Thursday, February 11, 2016

To My Son, On the Eve of His Second Birthday

Isaac, tomorrow is your second birthday.  I am so happy I could cry, I could burst, but for now you are sleeping soundly just a few feet away, so I will remain calm and hope not to disturb you.  I love you so much, and maybe someday you will understand how my love for you fills my heart and soul.

This morning, I woke up early, before anyone, to get ready for Mass. It is Ash Wednesday, the first day of Lent.  I wanted to take you along, because you enjoy Mass so much, but 7:00 is a bit early for you.  Natalie got up while I was in the shower, and I got out just in time to see her closing our bedroom door quietly behind her, confused that I wasn't still in bed.  She blinked at me, with her hair in this messy blonde mane, and said "It's morning time?"  A question, verifying that her suspicions were correct.  I sent her upstairs to get Daddy. He often sleeps upstairs because if he sleeps in our room, your breathing keeps him awake.  Through no fault of your own, Isaac, you do breath very loudly, and while I miss sleeping next to him every night, I understand.  I hate that when he sleeps in our room again, it will be because you are gone.  Instead, I imagine us having a third bedroom downstairs, but then I start to get that panicky feeling of not having you just a few feet away for as long as we have you.  When Natalie came back downstairs, I heard you cooing in your crib.  I hoped you were dreaming, and not awake yet.  When I returned from Mass, with ashes on my forehead, you had just woken up, and Daddy was talking and playing with you in our dark, quiet room.  You gave me such a funny look, disconcerted, uncomfortable with the black cross that was not part of my usual countenance.  You got used to it, by the time your treatment was over.

We all loaded up, you, me, Daddy, Natalie, and Nurse Jessica, and drove back to the church for story time.  You squealed with joy when it was time to sing the Hello Hello song, laughed when we played London Bridges and you and I got caught.  Natalie announced that she wanted to lead everyone in singing Happy Birthday to you, which she did beautifully and sweetly. Later, she ran over to you to tell you a secret, and I heard her whisper "I love you."

We drove to Boulder for Natalie's doctor appointment. We wanted to have her cough checked out, since it has lingered. She was worried that she might have to get a shot, since she has seen you get so many shots.  You fell asleep on the way there, the warm sun and the movement lulling you to sleep.  You stayed outside and watched the fountain in the courtyard with Daddy and Jessica.  We didn't want to bring you into the hospital, no taking chances with exposure to gross stuff.  But it was also the most beautiful day, 60 degrees, sunny, with moisture in the air from the melting snow.  On our way home, we stopped at the store.  Daddy ran in, and you were so tired that Jessica had to distract you from your tears by showing The Gruffalo on the iPad.  Home again, and you fell asleep so sweetly for your nap, while Natalie and Daddy played outside in the snow and mud.  I spent the rest of the afternoon and evening baking you a cake for your birthday, making cupcakes to share with friends, and heart shaped sugar cookies (just like Grandma's), for Natalie to take to preschool for Valentine's day.  I used 10 sticks of butter.  I wondered which frosting you are going to like best tomorrow.  Vanilla buttercream or chocolate?  I think the chocolate, because it's thicker and will stay on your spoon and the tip of your tongue better.  After the rest of you were asleep, I frosted the cupcakes, wrapped your birthday gifts, patted you back to sleep, prayed the last day of the Novena, and finally sat down to eat a cupcake.  I was so mad at myself for not buying wrapping paper for you, but the reused gift bags and tissue paper are bright and cute, and you will be able to grab onto the paper to help open your presents.  I displayed them on the table across from your crib, so when we bring you from the bedroom to the living room for your treatment, you will see Grover and Oscar and a lion looking back at you. Natalie will probably be more excited than you!  I feel guilty for not celebrating her birthday every month.  She knows her birthday isn't until July, but she doesn't understand why hers takes so long to come again, when yours is every month. But this time, my son, this time is a real milestone. But every day is a milestone. Every day is a gift.

I wonder, sometimes, if other parents have such vivid memories of their children's first years. Daddy and I know you so well, Natalie has always known you best.  I remember when you were just a couple of weeks old, and Natalie was about 20 months old. She could tell us when you needed your diaper changed or when you were hungry by how you cried.  I remember staying up at Grandma and Grandpa's house, and the neighbor girl wanted to hold you, but she was afraid you might spit up on her.  I assured her that you had never spit up, and as she held her finger out for you to grasp, you barely touched her.  She called you gentle.  That word, gentle, overshadowed my concern that you didn't seem to have that grasping reflex.  My uncle noted how much you used your belly to breath, and asked if it was normal.  Daddy and I thought it was, we thought we remembered Natalie doing it. You shouldn't have been doing it, it wasn't normal.  But that was almost two years ago, and we have come so far and learned so much.  Words fail, Isaac, to describe how grateful I am that you are here with us tonight, that we have had so much time with you, and more to come.  I love you, I love you, I love you, we love you.  Keep growing, and changing, and learning, and loving us back.

And now it is midnight.  Happy Birthday sweetheart!

Saturday, February 6, 2016

A Mid-Novena Reminder!

Happy Super Bowl Weekend from the Cranes!

This past fall and winter, I have unwittingly become a football fan.  I had never enjoyed watching a football game of any sort, and certainly did not have a favorite team. It turns out that after 10.5 years in Colorado, where the entire state seems to bleed orange and blue, and having a son, a husband, and parents who do enjoy the game, I can say that I want the Broncos to play well tomorrow, and to win.  I know the names of quarterbacks, have a general knowledge of how the game is actually played, and have come to appreciate the athletic skills of many of the players.  Had you asked me even one year ago what I thought about professional football, I would have made some comment about concussions.  Now I make a comment about concussions followed up with something like "Did you see the game against the Patriots?"  I'm not dressing myself and my children in Broncos gear, but we are looking forward to watching them play in the Super Bowl. Come to think of it, Isaac has an orange shirt he could wear... My point is this: you may have an idea of how your life is going to be, but there is always change. Two years ago, we were awaiting the birth of our son, still not sure if his name would be Isaac or Gregory, and definitely not expecting the life changing diagnosis that he would receive.  One year ago, we were preparing for what we thought would be Isaac's only birthday.  Today we are happily planning his second birthday, his party, and we had professional photos taken in honor of the event.  I have a friend through the SMA Type 1 Support group whose son is celebrating his first birthday today. She also thought this day would never come, and his first year of life was probably not what she expected it to be.  There will always be plans, there will always be changes to those plans, there will always be God's plan.  And because of this we always have hope.

Bedtime! Snuggles and his favorite music box.  And yes, that's a picture of Super Girl on his wall :)

Today is the fifth day of the Novena to Our Lady of Lourdes.  Please continue to pray for Isaac as we near his second birthday!  My prayer is that he wakes up on his birthday, also the Feast of Our Lady of Lourdes, completely cured of SMA.  It seems far-fetched, it seems impossible.  But it isn't!  You can find the entire novena here.  Enjoy the rest of your weekend, and if you are here in Colorado, enjoy the blue skies and break from the freezing weather!  Thank you for your prayers and support!

O Mary Immaculate, Mother of God and our mother, from the heights of your dignity look down mercifully upon us while we, full of confidence in your unbounded goodness and confident that your Divine Son will look favorably upon any request you make of Him in our behalf, we beseech you to come to our aid and secure for us the favor we seek in this novena.
(make your request)
O Brilliant star of purity, Mary Immaculate, Our Lady of Lourdes, glorious in your  assumption, triumphant in your coronation, show unto us the mercy of the Mother of God, Virgin Mary, Queen and Mother, be our comfort, hope, strength, and consolation. Amen.
Our Lady of Lourdes, pray for us.
Saint Bernadette, pray for us. 
Our Father, Hail Mary, Glory Be

Natalie and Isaac playing in the kitchen.  I love them :)

Monday, February 1, 2016

A Time for Prayer

Throughout January, I felt that many of our days were rushed. What parent isn't overwhelmed with school, activities, cleaning, laundry, and the like?  In January, I worked quite a bit more than I had been, and with all of our routines and scheduled activities, the month was just here and gone. Most mornings, Natalie wakes up early and then gets Jeremiah up to watch a cartoon and have breakfast.  I get up shortly thereafter and check if Isaac is still sleeping.  He usually sleeps until about the time his nurse arrives, but this morning he was laying awake in his crib, and whined when I tried to sneak past him out of the room to grab a cup of coffee before getting him up.  After the nurse arrives, we spend the next 45-60 minutes on Isaac's treatment and getting him ready for the day.  Some mornings, Natalie has preschool or gymnastics.  Once a week we try to get to the Song and Story time, and on Sundays we go to Mass. Isaac has therapy 3-4 times a week, and he naps for 1-2 hours every afternoon. When I work, I try to be back home before he wakes up from his nap, because he tends to wake up kind of grumpy.  We have dinner by 5, so Isaac can join us at the table before we start the bedtime routine around 6:00.  We have the kids in bed a little after 8, and then we have an hour or two to finish some chores, make Isaac's formula for the night, and relax before heading to bed.  Some nights, Isaac needs to be repositioned every hour or two and gently patted before he falls back to sleep.  Other nights, he doesn't make a peep for hours, except maybe to coo or giggle at a dream. I really don't mind waking up to those sweet sounds...

One night, as I was standing by Isaac's crib, patting him and stroking his hair until he fell back to sleep, I was hit with an overwhelming sense of love and gratitude and awe.  I thought about how incredible it is that a person, my son, would be here on this earth, and his sole purpose was love- to be loved and then to love.  Then I thought, 'well, who isn't here to be loved?'  People accomplish great things, or they accomplish small things. People are a joy to be around, or maybe they try your patience.  What a person can or can not do, what he says, what she does- like it or not, people are here to be loved.  Isaac just makes it easy to both love him and adore him; caring for him is a joy.  But love doesn't necessarily mean joy and feelings of adoration. It usually means a choice, making the choice to give a person what he needs, to care for someone spiritually and physically, and to do it even when it hurts or goes against your natural tendency to avoid that person.  The unborn, the elderly, the dying, the homeless, the foreigner, the disabled, the criminal, the politician, the weird kid in class, the annoying co-worker. We all have someone that needs our love, our choice, our joy.  Isaac is special because, to strangers, he is different, sick, disabled; but he inspires great acts of sacrifice and charity and generosity and compassion.  He inspires Love.  I am grateful beyond words that God gave him to Jeremiah and me to know and love as our son.  I am also grateful that, with his life, he gives others opportunities to grow in faith and hope and charity.  Thank you for responding to those opportunities. I hope that everyone who reads this update will think of yet another person who needs your love (perhaps someone who isn't as easy to love as a bright-eyed two year old boy), and make the choice to love.

I would like to ask another favor of everyone reading this who is willing to pray.  Tomorrow, February 2, begins the Novena to Our Lady of Lourdes.  Isaac's birthday is also the Feast of Our Lady of Lourdes, and I ask that everyone pray the novena with the intention that Isaac continues to grow, remains healthy, and for his miraculous cure.  I rarely think about a cure anymore, because I think Isaac is perfect just as he is, but I still have dreams of waking up some morning to see that he has rolled over, taken his mask off his face, and fallen back asleep in whatever position he wanted, breathing on his own.  Our Lady of Lourdes is one of the many names we Catholics give to Mary.  This one is due to apparitions that began on February 11, 1858, in Lourdes, France.  The site of the apparitions has become a pilgrimage site, especially for people seeking physical and spiritual healing.  Miracles have occurred there!  I have holy water from the spring at Lourdes, and I bless Isaac with it every night.  A novena is prayed for the nine days leading up to the feast day.  So I invite you to begin tomorrow, and set aside a few minutes of prayer for Isaac and our family!  Below is a link to the novena, and below that I will copy the first day's prayer.  If you are not Catholic or just don't feel comfortable praying to Mary, remember that we are asking for Mary's intercession with her son, the same way that she interceded on behalf of the bride and groom at the wedding feast in Cana. Her intercession is powerful, and it produces results even greater than wine.  Even greater than really good wine!

Novena of Our Lady of Lourdes

Day 1, February 2
Be blessed, O most pure Virgin, for having vouchsafed to manifest your shining with life, sweetness and beauty, in the Grotto of Lourdes, saying to the child, St. Bernadette: "I am the Immaculate Conception." A thousand times we congratulate you upon your Immaculate Conception. And now, O ever Immaculate Virgin, Mother of mercy, Health of the sick, Refuge of sinners, Comforter of the afflicted, you know our wants, our troubles, our sufferings deign to cast upon us a look of mercy.Image of Mary at Lourdes
By appearing in the Grotto of Lourdes, you were pleased to make it a privileged sanctuary, whence you dispense your favors, and already many have obtained the cure of their infirmities, both spiritual and physical. We come, therefore, with the most unbounded confidence to implore your maternal intercession. Obtain for us, O loving Mother, the granting of our request.
  (state your request)
 Through gratitude for your favors, we will endeavor to imitate your virtues, that we may one day share your glory.
Our Lady of Lourdes, Mother of Christ, you had influence with your divine son while upon earth. You have the same influence now in Heaven. Pray for us; obtain for us from your Divine Son our special requests if it be the Divine Will. Amen.Our Lady of Lourdes, pray for us.
Saint Bernadette, pray for us.

O Mary Immaculate, Our Lady of Lourdes, virgin and mother, queen of heaven, chosen from all eternity to be the Mother of the Eternal Word and in virtue of this title preserved from original sin, we kneel before you as did little Bernadette at Lourdes and pray with childlike trust in you that as we contemplate your glorious appearance at Lourdes, you will look with mercy on our present petition and secure for us a favorable answer to the request for which we are making this novena.

(make your request)
O Brilliant star of purity, Mary Immaculate, Our Lady of Lourdes, glorious in your assumption, triumphant in your coronation, show unto us the mercy of the Mother of God, Virgin Mary, Queen and Mother, be our comfort, hope, strength, and consolationAmen.
Our Lady of Lourdes, pray for us.
Saint Bernadette, pray for us.

End each day by praying the Our Father, Hail Mary, and Glory Be.
Our Father, who art in heaven, hallowed be thy name.
Thy kingdom come, Thy will be done on earth as it is in heaven.
Give us this day our daily bread,
and forgive us our trespasses as we forgive those who trespass against us.
Lead us not into temptation, but deliver us from evil.  Amen.

Hail Mary, full of grace,
the Lord is with thee.
Blessed art thou among women,
and blessed is the fruit of they womb, Jesus.
Holy Mary, mother of God,
pray for us sinners, now and at the hour of our death. Amen,

Glory be to the Father, and to the Son, and to the Holy Spirit,
as it was in the beginning, is now, and ever shall be,
world without end. Amen.