Tuesday, May 29, 2012

Dear John Paul,

Today was a quiet day.  Your father and I spent the morning in your room, brainstorming about how to change the world. This is the thing:  Right now, society does not recognize how valuable your life is and therefore does not have the systems in place to support caring for someone with your needs.  This is a true poverty...and it will not change unless someone demands a change and shows how beautiful your life is.   You are a gift not only to us, your family...but to all of society....you are a teacher of things that the world desperately needs an education in...a teacher of true love, of the value of suffering, of patience and perseverance.    It may take time and definitely will take prayer, but little by little, one person at a time, you will make a difference and will help the next child who needs as much help as you do.

Both your father and I got to hold you today and while your were with your dad...you did something pretty cool: you initiated moving your head just slightly, several times.  It was awesome!  We are so proud of you.

Love you always,

Saturday, May 26, 2012

Dear John Paul, 

Today (and by today I mean Friday), was one of those totally crazy days...Ben woke up with a fever of 102 and Thursday evening the air conditioning ceased working....you got to hang out in the spare room that Pop-pop built in the basement for most of the day in order to stay cool and I probably just looked like a chicken with my head cut off, constantly running between floors...we had visits from Aunt Katie and the Carney cousins, one of my good friends, Mrs. Arguello...aunt Suzanne was here helping out, two friends who are nurses who want to get to know you also came by...not to mention the AC repair man!

By the end of the day the AC was up and running again but as of 10 Friday night, Ben's fever is still hanging out so I'm praying that he kicks it during the night and that he didn't give it to you because he was definitely giving you kisses during the day on Thursday.  We may just keep you in your room for isolation purposes tomorrow, just to be on the safe side.

We continue having issues getting a consistent team of nurses...for the most part the most recent nurses have seemed to have decent ability...just not a decent level of commitment.  Next week, Dad, Joey, Liam and Madie are going on a road trip to Michigan for uncle Joey's wedding.  Thank goodness for aunt Suzanne who is awesome at all of your care....today she even changed out your circuit and did your trach change.  Suzanne is planning on coming to help take the edge off the night shift while Dad is away.  Aunt Monica is also coming down to help entertain Ben while everyone is gone.

I love watching you sleep so peacefully and I hope tomorrow will be quiet enough for us to hang out and read stories, snuggle, do a little massage....

love you so,

Tuesday, May 22, 2012

Dear John Paul,

Today is the fourth consecutive day that your father and I have been pulling the night shift, either training nurses or covering for no shows.  Typically, since your dad is more of a night person--he stays up for the first shift until 2 or 2:30am and that's when I start my day.

I have to tell you, your dad is a pretty amazing person.  I am so blessed to have him as my husband and head of our family.  He works tirelessly, not only providing for our family's material needs--but is 100% invested in your care and in leading our family with his positive attitude and supernatural outlook.  He is constantly brainstorming creative ways to "beat the system" of established ways to get the help we need.  He is always looking to give me a break when he has slept less than I have and pushing forward to be present to the other kids as well.

I can't imagine being on this journey with anybody else.

More and more of your extended family is getting trained up to learn how to care for you so that they can help give us a break when the nurses call out unexpectedly.  Grandma Gabriel came today and is planning on coming regularly to train, Aunt Suzanne is already pretty much a pro, and your Godmother, Aunt Mary is hoping to start training too.

This is a quiet week on the appointments front, but I am looking forward to learning the rest of your body with the massage therapist of Wednesday.  Right now I only know how to do your face and legs but should learn the rest then.  

As always, I love you so,

Saturday, May 19, 2012

Dear John Paul,

It's almost 3:30 in the morning and I have been up with you for almost an hour.  Yesterday you met your eye therapist through the county Infants and Toddlers program.   She was great and had all sorts of great suggestions for fun things for you to look at.  I gave you your massage in the afternoon and we got to snuggle during your afternoon meal.  After dinner, I went to bed with so I could get up early and dad and aunt Suzy gave you a bath and did trach care.

You have been going through trach suction catheters like crazy this month!  We have an allowance of 300 per month and we ran out out of those a long time ago.   I bought 150 online and we are down to our last 15 of those so we are having to reuse them to get us to Monday when more are coming...and even those are being delivered a little early. 

Even though you have been so congested in the last couple of weeks, you have been doing great...satting well and having great alert time.

The last few days have been very busy with training new nurses and trying to coordinate various doctors to get appointments and orders for your splints, a Kid Kart (handicap stroller), begging for more catheters, transition to Model Waiver, etc....I'm looking forward to having some of the administrative craziness to slow down so that I can focus more on trying to do more fun things with you. 

Earlier this week you had a great visit from Nanny and Pop-pop Aronne.  You and Pop-pop had a nice long talk, hanging out on the floor.  We have had several beautiful days and you did have a lovely patio dinner the other day.  I'm hoping to have some more outdoor time with you this weekend. 

Love you so,

Tuesday, May 15, 2012

Dear John Paul, 

Big news today....MD Model Waiver program  approved 20 hours a day 7 days a week of nursing care.  Everyone was preparing me for far less so I will happily chalk this up to a miracle.  You have so many people praying for all of your needs that I have no doubt their prayers were heard.  Tomorrow, you will officially be "on the waiver" and switch to our 3rd nursing agency....so the up all night training new nurses routine resumes after tonight as well.  Now we have to pray that your guardian angel is permitted to take the form of an amazing nurse....or, even better, four nurses.

On Monday, we went to Children's for a GI/nutritionist check-up.   You did great and weighed in at a wopping 17.5 lbs!!!  They even weighed you twice just to be sure. Your big brother Ben, who will be 2 very soon weighs 21 lbs so in another month I won't be shocked if you have caught up with him!

We also popped by the NICU for a visit a several of your favorite nurses were thrilled to see you and how well you were doing.  We also bumped into one of the doctors who was very pessimistic about your prognosis and had even suggested not giving you a G-tube to feed you.  She was amazed at how well you are doing.  We told her about your progress and the study drugs...we hope the next time she diagnoses someone with SMA, she offers a little more hope.  We are so grateful that early in our journey, we were put in touch with so many great families who are fighting for their children. 

Your dad and I are constantly thinking about how we can best give you stimulation given your lack of ability to move...your uncle Alex came up with the great idea of setting up a fish tank for you to watch....I thought this was brilliant!  I have to admit....with the exception of my children, I'm not very good at keeping other living things....well...alive.   But I will definitely try because I think you would really love some goldfish at least for starters!

Love you so,

Friday, May 11, 2012

Dear John Paul,

It's about 1:45 in the morning on Saturday and I am beginning my day with you.  You have had a very busy couple of days...Thursday, you had you first of many massages!  I learned how to massage your face and legs and the therapist will come back to teach me the rest of you.  You really seemed to like it and I think it will really help with some of your tighter areas. 

Friday, you had an ENT (Ear, Nose Throat) appointment in order to check how your trach is doing and assess if you need a new size.   The ladies at the front desk were taking their time getting you a room so that we could give you your saline neb to keep your airway moist and you ended up desatting to 71 in the waiting room....a room became available very quickly after that!  The doctors said your airway looked great and that there was no need to change your trach size at this point.

After the appointment, since it was a beautiful May day, we decided to stop by the Shrine to the Immaculate Conception and do a pilgrimage to the beautiful statue of our Lady in the garden outside...you were enjoying your lunch while mom and dad prayed the rosary...unfortunately we had to cut things short and get on the road because your saturations started fluctuating a little and we were nervous that you were drying out too much...sure enough we ended up pulling over on North Capital Street to bag and suction you as you desatted to 87.

Don't worry, we aren't going to give up on taking you on adventures....we just have to get our systems set a little better...I think with a power inverter, we'll be able to neb in saline anywhere...and we may just do shorter trips and not combine adventures and doctors visits together.

When we got home, you took a nap and then around 5 pm, you and I got to snuggle sitting on the bench on the patio outside while the kids played in the yard.  Finally you got to have a bath with the help of your uncle Joey who stopped by for a visit and then uncle Bobby helped dad with trach care so that I was able to go to bed early so that I could get up and give your dad a break. 

All in all, a very good day.  Your brothers and sister have really been enjoying doing more and more with you and practicing doing the things they aren't allowed to do yet on their baby doll.  I added some pictures from the week to your slideshow.

Tomorrow is another busy day  with visits from the Carneys, aunt Suzanne (who is awesome at doing pretty much all of your care and can give momma a break), and the Sousa's!

Love you so,

Thursday, May 10, 2012

Dear John Paul,  

I am writing you again in the wee hours of the morning...you look so peacefully quiet, all snuggled up the way your dad left you before he went to bed.  Unfortunately, I had to cancel your eye therapist appointment  on Monday because the cold I thought I had kicked, came back and the therapists won't come unless everyone in the house is healthy.  They don't want to bring germs to the next house they visit...which I definitely can appreciate.  I am feeling a lot better now though and we should be on for your regular PT and first baby massage session tomorrow morning!   I guess at this point it is actually today....I will probably be writing you  a lot of late night/early morning letters in the next few weeks as we are down to one nurse with our current nursing agency and will be switching to a new agency next week....and that means a lot of screening and training of new nurses...

I feel like perhaps I should clarify something I wrote you a couple of letters back....His yoke is light....It's not that your condition becomes easy or that we cease to suffer....no, there is suffering.  I definitely cried until my eyes were swollen shut the day I learned your diagnoses.   But suffering is a necessary part of our life on earth...and we should be grateful for it because it is the way we will be able to get to heaven some day.   It is what we do with our suffering that is most important....do we hide from it, try to avoid it at all costs...or at others' cost?  Do we get angry about it?  Or do we see it for what it is....an opportunity.   John Paul, suffering is an opportunity.  It is an opportunity to love God, love others and to grow in virtue.

All worthwhile endeavors require sacrifice and suffering....the athlete training for the race, undergoes intense physical suffering and is rewarded with a medal.  A doctor submits to the rigors of med school and is rewarded with respect and prestige.  Suffering is made tolerable in light of its purpose.

John Paul, you have a beautiful purpose.

The yoke of caring for you is light because with it comes a great opportunity to love and experience God's great desire for me to be with Him heaven some day.

I hope as you grow, you will learn to use your own suffering as an opportunity.   It is an opportunity to unite yourself with Christ's suffering on the cross and to get to know Jesus better.   It is an opportunity to grow in virtue and help win graces for other people.  It is your opportunity to get to heaven.

I know this is heavy stuff for a 5 month old!  But my hope is that you will be able to read this and appreciate it some day....and I hope that my writing this now, will bring it even more meaning in the context of my reflections at the beginning of this journey we are on together. 

Thank you for the opportunity to love you,

Sunday, May 6, 2012

Dear John Paul, 

Happy Birthday!  Today you are 5 months old!  It's hard to believe it has been 5 months since you entered the world...time has kind of been standing still for me....I am still catching myself dating things December!

Friday night you got to spend a little time with your Nona and Pop-pop and yesterday you got to see Grandma and Grandpa and also got a little visit from Sister Joan and Nanny and Pop-pop Kilner.  Everyone has been impressed with how much better you have been focusing.   You have had a lot of alert time in the last few days as well. 

Tomorrow you have a special vision therapist coming to see you and hopeful we can work on some exercises to help you track better. 

I can't wait for another great week with you...

Love always,

Saturday, May 5, 2012

Dear John Paul, 

It is 2:30 am and your father just went to bed and I am starting my shift.  We haven't had a nurse to care for you since Wednesday night and won't until Saturday night.  We're tired, but you are worth every minute and more.  If ever there was an argument for having big families...you are it!  We have been so blessed with such an amazing family and the extended family of friends that comes with it that have been so critical in helping us take care of you.  I hope some day you will be able to appreciate how much generosity you have inspired in so many.

Believe it or not, your dad and I both had a feeling that some day we would be given a child with special needs.  We had never heard of SMA until you were diagnosed, so that was not what we had imagined but I would say starting with my pregnancy with your sister Madie...I had the distinct impression that I should be prepared for a child with special needs...I thought perhaps a child with Downs Syndrome or cerebral palsy since those were the ailments I was most familiar with.  Towards the end of my pregnancy with you, I impulsively felt the need to visit a church to pray for the your health...before you were born.  While I have tried to visit Jesus in tabernacles for a long time...I had never actually done so with the specific intention for my unborn child until you...although I probably should have.

I guess what I am trying to say is that, when God asks something special from you...he also gives you the tools and the grace to do it.  If ever you are sad or overwhelmed with a struggle you face...I hope you will remember to ask God for that strength....His yoke is light...

I can't wait to hold you again...I went from having a cold to not having enough help from nurses that I haven't been able to hold you in several days...I hope we will be able to have a good long snuggle soon!

I love you so much!

Wednesday, May 2, 2012

Dear John Paul,  Today you had your first official PT session.  We got you in the prone position which we have been really bad about and gave you a good hip stretch...the plan is to get you prone at least once or twice a day.  I also was thrilled to see you moving your jaw this morning!!!  Little by little you are showing signs of improvement that makes all of us so proud.   You also had a very alert day with a lot of eye focus...you were just looking around and taking things in.  It was great! 

This morning, your Dad and I said a Memorare before we blessed you with some water from Lourdes, France that a friend of your Aunt Monica gave you.  Mary, Jesus' mother, appeared to St. Bernadette there and the water from the spring there has healed many people.  We know that if Mary asks Jesus to heal you, He will.  But we also know that Mary is very close to Jesus in heaven and understands His plan better than we do.  While we will always pray for your health, our happiness is not rooted in it.  Our happiness is rooted in knowing that we are cooperating in God's plan...even when we don't fully understand it.  I hope that someday, if a cure is not God's plan, that you will have joy and peace in knowing that by your cheerful acceptance of your illness and offering it to Jesus---that you are bringing many people closer to God and that is a very beautiful and special vocation.

You make us so proud!

Love you so,