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,
Mom
Sunday, May 6, 2012
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!
Mom
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!
Mom
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,
Mom
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,
Mom
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