Thursday, September 30, 2010

Christina's after school routine

A friend on my Down syndrome Yahoo group is concerned because she feels her son is very limited when he gets home from school, not wanting to participate in normal activities. Christina is similar in that she has a set routine when she gets home from school, and rarely deviates from it.
She doesn't want to read a story, play with her sisters, or go for a walk. She only wants to play alone with her Elmo doll, or watch her favorite movies on TV. Period. The only exception to this routine is if I can get her to stay in the yard after she gets off the bus. She enjoys nature and throws the ball for our dog. It helps her unwind. 

I don't let it bother me like it once did. She has a lot of 'have to's' at school, and home is her down time. I give her time to veg out doing a mindless activity after school, and usually, by dinner she is more herself. I save shower/bath time for just before bed, and then she'll usually let me read her a book (same one every time). I think she's just humoring me. She gets lots of stories in school. 
In that way, she is similar to my husband who wants to veg out after a day at work!

I think there is a comfort to routine after what can be a very taxing school day. 

Last night we had a friend come over for dinner with her big family. Christina had a marvelous time playing dress up in the basement, but had a big meltdown when they left at 8:00. It took over an hour to get her upstairs and ready for bed. She probably enjoyed the break from her routine, but it still ruffled her feathers.

I have to accept her needs after school and not deviate from them more than necessary.

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Tuesday, September 28, 2010

Down syndrome teen scores 51 yard touchdown!

Check it out over at my friend's blog
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You have our backs

Now that I am on networked blogs, I get more comments on Facebook than here, so my friends have been sending me much needed prayers there. I owe you an update on Christina's and my backs.
 My spine has been locked up and developing arthritis, because I neglected to find a new chiropractor here in CT when I moved two years ago. The pain which crippled me in bed for two weeks was cured by one adjustment where there wasn't even a crack! Now with some ongoing treatment we can prevent a crisis like I just suffered through.
 I felt great for the banquet, and I am back among the active, praise God!
Now Christina will be undergoing an MRI for which she must be sedated later this week. Then we will decide if spinal surgery is indicated.
Good thing I am in good shape for this. Please keep the prayers coming.
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Friday, September 24, 2010

Irish cartoon to feature character with Down syndrome

A children's cartoon in Ireland will feature "Punky" a six year old girl with Down syndrome. It promises to be a positive portrayal, treating her as just one of the family. This cartoon is perhaps a result of living in a nation where 90% of babies with Down syndrome are not aborted. Abortion is still illegal in Ireland, and a visiting US professor wrote an article about how casually children with Ds are accepted in Irish society.
Gerard O’Rourke from Monster animation says that the main character Punky is a playful six year old girl who lives with her family but she is slightly different to other children. O'Rourke told the Evening heard that judging from their research this is the first ever series where the main character has Down Syndrome.
"It was unique and scary to deal with the subject matter on a mainstream cartoon. Down Syndrome Ireland provided a great bedrock and they were completely behind the idea of us doing the show," he said.
He added: "We wanted it to be shown among mainstream cartoons. It's not like a special show being shown at a special time. It'll be shown in amongst Dora the Explorer and Peppa Pig."
Good for Mr O'Rourke! You can't accept a type of person you rarely see, so frequency of contact leads to acceptance. I have never faced rejection of Christina by children, merely curiousity.

Maybe American TV will carry the show and teach young people in the US what a child with Down syndrome is like, they would certainly have to search far and wide to find one here.

Read the entire story here.
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Wednesday, September 22, 2010

Christina's spinal malformations

My dear friend and outstanding pro-life physician, Dr Judy Mascolo recommended a CAT scan for Christina before OKing horseback riding. Thank God for her cautious wisdom!! The malformations have been there since birth and explain why Christina holds her head to one side.
Monday I met with a neurosurgeon, Dr Jonathan Martin, at Conneticut Children's Medical Center in Hartford and saw what concerned Dr Mascolo; her spinal malformations. Very frightening indeed!

Her top vertebrae in the cervical spine are warped, have extra bone in places, the top vertebra is fused to her cranium, and the fifth bone is missing on the left side, yet the upper vertebra has moved down to fill the gap;  they resemble ice which began to melt and then re-froze in bad position. She may need surgery to make the opening in the center of her vertebrae larger for her spinal chord. This is very scary and we will need your prayers as we do an MRI and then meet with her doctors to make this crucial decison.

Meanwhile, I am meeting with officials in her school to explain why she needs constant one on one supervision and greatly reduced activities. I hate to deny her the  playscape and swings, but we must err on the side of caution, since a wrong move may mean paralysis.

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Monday, September 20, 2010

Please pray for my back

How many times have I reminded myself that when you are doing something beautiful for God, you pay a price. The enemy tries to prevent me from publishing "A Special Mother is Born". Now, for the past week, I have been flat on my back with spasms. Painful ones. I am tired of offfering it up. I want relief prayers. Now.

UPDATE Sept 24: Thank you, my back is still bad, but I finally found a new chiropractor here in CT (I haven't bothered since our move over 2 years ago this month, a case of mom's priorities come last coming back to haunt me) and they seem to have pinpointed the problem as a locked spine in my mid back, which is leaning on the muscles and causing spasms.
 I will be going on Monday for some relief, please God.
Meanwhile, I'm resting and on medication, oh, except for the Ave Maria Banquet, Mass on Sunday, then its Cennacle Sunday at the Friary. I'll be on heavy pain meds, so I can't drive to any of these events, but I'm still going.
Thank God for my husband and teenagers in my house who can drive!

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Saturday, September 11, 2010

Bishop welcomes people of all abilities at ‘Catholics Can’ Mass (CNA)

Thank you Bishop John Wester for the idea of a Mass for those with disabilities and for these words,

In his homily, the prelate said Jesus speaks to us in our sufferings and our challenges. “Our focus is not on the challenge, our focus is on your success, on all that you’ve accomplished, about the kind of human beings you are because of the way you have grown through your suffering and through your challenges,”
I am so proud to belong to a Church who recognizes the special spiritual gifts of those whom the world scorns for their lack of intellect or physical prowess. We really have our priorities right in the Catholic Church! Chris Bell founder of Good Counsel Homes and father to six disabled children said today,
"when we get to heaven, we will see our special needs children way up there (pointing up) because of their great spiritual gifts". I have seen Christina's spiritual gifts, and I am in awe of her ability to communicate with God, despite her speech delays, shows you that God is not hampered by them.

To read the entire article go to:

Bishop welcomes people of all abilities at ‘Catholics Can’ Mass :: Catholic News Agency (CNA)

Friday, September 10, 2010

Is aborting babies with Down sydnrome genocide?

Over at the Devoted Intellectual, they are asking if you think the 90% abortion rate of children with Down
sydrome is, as George Will says, "eugenic gendocide".
Of course, you know where I stand. Here is Keep Infants with Down Sydnrome, the group I co-founded to fight this terrible truth.
 But the more we can engage in conversation on this topic, the more the idea that selecting babies for destruction based on their genetic makeup is genocide, is advanced. The closer American comes to a nation with justice for all, born and unborn.

I'll say it again, the abortion of babies with Down sydnrome is eugenic genocide.
Pure and simple.

Chime in!
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Winner at The Christopher's student film festival

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Tuesday, September 7, 2010

The Nativity of Our Lady


St. Peter Julian Eymard

Even in her cradle, Mary was the delight of the most Holy Trinity, the admiration of the Angels. 'Who is this privileged one,' they ask, 'who at the first dawn of life, is so rich in virtue and adorned with such glory?'

In like manner should we rejoice, since Mary brings us the Bread of Life. From the day of her birth, we salute her as the aurora of the Eucharist, for we know that the Savior of mankind will take from her the substance of that Body and Blood which He will give us in the Adorable Sacrament of His love.

St. Peter Julian Eymard, Our Lady of the Blessed Sacrament, (Eymard Library), 31.
Meditation from Mary Vitamin
Here is a meditation on the meaning of the word latria, or the devotion we owe Our Lady as opposed to worship, which is reserved for the Most Holy Trinity. Latria was the
virtue I was given to cultivate this year when I was given a holy card at the Friary at Epiphany.
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End of summer party

We celebrated the end of summer by watching Kristin Bothur's family on NBC news and enjoying Shana Surek's expressive photos in the Hartford Courant article (see photos here). It was a busy summer, helping her move, and to travel from Philadelphia to Boston to publicize her book 11 On My Own, but it brought our families closer. We watched as our children toasted marshmallows over a bonfire, and played 'manhunt' in the dark, grateful for their friendship. The photo shown here is of Chrisitna's First Holy Communion at St Mary's with Kristin, holding Dominic at our side.
I am pleased that Shana and the NBC TV crew focused their cameras on the lovely statue of Our Lady in their work, it gave the viewers a true sense of just what keeps this mother of eleven centered on her mission. Fr Tito was eloquent in the piece, saying, "its always a good to invest in the mother-child relationship". If only the children's father understood this none of what the family endured this summer would have been necessary, yet in His wisdom, Our Lord has brought blessings from sinfulness, and grace from depravity.
Now we have to pray for the father of these children to repent and support his family.

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Our children deserve research!

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Friday, September 3, 2010

Bella's backyard shrine

For days, Bella and Gabbi were up to something. They were in the woods, working on a surprise for me, a top secret project. They left to get wood chips, and came back dragging no less than six huge bags of chips. I had my suspicisions, but the result far surpassed my guesses.
Accross the stream from the henhouse, down a winding wooded path, lined with woodchips, up a dry stream bed, and around a tree in the path, likes the Shrine of the Holy Family.
The Velasquez family now has a shrine where they can hear the forest music as they pray to the Holy Family.
Thank you Gabbi and Isabella!
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