The Number 18 and Its Meaning to Me
In this broken world, Michael Z would be 18 months old today. In the perfect world that he is in, he has a glorified body that isn’t affected by disease, time, or sin.
The following is taken from a previous post and it shares my thought on what meaning the number 18 has for our family:
The number 18 has become a special number in our lives. On our 18 week ultrasound several markers for T18 were discovered. Eighteen weeks later our precious Michael Z was born and it was confirmed that he was full Trisomy 18. We were blessed to spend 18 days with our little fighter, who then discovered the beauty of Heaven and the Glory of our Lord. While in the hospital, Michael was on a ventilator, number 18. After his burial, we received the paperwork for the cemetery lot and guess what number it was. Yep, you guessed it, 18.
When we received the news that Michael may have T18, we began an in-depth search for any and all information we could gather on this condition. Before all of this we had not really heard of Trisomy 18 and when we told others what Michael had the announcement was met with puzzled looks followed by the question, “What is that?”
We realized how relatively unaware the general public is about this chromosomal disorder that is the second most common, behind Downs Syndrome(Trisomy 21).
After a lot of searching and prayer we have decided to start this site to help raise awareness of T18 and T13 and the families that have been touched by it. As one of my friends, Michael Hennessey (World record holder for most Ironman triathlons completed in a year, 15) says, “We are not trying to fix these kids, we just want to love them and their families.”
Michael Z: A Year in Heaven
It is hard to believe, our precious Michael Z has been in Heaven a whole year today. My mind races trying to comprehend all that he is seeing and experiencing, most of which, I can only imagine. His broken body has been redeemed from the curse of sin. Sin no longer exists in his world. He is in a place of perfect peace and perfect rest. The thing that gives me the greatest comfort and joy is that he is with his Saviour. Psalms 16:11 says, “Thou wilt shew me the path of life: in thy presence is fulness of joy; at thy right hand there are pleasures for evermore.”
I came across a poem titled, “A YEAR IN HEAVEN by: Lucy Larcom (1824-1893) and I want to share the two verses that I really liked.
One year has heaven’s white portal shut back the sound of sin:
And yet no voice, no whisper, comes floating down from thee,
To tell us what glad wonder a year of heaven may be.
Because we know thee near us, and nearer still to Him
Who fills thy cup of being with glory to the brim,
We will not stain with grieving our fair, though fainter light,
But cling to thee in spirit as if thou wert in sight.
Will You Accept the Challenge?
Ironman for Kids Foundation is challenging you to a spinathon to help us raise money for special needs bikes for some incredible kids. Participants ride a spin bike for 50 min. led by enthusiastic instructors. Pick your time slot and grab a friend or form a team with your co-workers, school, church group, or buddies. 40 high tech spin bikes available each hour. Just $20 gets you registered for this awesome event. Spinners encouraged to raise $100 each from family, friends and contacts.
Out-of-towners don’t feel left out in the cold, spin from your city and donate on-line. You’ll get a way cool shirt too! These precious kids certainly appreciate your support!!!
(Ironman for Kids is a tax-exempt organization and thus donations are tax deductible)
Touching the TRIBE
From my friend, Michael Hennessey’s site.
TRI-BE
Across the globe, there’s a forgotten and lost tribe of people. They’re the children and families of children who have Trisomy 13 and 18. Their children have been given a death sentence. This tribe is hurt and mostly alone, waking up to face death and the fear of death.
For those in this tribe, they learn not to live in the past or the future, but in the now. They learn how to be. They must be.
Their motto can be summed up in 3 “B” words: (tri be). Battle. Breathe. Believe.
Battle – against pain, fear, death, against the very cells in a body. Against anger. Against ignorance.
Breathe – trisomy babies are supposed to forget how to breathe and die. As a parent, you never take a breath for granted. And as a parent, you learn to just breathe. You keep thinking you can do something – you can’t. In fact, you can do nothing. So, as Robbie Seay the singer says: breathe out and breathe again/know that life is hard, but it’s worth breathing.
Believe – is all we can do and the best we can do. Believe that life is precious. Believe that today is a gift. Believe that there is eternal life for the redeemed. Believe that I have a Savior friend who will see me through this. Believe that there is strength in Him.
Our TRI-BE theme was created by a dad living with a trisomy 18 daughter, Zoe.
What is Trisomy 18
Taken from Wikipedia
Trisomy 18 (T18) (also known as Trisomy E or Edward’s Syndrome) is a genetic disorder caused by the presence of all or part of an extra 18th chromosome. It is named after John H. Edwards, who first described the syndrome in 1960.[1] It is the second most common autosomal trisomy, after Down Syndrome, that carries to term.
Trisomy 18 is caused by the presence of three—as opposed to two—copies of chromosome 18 in a fetus or infant’s cells. The incidence of the syndrome is estimated as one in 3,000 live births[2]. The incidence increases as the mother’s age increases. The syndrome has a very low rate of survival, resulting from heart abnormalities, kidney malformations, and other internal organ disorders.
On a personal note:
Our 6th child, Michael, was diagnosed with T18. Michael came into this world facing many obstacles, he had an omphalocele (a portion of his intestines and possibly some of his liver were growing out into his umbilical cord), heart defects-a DORV (double outlet right ventrical) and an AV canal, his right foot was turned in, and his hands were clenched. 95% of the children with Trisomy 18 don’t carry to term and if they do, many don’t survive the first year. As you can imagine, we were devastated that our son would be facing such insurmountable odds, but we also believe that God was still in control and could heal our son, if He so chose to.
Michael Z was born April 3, 2009, and his conditions was more serious than we had previously thought.
The number 18 has become a special number in our lives. On our 18 week ultrasound several markers for T18 were discovered. Eighteen weeks later our precious Michael Z was born and it was confirmed that he was full Trisomy 18. We were blessed to spend 18 days with our little fighter, who then discovered the beauty of Heaven and the Glory of our Lord. While in the hospital, Michael was on a ventilator, number 18. After his burial, we received the paperwork for the cemetery lot and guess what number it was. Yep, you guessed it, 18.
When we received the news that Michael may have T18, we began an indepth search for any and all information we could gather on this condition. Before all of this we had not really heard of Trisomy 18 and when we told others what Michael had the announcement was met with puzzled looks followed by the question, “What is that?”
We realized how relatively unaware the general public is about this chromosomal disorder that is the second most common, behind Downs Syndrome(Trisomy 21).
After a lot of searching and prayer we have decided to start this site to help raise awareness of T18 and T13 and the families that have been touched by it. As one of my friends, Michael Hennessey (World record holder for most Ironman triathlons completed in a year, 15) says, “We are not trying to fix these kids, we just want to love them and their families.”
