Tuesday, June 11, 2013

Prayers for Gage!

Along my journey with Tommy, I have the opportunity to meet other families who also face a different and unique journeys with their kids. One day while taking Tommy to his private paid OT services, I met Gage and his family. Since I saw him, he stole my heart. He is a very sweet little boy who deserve to enjoy life as any kid of his age. Gage is a couple of months younger than Francis. Gage was born with Mastocytosis which is a rare skin disease that bring a lot of health complications. When Kellie, Gage's mom,  explained to me about Mastocytosis she mentioned Gage's case may be unique in the world.  Here are some lines how Kellie discribes Mastocytosis:
"Mastocytosis is a rare skin disease for which there is currently no known cause or cure. All people are born with cells called mast cells within every tissue of their bodies.  Mast cells contain chemicals (histamine and heparin) that are released into our systems to perform various duties, playing major roles allergy reactions and anaphylaxtic reactions, but also play a protective role as well in immune responses and wound healing." http://kellie-ewell.blogspot.com/
Gage will have a bone marrow biopsy in July. This is a procedure that is too much for a little one, but it needs to be done. I am a mom, I truly understand Kellie's worries and broken heart. Click here to read more details about Gage coming biopsy in July.

Please keep Gage and his family in your prayers. 

Wednesday, June 5, 2013

Miracles happen in very simple ways

I do believe that miracles happen in very simple ways. God has chosen me to weakness them along my journey with Tommy. Many people may think we are in an unfortunate sitiation because of having a child with Trisomy 21 or some people may look at us with sympathy. But we all are in this world with a propose and if we truly believe in God we will be in his grace to be part of his Kingdom; but for this, we have to become like little children, which I think for many "normal" people this may not be possible, but those who are not considered "normal" are ahead of us to become part of God's Kingdom because of the purity of their hearts. I understood this one day when I went to mass; that day, I understood I am rising a child that is closer to God's grace than the rest of us. So I have accepted God's mission to rise my son and help him to reach his full potential.
"2 He called a little child and had him stand among them. 3 And he said: "I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven. 4Therefore, whoever humbles himself like this child is the greatest in the kingdom of heaven. 5"And whoever welcomes a little child like this in my name welcomes me. 6 But if anyone causes one of these little ones who believe in me to sin, it would be better for him to have a large millstone hung around his neck and to be drowned in the depths of the sea." Matthew 18:2-6
I do believe Tommy is a miracle and I am here to weakness that!  

January 14, 2013 is marked in my calendar as a special day, because Tommy suddenly began to do things at school he was not doing before and the teacher email me to tell me about it.  Since January, we have been seeing just positive and progressive changes on him.  

"Whoop whoop moment:  Tommy in the motor room at 9:20 a.m. independently jumping on the tramp for over 5 minutes then 5 plus independent climbs up to the top of the bolster to grab on to the trapeze swing.  The rest of the day we saw increased affect, social awareness, a completely independent transition and the word applesauce to request in combo with a picture card over 3 times.  I also saw cause/effect toy exploration with no stimming.  Big Day!!" Teacher's email
 June 3rd, 2013, Tommy suddenly began to follow instruction like never before that my husand and I noticed the difference right away since the day started.  The whole day was full of surprises. Francis and Tommy were spontaneously pretending play (Tommy completely lost his pretend play skills after January 20, 2013). They were running around and then Francis began to push Tommy and I said: Francis, no pushing. Then, they began to run again. Francis pretended to push Tommy and Tommy pretended to fall down, both of them were laughing (Of course, They were laughing at me). So I laughed. This was a real interaction with not intervention, just them being kids and Tommy being part of it.  Later, They were playing independently in the climber, and then, I just had to step back and watch them to play very properly, except for Francis puching Tommy. Tommy is more careful with Francis. Then, Tommy began to explorer and think what if... "I slide down from a standing position". (It is great activity for balance, but it is not a saved idea) and then he did it. He was successful and then, he jumped to the ground when he got to the edge of the slide. I thought that it would be hard to correct him. So he tried it again, but this time he wasn't successful and felt hard, but didn't cry. So I told him: Tommy, it is not safe, you have to sit if you are going to play on the slide; and then, he listened and sat every time he went down the slide. On Monday, I suddenly noticed an emotional growth on him, too. Really, he was acting more mature.  By bath time, he suddenly began to color. Tommy has struggled for 2 years with attention span deficit and having a hard time to even look at the paper to color. Coloring it was something he used to enjoy! He was even tracing vertical and horizontal lines. He was starting to work on circles, but these skills were gone. Then on Monday, he took the star crayon we have in the bathtub and began to color under the influence of his own desire. Then, he drew a perfect circle on the bathtub. I was surprised, so I didn't say anything to him I just observed what he was doing, took pictures and began to sign the song "Colors all around" and he joined me to sing.


I couldn't believe he was enjoying 
just coloring and keeping his attention
on the wall rather than getting isolated.


Tommy has struggled so much after the hospitalization and then yesterday, like magic, things began to change for good again. Tommy has AUTISM, which is the first time I am going to post about it and this is what it's truly affecting him. But I has my faith in God that Autism will go away. On Monday, I weakness God's presence through Tommy's interaction and being aware of his surroundings. God let me know that he has marcy!

My dear Aunt has done something special for us. She is not a wealthy person and they work hard to make money with a small business she and her husband have. But she feels she can not support us because being so far away, so she decided she will do something special for Tommy. She offered to the church from the small town where my mom's family is a donation, a Divine Child Statute and pray for Tommy's health. She donated the Divine Child Statute to the church on May 25th, 2013  and it  was a big celebration, the whole community got together to welcome the Divine Child at the church and prayed. Remember Jesus's words:

"For where two or three are gathered together in my name, there am I in the midst of them". Matthew 18-20
God is listening and seeing the faith my aunt has, as well as, her kindness of offering prayers for Tommy's healing. One day, we will travel there to visit the Divine Child. Sunday, June 10th there will be a mass offered for Tommy's health.

Many of you may not know who the divine child is. The Divine Child has a special place in the hearts of Latin American people because it represents Jesus from his nativity to the age of 12. According to catholictradictions.org:

"The devotion to the Divino Niño in Bogota Colombia began with Fr. John Rizzo, a Salesian priest from the region near Arenzano, Italy, who already had a great devotion to the Infant Jesus.
In 1914, the Salesians were building a grand church in Barranquilla, Colombia, in an extremely poor locale. The Superior asked Father Rizzo to ask for donations from the people for the construction of the new church, something he was reluctant to undertake because of the immense poverty of these people, so much so that when he returned to the rectory he had not collected a cent! The next day, the Superior asked him to go out again and gather the necessary donations. This time, Father knelt in front of the Blessed Mother to ask her help in this difficult assignment. In seeing the Child Jesus in the arms of His Mother, Father John thought to himself that up to now, he had asked for favors through Mary’s intercessions, but he had not brought his prayer requests directly to the Child Jesus. Father John decided that he would entrust all his efforts to the Child Jesus. The following day, full of anguish he went to pray before the statue of Mary, Help of Christians. Then with all his soul, he pleaded that the Holy Child give him the courage to beg for the works of God. His prayers were answered.Raising his eyes, he saw the little Child Jesus, smiling with His arms outstretched as if to say "Take me with you. I want to accompany you."  From that time, he became a great apostle of the Holy Child. He spoke of Him, he worked for Him, and he dedicated his life and all his energy to promote devotion to the Infancy of Our Lord... " Click here to read the full story. 
Baby Jesus or the Divine Child Jesus has a special place in Latin America. The strong influence of the global advertising of Santa Claus (St. Nicholas) has not totally vanish the reason of Christmas, the Nativity of the Divine Child. One thing I remembered from my Christmas in Panama when I was a child is my neighbors and relatives asking me, What did the Baby Jesus bring you for Christmas? That simple question kept me in perspective about the real reason we celebrate the Nativity on December 25. 
Tommy has broken so many stereotypes about his diagnosis because God is there acting in a mysterious way. Please keep praying for my son.