Dear John Paul,
So many times when I have sat down to write you...you were just a few steps away. I would stop my letter to suction you or check your diaper. That is different now. Last Wednesday afternoon, you went to heaven. I know that now, I don't have to tell you what is in my heart. I don't have to explain to you what happened. I know that you know God's plan even better than I do now.
Your wake and funeral were amazing. I know your view of it must have been unparalleled, but even from here...it is hard to express...the numbers of people, many I didn't even get to see or greet, so many family members and friends pouring out their time and skills and love to make the days a perfect expression of gratitude for your life.
The days leading up to your death were intensely prayerful. Priests praying many Masses, Stations of the Cross, writings of saints, rosaries....all of these again and again confirming the gentle urgings of the Holy Spirit that your work on earth was done and that you had much more awaiting you in heaven.
It wasn't how I thought it would be....I always dreaded a caregiver's mistake being the reason you left us. Doctors prepared us for respiratory failure in the course of a secondary illness, a pneumonia or cold or infection. None of these things happened. Ultimately, for you, your disease did progress in an unexpected manner...maybe there was a second diagnoses that doctors could not discover, maybe it was just your version of SMA...we will probably never know. But towards the end of your life, if you could see at all, it was not discernible. We learned in the week prior to your death that a large part of your brain had wasted and was replaced with fluid.
I hesitate to even write those things for fear of being misunderstood....your life even in the very last moments, was beautiful and infinitely valuable. But I do know that the Holy Spirit uses the physical truth in order to help open our hearts to His will, that we may not have otherwise have been open to hearing. I can only compare it to a vocational discernment. In the case of marriage for example, the person seems right, the timing is right in a very material sense, but in order to have the certainty and confidence to move forward, there must also be an inner conviction that this is God's will. We are just cooperating, unable to see how His Providence will play out in its entirety.
I miss you immensely now. Especially as the beautiful events celebrating your life have come to an end and we have to keep moving. The house is quiet....for a kid who couldn't make a sound yourself, you came with a lot of background noise. But more importantly, I need a mission. Yes, I have four other kids to raise and get to heaven. You would think that that would be mission enough...but I had that mission before you were born, and you added such an awesome way of bringing all of us closer to Christ. Don't get me wrong, you still do....but your mom needs help in getting into a new groove. I'm not used to having the added family dynamic of a saint to lean on.
I know you will help me gradually discover God's plan for the family you couldn't take with you.
I love you more today,
Mom
Monday, February 25, 2013
Thursday, February 7, 2013
Dear John Paul,
Yesterday, you turned 14 months old and exactly one week from today marks one year from the first time we brought you home. The first time home only lasted 12 hours before you had to go back...but it was the beginning of a new chapter in our journey with you...enjoying having our whole family together.
I feel like we are starting on another chapter of your sweet life now. It has become increasingly evident that, against all odds, you are struggling with something more than SMA. A few weeks ago, you had a second MRI of your brain to monitor the increase of fluid in the ventricles of your brain. The doctors did see a slight increase compared to your previous MRI that showed a significant amount of fluid, but are referring us to a neurosurgeon for a full interpretation and to assess if they would recommend doing anything to treat it. Needless to say, I am very interested to hear how they feel it is impacting you and what they would expect to see in the future. For that matter, I would love for someone to come up with a reason it is happening.
On an unrelated issue, the doctors have tested and retested your urine and have found both times, that you have elevated levels of something called homovanillic acid. This is one of the indicators, along with a few other symptoms that is causing concern that you could have something called a neuroblastoma. It is a type of cancer that attaches to nerve tissue. I won't lie. When I got off the phone with the doctor who told me this I started searching the house for hidden cameras.....seriously????? Is this some sort of sick joke???? I feel pretty silly even writing it as a possibility. I hope I am being silly. We will meet with the neurosurgeon one week from today and they are trying schedule the scan for the neuroblastoma for the same day.
I am trying very hard to just deal with known facts and not hypothetical situations right now. Its not easy. I feel the need to remind myself a lot that all of this medical mumbo jumbo is so complicated but your life is much more simple.
I love you John Paul. I can't wait to snuggle soon.
Love,
Mom
Yesterday, you turned 14 months old and exactly one week from today marks one year from the first time we brought you home. The first time home only lasted 12 hours before you had to go back...but it was the beginning of a new chapter in our journey with you...enjoying having our whole family together.
I feel like we are starting on another chapter of your sweet life now. It has become increasingly evident that, against all odds, you are struggling with something more than SMA. A few weeks ago, you had a second MRI of your brain to monitor the increase of fluid in the ventricles of your brain. The doctors did see a slight increase compared to your previous MRI that showed a significant amount of fluid, but are referring us to a neurosurgeon for a full interpretation and to assess if they would recommend doing anything to treat it. Needless to say, I am very interested to hear how they feel it is impacting you and what they would expect to see in the future. For that matter, I would love for someone to come up with a reason it is happening.
On an unrelated issue, the doctors have tested and retested your urine and have found both times, that you have elevated levels of something called homovanillic acid. This is one of the indicators, along with a few other symptoms that is causing concern that you could have something called a neuroblastoma. It is a type of cancer that attaches to nerve tissue. I won't lie. When I got off the phone with the doctor who told me this I started searching the house for hidden cameras.....seriously????? Is this some sort of sick joke???? I feel pretty silly even writing it as a possibility. I hope I am being silly. We will meet with the neurosurgeon one week from today and they are trying schedule the scan for the neuroblastoma for the same day.
I am trying very hard to just deal with known facts and not hypothetical situations right now. Its not easy. I feel the need to remind myself a lot that all of this medical mumbo jumbo is so complicated but your life is much more simple.
I love you John Paul. I can't wait to snuggle soon.
Love,
Mom
Monday, January 28, 2013
Dear John Paul,
I am sitting next to you, here in the ICU. You are pretty tired and trying to rest, but are doing much better and we are getting ready to go home. Several times in the last two weeks however, I have had a few of those moments that inspires a prayer that goes something along the lines of ..."oh God, not yet, not like this." You are here, at the hospital because you got some sort of bug that was making the stuff in your chest so thick that we had two do two emergency trach changes, (secretions get so thick that they block off all air flow) in two days and several other times in those days that things got very close. Those times are so critical....and at one point we had a hard time getting the new trach in once the plugged one was out. Not good. The week before, we were at a muscular dystrophy clinic and your humidification chamber full of water tipped and poured down your circuit and back into your trach....potentially drowning you. Luckily, we caught it pretty fast and you recovered quickly but they called the code just in case.
The appointment itself was very productive, we talked about trying to get a special valve put in your circuit that would allow you to exhale through your mouth...thus passing through your vocal chords....it would just be so amazing to hear your sweet voice!
You had a second brain MRI because some of your doctors are concerned that you could have some inter cranial pressure that could be causing your lack of ability to really focus with your eyes. We could get results as early as today...if they do see pressure...the bad news is there will be a lot of procedures in your future....the good news is that there may be something they can do to help you...which would be amazing!
The second part of this letter I wrote from home and you are just getting ready to start a new day. I love you, little man...
Love,
Mom
I am sitting next to you, here in the ICU. You are pretty tired and trying to rest, but are doing much better and we are getting ready to go home. Several times in the last two weeks however, I have had a few of those moments that inspires a prayer that goes something along the lines of ..."oh God, not yet, not like this." You are here, at the hospital because you got some sort of bug that was making the stuff in your chest so thick that we had two do two emergency trach changes, (secretions get so thick that they block off all air flow) in two days and several other times in those days that things got very close. Those times are so critical....and at one point we had a hard time getting the new trach in once the plugged one was out. Not good. The week before, we were at a muscular dystrophy clinic and your humidification chamber full of water tipped and poured down your circuit and back into your trach....potentially drowning you. Luckily, we caught it pretty fast and you recovered quickly but they called the code just in case.
The appointment itself was very productive, we talked about trying to get a special valve put in your circuit that would allow you to exhale through your mouth...thus passing through your vocal chords....it would just be so amazing to hear your sweet voice!
You had a second brain MRI because some of your doctors are concerned that you could have some inter cranial pressure that could be causing your lack of ability to really focus with your eyes. We could get results as early as today...if they do see pressure...the bad news is there will be a lot of procedures in your future....the good news is that there may be something they can do to help you...which would be amazing!
The second part of this letter I wrote from home and you are just getting ready to start a new day. I love you, little man...
Love,
Mom
Friday, January 4, 2013
Dear John Paul,
Wow! Where do I start? At present you are two days away from celebrating your 13 month birthday. A lot has happened in the month since your big 1 year milestone. You had a lot of "firsts" actually...you attended your first Mass...celebrated right in our dining room...also, your first Christmas at home...which was absolutely wonderful...your first taste of a candy cane...on December 22nd you also had your first pneumonia diagnosis which was scary for mommy and daddy but luckily, it was quickly downgraded to tracheitis which is a lot easier to treat for kids with SMA. You did have to spend a couple of days at the hospital after Christmas when you started bleeding a lot from your trach because of your infection, but we got a better medicine and you were able to come home fast. You also celebrated your first Kilner Christmas at the Heights (daddy's alma mater) and got to meet a whole lot of your family that you hadn't gotten to meet yet...and everyone loved meeting you and couldn't get over how big you've gotten...already wearing 24 month clothes!
I just want to say thank you, John Paul, for the great joy you bring to our family. My favorite thing in the world is watching your siblings love you in different ways...Ben brushing your hair, Madie kissing on your toes or playing Play-Doh with you, Joe singing Christmas carols to you, Liam reading you stories and just sitting and talking with you...all of them playing games with you on the iPad...
I savor every moment.
I love you so,
Mom
Wow! Where do I start? At present you are two days away from celebrating your 13 month birthday. A lot has happened in the month since your big 1 year milestone. You had a lot of "firsts" actually...you attended your first Mass...celebrated right in our dining room...also, your first Christmas at home...which was absolutely wonderful...your first taste of a candy cane...on December 22nd you also had your first pneumonia diagnosis which was scary for mommy and daddy but luckily, it was quickly downgraded to tracheitis which is a lot easier to treat for kids with SMA. You did have to spend a couple of days at the hospital after Christmas when you started bleeding a lot from your trach because of your infection, but we got a better medicine and you were able to come home fast. You also celebrated your first Kilner Christmas at the Heights (daddy's alma mater) and got to meet a whole lot of your family that you hadn't gotten to meet yet...and everyone loved meeting you and couldn't get over how big you've gotten...already wearing 24 month clothes!
I just want to say thank you, John Paul, for the great joy you bring to our family. My favorite thing in the world is watching your siblings love you in different ways...Ben brushing your hair, Madie kissing on your toes or playing Play-Doh with you, Joe singing Christmas carols to you, Liam reading you stories and just sitting and talking with you...all of them playing games with you on the iPad...
I savor every moment.
I love you so,
Mom
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