this position (we like to think she would be a "boat" champion in Yoga!) and then would collapse back onto the ground.  Not this time.  As she held her position, she moved her arms up a little bit and kept pushing.. and bam - she was sitting straight up. All on her own. Just beaming with pride as she clapped and said "yay!"  Meagan has been trying to sit up every day since then - some days she gets up on her own...others I can tell she is really fatigued and she tries and then just lays down and plays happily on her back.  However her PT said she may change Meagan's status to "independent sitter" on her report if she keeps improving!  This is a huge change for her - I'm so excited to see the new ways she will be able to play and enjoy her toys now. I'm also hopeful this newfound skill will help propel her into the next stage of gaining new motor skills or at least becoming a much stronger sitter.

Another thing that has really changed this week is her sense of humor.  Meagan has always been a little ham, but lately she is really belly laughing about a lot more, so I suppose "change" isn't the right word as much as I have seen it grow immensely.   I have never heard her laugh as hard or purposeful as I have heard her this week.  One day, Reilly was being silly with her sisters, jumping around the room like a frog.  Meagan saw her and thought it was the funniest thing she had ever seen. She let out the biggest belly laugh ever! Then she would squeal with excitement as she anticipated Reilly jumping again, so Reilly continued to jump and Meagan continued to hysterically laugh.  I grabbed my phone and recorded some of it.  The squeals of happiness and the joy Meagan obviously felt made me hopeful this part of her personality will continue to grow.

The other big growth we have seen in the last few days is Meagan's speech.  She has loved copying, trying to imitate and watching us speak for a few months now - but up until this point she had her babbling and noises...but her few words she would repeat were literally copying what I or one of the girls had said (including her favorite, "awesome".. or "aweshum" as she says...).  Over the last few days this has changed.   She is starting to actually say something unprompted. Meagan will now "talk"  random words to the girls - almost as a way to get attention, and totally of her own accord.  It has been amazing to watch this because now I am hopeful she is at the very beginning of being able to tell us something on her own. Maybe this means as this progresses she will actually be able to tell me what hurts, or tell me if she needs something since she is starting to form her own thoughts, or at least starting to be able to articulate them.  The sweetest occurence was yesterday when Meagan looked at me and said "Mommy"....so I went to pick her up.  As she laid her head on me, she patted my back over and over and said "Mommy... Mommy." Chills. There is really no other word to describe it. 

 Despite the incident last week that left me emotionally drained and disheartened, God, once again, has been able to bring me back through our little girl.  Through Meagan's changes this week He has reminded me that although we may have emotionally tough times, although we may come up against walls we did not foresee, there is always hope. And Meagan's sisters remind me of this too.  They had a lot of questions about what happened last week - as they should.  They do not quite understand the same way I do, and it really impacted their view of being Meagan's sisters.  But, just as they have  in the past, they have bounced right back and have proven to be, yet again, the best advocates and teachers for their baby sister.  It also warmed my heart - knowing that times I can't be there, or far in the future, I am positive Meagan will always, always be taken care of.  Her sisters will always be there to guide her through those walls with solid strength and God's grace. You just can't mess with a kid who has four big guardians by her side. :)

     

As we approach the last Sunday of Advent, the season of hope, Meagan reminds us everyday not to lose that anticipation of what she can do next.  That, I think is the best part of hope - it is never-ending.  There is no last chapter, no finality.  It is an ongoing desire of expectation - a trust, if you will, that things will get better...always.  That circumstances will continue to improve. That new adventures are on the horizon, even if not seen quite yet.