March is Trisomy Awareness Month!

Rebekah started out Trisomy Awareness Month with two accomplishments! First, she is one of the featured Toby's Kids on the Passy-Muir company website. Rebekah wears a Passy-Muir Speaking Valve which allows her to talk despite having a trach. She also learned something new and very special. When told, "Give me a kiss!", she will now turn her head toward you and give you a nice, slobbery kiss! Every now and then, she makes really funny fish lips trying, but it is mostly a closed lip peck right now. She will even kiss her stuffed animals!! Her nurse, Becky, got teary-eyed when I showed her.

Rebekah turning her head to give mommy a kiss!

Rebekah and I have have kicked off Trisomy Awareness month by trying to do as much local awareness as possible. My boys' school had Disability Awareness Week this week for the 3rd graders. I took Rebekah into the school and was able to share her story and some information about children with disabilities. Her brother, Jeremiah, was so proud when I brought her around to his classroom! He loved showing off her g-tube and trach, and wanted to talk about the SOFT conference we went to last summer in Chicago and how we will be going to St. Louis this summer for it. (SOFT is Support Organization For Trisomy)

Then this afternoon, we had the privilege of having 6 MUSC (Medical University of South Carolina) 3rd year med students/interns come to our house and meet Rebekah and her friend, Maddy, who has a 2q microdeletion. What a WONDERFUL opportunity to work with future doctors so that they can have more compassion and empathy for disabled patients! This is part of a program to give these future doctors some exposure to the disabled community, since most of their exposure will be with sick patients in a 'hostile' environment. I think these poor students got a little more education than they expected. Thanks to the Budd Zoo, they learned how loud and chaotic a house of 5 kids can be!

Maddy (2q microdeletion) and her Mommy, Alisa

Some of the future doctors!

Two more future doctors (holding Rebekah) in front of Jeremiah and Michelle from our local Family Connections group.  A big thanks to Michelle for getting us signed up for this program! We hope to see many more doctors!

This weekend, I will be hard at work on a trisomy awareness video for the nonprofits I am involved in: Hope for Trisomy 18 and 13 and Trisomy Advocacy Group. I am so excited because our video will have examples of trisomy kids from 2 to 22! Woo hoo!  Make sure you subscribe to our you tube channel so you don't miss it! 

Monday, I am attending a SC Department of Disability and Special Needs (DDSN) Stakeholder Meeting. Even though this isn't directly trisomy-related, it is directly related to services we receive from the state and I go representing Rebekah, and all children like her.

Next Wednesday, Rebekah and I are off to FL to celebrate a Trisomy Awareness gathering of friends, several of whom will be at Disney all week thanks to Make a Wish Foundation. We are praying we will get some media coverage for our event!  I am so excited to spend just a few days hanging out with Rebekah's trisomy friends!

Later this month, I will be working hard on a presentation application to the TASH Annual Conference. TASH is an international leader in disability advocacy fighting for human rights and inclusion for people with significant disabilities and support needs - those more vulnerable to segregation, abuse, neglect, and institutionalization.  If the project gets chosen, Rebekah and I will get a trip to CA in November!

Needless to say, I will be taking a mental break in April, and probably sleeping for a week!

To learn about all kinds of helpful resources for special needs children, and to see some of the beautiful children that span across all trisomies, please visit our facebook page: https://www.facebook.com/TrisomyAdvocacyGroup

Trisomy 18 Children (and Parents) Can Experience Joy

The following opinion editorial was written by Michael Budd (father to Rebekah) and run in the Greenville News on 2/13/12.

Rick Santorum’s run for the Republican presidential nomination has brought to light a topic that is near and dear to me and my family. Like Sen. Santorum, my daughter has the genetic condition of Trisomy 18, or Edward’s Syndrome.

This condition was prenatally diagnosed, but my wife and I chose to continue the pregnancy despite the gloomy prognosis. Ninety percent of Trisomy 18 children die at or before their birth, and of those that survive, 90 percent die in their first year of life. We chose to cherish whatever life God gave to us.

I recognize that many don’t understand this decision and that there are many misconceptions about these precious children.

Much has been written recently about Trisomy 18, but the most profound statement in an online ABC News article said that survival “depends on the severity of symptoms and the quality of care.” The first part, “severity of symptoms,” is a wide range and something that cannot be changed.

Most of these children are lost despite the hopes and prayers of their parents. However, the “quality of care” is our choice. If the child survives their birth, we have to choose the amount of medical intervention we will afford this medically fragile child.

I have heard it said that Rick Santorum’s daughter, Bella, has received care because he is wealthy and privileged. This is not my experience. My family is middle class, we have private insurance through my employer, and my daughter, Rebekah, has received similar care that Bella has received. Additionally, in South Carolina, Rebekah is eligible for a type of Medicaid called TEFRA, which covers more services than our private insurance.

The truth of the matter is that Bella receives services because Rick and Karen Santorum are willing to fight for them. I did say fight. You see, Trisomy 18 children are categorized as “incompatible with life” or “a lethal diagnosis,” which many doctors and hospitals take as a license to deny care. This story is played out everyday across the United States and the world.

Like the Santorums, we are blessed to live in a community that has hospital systems and many doctors that have helped us address Rebekah’s medical concerns. Their care and interventions have enabled us to enjoy over two- and half-years of joyful life so far.

It is true that a child with Trisomy 18 faces difficult times and their family has to make hard choices about their care, but aren’t all of our lives difficult at times? Many people have told me how Rebekah’s demeanor and activities change when she hears my voice coming into the room. Not only does she recognize me, she is excited to know I am coming to see her!

If you could see Rebekah and Bella (and the numerous other Trisomy children across this country) at home with their siblings, friends (yes, friends) and favorite toys, you would see the true essence of happiness and peace. The joy Rebekah takes from life encourages us about the decisions we have made on her behalf.

My heart breaks every time I hear about a child diagnosed with Trisomy 18, because I know parents will have to make difficult choices in what are often hostile environments. Unless you have faced these choices, you have no idea what they feel like.

At these moments, it doesn’t matter what you believe morally, ethically, politically, philosophically or theologically. You must make a life or death decision. In a few hours, days, or weeks, you will have to make it again. Ultimately, you have to live with whatever choices you made.

For my wife and me, our first choice was to “cherish every kick and every moment” we had with our daughter. Almost three years later I thank God every day for how he has blessed us.

Michael Budd lives in Simpsonville with his wife,
Susan, and their five children.
For more information about Rebekah go to
http://buddzoo.blogspot.com.
Help is available at www.trisomyhelp.org.

Through My Eyes...

Through My Eyes...

If only you could see my little girl through my eyes,

 the way I see her...

She is so beautiful!

She is so happy!

She is so full of unconditional love!

She often looks at the ceiling and her eyes follow things I cannot see.

Then she giggles and darts her eyes in another direction,

as if to see the angels that are hidden from my view.

Her heart is so pure, she knows only love.

Oh, how it breaks my heart to hear the bold, ugly comments about 'her'

and her trisomy brothers and sisters.

"She would be better off dead."

"She doesn't know the difference between her father and the door."

"Kill them all!"

"How can you bring a child into the world knowing they will live a life of pain?"

"She 'suffers' from trisomy 18."

"You must've done something bad to have a child like that."

Oh, the terrible things said about these children from uneducated and heartless minds.

My daughter does not 'suffer' from trisomy 18.

Our world suffers from inhumanity and self-centeredness.

To love my daughter and those like her is to truly know and understand agape love.

SIGH...

"If only you could see the world through my eyes," whispers a voice to me.

"A world were love knows no bounds,

a world where everyone is beautiful,

a world where everyone has a purpose."

Was that her voice speaking to me?

Or that of Jesus, gently nudging me to love and forgive as he has.

I have been given a most precious gift...

the gift of life, the gift of love.

I wish you, too, could experience this.

I wish you could see things through my eyes.

Getting 'PLASTERED'

Rebekah has scoliosis, and it seems to be getting progressively worse.  We go to a Shriners Hospital to follow its progression and they have been reluctant to do many interventions. But each x-ray has been getting steadily worse, so they agreed it was time to do something to try to slow down the progression. The danger of scoliosis, especially an 'S' curve scoliosis, is that it will eventually crowd the heart and one lung restricting growth and obviously causing problems. We are a long way from that point, but it seems evident that we will eventually get there. The doctor would like to slow down the growth as much as possible so that we can hold off on any kind of surgery until she is a teenager. Once you fuse the spine, put rods in place, or any of the other surgical methods for correcting bad scoliosis, you stunt growth so that the patient can really no longer grow. While there are some nonsurgical casting procedures, they are not considered as effective for 'S' curve scoliosis as for 'C' curve scoliosis, especially in patients with a chromosome disorder.

There are many types of scoliosis braces. The original plan was to get a hard shell TLSO (Thoraco-Lumbo-Sacral-Orthosis brace, or also known as a Boston brace). But because the corrective pressure put on her during the casting did not result in a >50% improvement, we went with a TLSO that has more padding and less hard plastic and will be a little more breathable. The doctor is hoping it will encourage us to use it more often and therefore be more effective in the long term. But we have to try to balance maintaining her spinal curve with improving her development. In any case, the braces hinder her development by limiting her movement and adding a lot of weight to her already weak muscles.

Here is a picture story of the process of getting fitted for a TLSO, which includes being plastered in a cast.

9/21/11 S Curve Measurements: Top - 27 degrees, Bottom - 29 degrees
12/14/11 S Curve Measurements: Top - 33 degrees, Bottom - 30 degrees

Getting ready for the casting. First a tight body shirt is placed on the patient. The shirt has no obvious seams to cause irritation and the same kind of shirt is worn under the TLSO to help prevent breakdown of the skin.

Rebekah was placed on a crazy contraption and balanced on about a 2 inch wide 'sling'. Then warm, wet pieces of plaster were wrapped around her body from below the arm pits to right below the hip bones. Then they were smoothed down. Rebekah seemed in a trance and loved the attention, proprioceptive input, and the warmth. They stated she was, by far, the easiest 2 year old they had done!

Then her feet are put in straps at one end and her head put into a sling of sorts. They applied pressure to 3 different points in order to compensate for and correct the scoliosis. Then they 'crank' the contraption and stretch her out like the medieval 'rack' used in torture chambers. (It didn't really hurt her, just gave her a nice stretch. She actually didn't complain during the whole process; it probably felt really good on her back.) She was kept in this position for about 10 minutes until the plaster was hardened.

Once hardened, she was taken out and carried to x-ray to see how well the correction worked.

Here she is getting the x-ray done. The pins show the sections where the correction pressure points were placed.

Here is the x-ray with the cast. From my untrained eye, it seemed tons better than the previous x-rays. But it didn't improve her scoliosis the desired 50% or better goal. The S curve was now about 117 degrees on the top and 21 degrees on the bottom. The bottom curve was much harder to correct and clearly is bone growth, not weak muscle as previously thought by the doctors during earlier x-rays. This means we will not be able to correct the curve, but we will try to slow down the progression so that it does not get real bad before puberty, the preferred time for any surgical interventions since growth of the spine can be stunted once surgery is performed. Even the growing rods only have a certain amount of growth capability built into them. All of this was disappointing to hear. But we are committed to doing what we can to improve Rebekah's condition without greatly hindering her developmental growth opportunities. The trick is to figure out how much use of the brace is necessary to slow the growth down while we continue to see developmental gains and encourage Rebekah to sit on her own and move and roll around. A brace would certainly limit her movement and exploration at this critical stage of her development.

With the x-rays over, the plaster cast can now be removed. A little hand saw is used and it is cut in a straight line that was drawn on her during the casting process. Right under the line is a heavy weight strip of material that prevents the saw from going into her skin.

Then a tool is used to separate the cast so we can pull her out. The cast needs to remain intact so it can be used to mold the new TLSO.

A few weeks later the base TLSO was completed. I forgot my camera the day of the fitting, but basically they put the tight white undershirt on like in the picture. The shell was placed on Rebekah and cut to fit her under the arms, far enough below the trach not to obstruct it, and high enough at the hips to allow her to sit in the TLSO. Then it was drilled to add airholes and the straps were added to it.

Here is the front of the completed TLSO. The round hole is cut for her g-tube so that the shell doesn't need to be removed for each feeding. The 3 straps are pulled so that the TLSO is tight enough to 'not move', but not so tight that it hinders breathing. We undo the lower straps during feeding just so we don't have so much pressure on her little tummy that it causes her to vomit.

The back goes all the way down past the sacram, but does not go too far to hinder sitting. The white sections with the holes are in areas where there are no pressure points. This adds a little more air circulation and comfort to the TLSO. However, if the casting had improved her scoliosis more, they would have stayed with a hard shell brace that would ultimately be more effective (but less comfortable). The lack of improvement is because the scoliosis is based more on hard bone curvature versus a muscular cause to the curve which is more 'correctable' over time.

So for anyone facing a casting scenario for your child's scoliosis, this should give you an idea of what you might expect. Although the process was time-consuming, it wasn't difficult on Rebekah. She rather enjoyed the warmth and confinement of the plaster session. She didn't care for the brace the first week or two and seemed to hold her breath. But we never really got much out of her than a little whining. She is now doing well in it, and can wear it pretty much all the time with no issues with her skin. We take it off for a few hours here and there for therapy and play time. It is supposed to be worn like 23 hours per day, but we have to balance physical development with reducing the curve progression. We will have to go through the process probably about once every 4 months or so, depending on her rate of growth. If her curve remains stable from the last uncasted x-ray statistics, then we will know we have a good plan in place.

Karen for First Lady!

Michael and I made plans to attend our first ever Republican Party even - a meet and greet dinner with Senator Santorum at a local restaurant. The thought came to me about an hour before we had to leave that I should give him a note with a picture of us with him from last year and an invitation to his wife to join our online community. Here's my short note. I included several of Rebekah's info cards and a picture of our family.

Dear Mr. Santorum,

We had the pleasure of meeting you at the SOFT Conference last summer in Chicago!

A group of us have started a nonprofit called Trisomy Advocacy Group – a group meant to educate and help parents advocate for their trisomy 18, 13, and any other trisomies not currently represented by a national organization. Like you, we have had our share of disappointing encounters with the medical community, despite our full trisomy 18 daughter being 32 months old. We would love to talk to Karen or you about it! We would also love to give Karen some trisomy support. We have a great moms group on facebook, and she could even join under a different name if she didn’t want the attention. I cannot tell you how much we have learned from our moms group and how it has helped us to be better advocates. God bless! We will be voting for you!

Michael and Susan Budd

I held a folded paper in my hand waiting for the opportunity to slip it into his hand when I had my chance to meet him as he made his way through the room greeting everyone there. We arrived 40 minutes before it was scheduled to start - good thing as he started speaking only a few minutes later. I would have to wait until after his speech to get my moment.

As I struggled admist the crowd to see Santorum as he spoke, I can honestly say I felt an amazing presence in the room. I believe this man to be a man of character, speaking words of truth - someone who can bring integrity back to the White House. There is no candidate that I agree with 100% on every issue, but I would take someone who I agree with on 90% of the topics and who I know would be true to their word. 

My excitement suddenly grew though!  I didn't expect to see his wife, Karen, standing next to him. For some unexplained reason, my eyes suddenly welled up with tears as I felt an inexplicable bond with this woman. The letter I wrote was really intended for Karen, but I didn't dream I would see her at this event since Rick was making his grassroots tour across the Upstate area of SC and visiting location after location every few hours. I was so excited! I could now give the letter to Karen directly!

The speech finished and I continued to push my way through the crowd waiting for my opportunity to get to the Senator. But as I got closer, I saw Karen was no longer by his side! My heart dropped. I asked a ady who had been standing there if she knew where Karen went. She said she heard her saying something about the bathroom.

So I snuck off to the bathroom to 'corner' her despite Michael's urgings to give her some privacy. Besides her, that bathroom was empty! I patiently waited until she came out of the bathroom stall and washed her hands, then I made my move! I quickly introduced myself as a fellow trisomy 18 mom, my heart welling with a pride that only another trisomy mom would understand. I gave her the letter and quickly said a few words about our Trisomy Advocacy Group, Trisomy 18 Mommies group, and my family.

Karen started asking me questions and took a glance at the letter and my info card with Rebekah's picture. She recognized Rebekah! She said, "You have a blog, don't you? It's beautiful, I loved it!" My heart burst with pride and I suddenly had the urge to run home and add to my long-neglected blog! My writer's block had been broken!  We chatted some more about advocacy and these words flowed from her mouth, "I have such a passion for this! [referring to trisomy 18 advocacy] I am so tired of doctors telling us our children are 'incompatible with life'."

She asked me about Rebekah's story. How did it start? What did the doctors do/say? What did we do with Rebekah? We chatted for long enough in the bathroom that someone from their security group finally knocked on the door, gave me an evil eye, and asked if she was okay. Before I could say a word, she said everything was fine. She gave me a hug and we left the bathroom. I paused her so Michael could snap a picture of us together. Then her son, Dan, gently told his mother they had to move on to the next location and were getting ready to leave. Michael just looked at me disbelieving I actually DID have the guts to stop her in the bathroom after all!

Let me tell you, I love this woman! She would be such a great First Lady for our country. She is as down-to-earth as Rick, not afraid to shake hands with those around her, and has such a kind heart. I am most honored to meet her, even though I thought it meant I missed my opportunity to speak with her husband. But she had my letter! So I knew he would at least get to see the picture from last summer of him with Rebekah, Michael, and I.

But my evening wasn't finished! I made my way across the room to our table, and I squeezed next to Senator Santorum as he was heading out a side exit door. I quickly stuck out my hand, and reminded him that we had met at the SOFT conference in Chicago last July. He gave me a hug, and asked about our daughter. He, too, gets my vote for the White House!

Quality of Life

Before Rebekah was born, we were told many things about what to expect because of her diagnosis of Trisomy 18. None of them were positive. It went beyond describing her as 'incompatible with life'. At one point when asking how far should we go to help her, we were told to save our money because we have four boys to send to college. When requesting a caesarian section in case of distress, we were told no, that it was too dangerous to me (the mother) and that trying to help a child like Rebekah was not why that person became a doctor. When exploring how best to address Rebekah's early blue spells and apnea and looking at the option of a tracheostomy, we were told that we would regret our decision a year down the road. When asked for an explanation of Rebekah's brain MRI, we were told that Rebekah is noncommunicative and may develop a little bit, but will then start regressing and basically be a vegetable, so we need to stop doing to her and start thinking about how to just make her comfortable.

All of these comments and opinions were based on a false assumption... the assumption that Rebekah's 'quality of life' would be or is poor and that her existence negatively affects our family.

What is 'quality of life'?

• a term used to evaulate the general well-being of individuals (subjective well-being)
• what makes life worth living
• the extent to which people's 'happiness requirements' are met

I like one definition from grdc.org: Quality of Life is the degree to which a person enjoys the important possibilities of his/her life. Possibilities result from the opportunities and limitations each person has in his/her life and reflect the interaction of personal and environmental factors. Enjoyment has two components: the experience of satisfaction and the possession or achievement of some characteristic, as illustrated by the expression: "She enjoys good health." Three major life domains are identified: Being, Belonging, and Becoming.

Rebekah had an appt last week with her Developmental Pediatrician. His name is Dr. Desmond Kelly and he is such a compassionate and understanding doctor.  We updated him on all the new things Rebekah has started doing in the last 6 months.

He had this to say about Rebekah:

• She seems to be genuinely happy.
• She explores her environment.
• She entertains herself.
• She has self-esteem and looks pleased when she accomplishes a task.
• Her highest area of development is her social skills.
• She recognizes and reacts positively to her family.

I said to him, "Wouldn't that constitute a good 'quality of life'?"

His response was agreement. "She obviously loves her family and brings you great joy. That is what it is all about."

How well stated! If only more doctors would look at 'quality of life' with the same view! And if you go back to the definitions of quality of life - I think Rebekah has mastered all the areas from her view: well-being, happiness, being, belonging, becoming, loving. She is, to us, all that God meant her to be. And I would say her quality of life is better than most people in the world. Even more importantly, she makes OUR quality of life better too.

Disabled Children Have So Much To Teach Us

The irony of pro-life/pro-choice in politics ends up in this generalization -

• The Republicans are predominantly pro-life, but do support death penalty and don't support the programs that would be necessary to help those born with conditions requiring long-term care (in other words - people that won't be productive tax-paying citizens). So let's save all the pre-term and unwanted babies, but do nothing to help them...
• The democrats are pro-abortion (yeah, yeah you can say pro-choice if you want to), but don't support death penalty and do support programs that help those born with conditions requiring long-term care and even support programs for a percentage of people out there that just don't want to be 'productive members of society'.

So one keeps babies alive but doesn't support a lot of funding for helping them, one supports killing babies, but entitles everyone to services.  Yes, this is a generalization! I obviously don't think it's quite so black and white, but I find it ironic none the less!
There is one republican politian (Rick Santorum) who 'gets' the value of all lives. The Santorums have dealt with infant loss of their son Gabriel (Letters to Gabriel) and currently have a 3 year old trisomy 18 girl named Bella. 

Here is a recent article on Santorum:  Disabled Children Have So Much To Teach Us

At first, Santorum was emotionally detached from his disabled daughter but, when she faced her own battle for life, he suddenly realized, “This child…can do nothing but love me.”
Santorum observed, “That’s me with the (Heavenly) Father—I am so profoundly disabled in His eyes.”

The picture of Senator Santorum posing with Chloe Kondrich (a Down's Syndrome child - trisomy 21) says more than words ever could. His broad grin shows that he has come to realize the worth of every human life, no matter what challenges that life may face. (from Disabled Children Have So Much To Teach Us)

I am so grateful for experiencing the joy of having Rebekah. And, although I may not agree with all of his politics, I do believe that he would compassionately protect rights and services for children like Rebekah (even though she will most likely never be a productive member of society). I think he will be compassionate toward all people, because he has come to realize what all of us with special needs children realize...that each life is valuable. And he is so right in observing that, in God's eyes, we are all profoundly disabled.

Tribute to Caleb (3/20/09 - 8/29/11)

As little as 2-3 years ago, there were very few resources online to help families faced with the diagnosis of trisomy 18/13. There were even fewer active resources that helped CONNECT families of  LIVING children. While I was pregnant with a prenatal diagnosis of trisomy 18, I needed that hope and I needed to talk to 'experienced' trisomy families so I could educate and prepare myself.  It was so hard to find living kids. So I started a group called Trisomy 18 Mommies* on facebook to connect all of us, no matter where we were in the trisomy journey, and suddenly I started finding trisomy families, many with living kids that provided me with so much hope! Online, the trisomy families share fears, milestones, illnesses, frustrations, tears, joys, friendship, knowledge, and grief. We share things our friends and families just don't understand, because they are not on the same Journey.

I have a very special bond with one family in particular - the Adamyks. Jeannette and I found each other on facebook as we were both beginning this trisomy journey. Jeannette and I quickly started sharing more than just the trisomy journey, we started sharing life together.  The Adamyk's son, Caleb, was born a month before Rebekah and also with full trisomy 18. Jeannette and I may have developed a strong bond, but I always felt like Rebekah and Caleb were kindred spirits too. Caleb is the 'groom' in Rebekah's 'wedding' pictures, and they look a lot alike and share many mannerisms.  

Caleb went to be with Jesus on 8/29/11.  I have to be honest, I have had a very rough time this past month.  I haven't been interested in my normal activities, it is a struggle to get through the days, and I have been having bad dreams and anxiety.  I have wanted so much to blog about Caleb's funeral and my feelings through this grieving process, yet I still cannot put it into comprensible words.   I know my pain isn't anywhere near that of Jeannette and her family.  Yet my pain is enough that it has been debilitating.  Oh how I hate that one of my best friends has to go through this part of the 'journey'... and I hate that any of us have to even think about facing it one day.  But through our friendship, and by sharing this journey with Jeannette, I have seen the depth of her love, the depth of her commitment, the extent to which she would go to help her son, and how to gracefully and lovingly one can face the worse nightmare of any mother - the death of your child.  The pain and suffering doesn't negate the joy and blessing of having a miracle child that defies the odds.  It doesn't make us regret choosing life.

Caleb's legacy and what he means to the trisomy community:

• Caleb had the most beautiful smile that melts everyone's heart. He showed that having a special child could be full of happy moments.
• He gave us hope to not give up on our children, but to fight for them.
• Caleb became an encouragement to other families faced with the same diagnosis, and the Adamyks showed us how to be advocates for our children.
• Caleb proved that life is more than what you accomplish by worldly standards. Trisomy 18 children are worth fighting for. Life isn't about striving for perfection or success, but about loving and living, and enjoying each day.
• Caleb helped bring people closer to God and gave us a glimpse of what unconditional love means - suffering without complaint while loving those around us, just as Jesus did.

Before Caleb went to the hospital in what would be his last days, Steven Adamyk twirled him around outside in the rain, just enjoying a special moment with his special son. This beautiful moment reminds us that "Life isn't about waiting for the storm to pass, it's about dancing in the rain."

Jer 29:11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Although it is hard for me to see and accept this now, I know in my heart its true and I am praying daily for the Adamyks and for all my trisomy friends that have lost their child.

Caleb lived in Ocala, FL. Ocala Star Banner has been following Caleb's story since birth. Here are the links to some of the beautiful pieces done on him:

• 3/19/11: Caleb turning 2 amid support for Edwards syndrome kids
• 8/30/11: After celebrating his 29th month of life, Caleb dies at area hospital
• 9/7/11: Boy's spirit, love honored during celebration of life
• 10/3/11: Caleb Adamyk's Story
• Ocala.com photo gallery from all of Caleb's articles
• A complete list of his articles can be found here

Michael Robinson (a family friend of the Adamyk's) made this video: Celebrate Everything - A Tribute to Caleb.

Caleb's Celebration of Life Service:



Caleb Adamyk's Story:

Come To Jesus by Chris Rice

Weak and wounded sinner
Lost and left to die
O, raise your head, for love is passing by
Come to Jesus
Come to Jesus
Come to Jesus and live!

Now your burden's lifted
And carried far away
And precious blood has washed away the stain, so
Sing to Jesus
Sing to Jesus
Sing to Jesus and live!

And like a newborn baby
Don't be afraid to crawl
And remember when you walk
Sometimes we fall...so
Fall on Jesus
Fall on Jesus
Fall on Jesus and live!

Sometimes the way is lonely
And steep and filled with pain
So if your sky is dark and pours the rain, then
Cry to Jesus
Cry to Jesus
Cry to Jesus and live!

O, and when the love spills over
And music fills the night
And when you can't contain your joy inside, then
Dance for Jesus
Dance for Jesus
Dance for Jesus and live!

And with your final heartbeat
Kiss the world goodbye
Then go in peace, and laugh on Glory's side, and
Fly to Jesus
Fly to Jesus
Fly to Jesus and live!

Rest in Peace, Sweet Caleb. We love and miss you so much!!

*Trisomy 18 Mommies is one of many online resources available to families wherever they are in the trisomy journey. We currently have about 540 members at all different points in 'the journey'. Contrary to the name, the group is also for dads, family members, etc and encompasses families facing trisomy 18, 13 or any similar genetic disorder considered 'incompatible with life'. However, Facebook will not let us change the group name to better reflect the composition of the group. :-)  If you are facing a diagnosis of trisomy, already have a trisomy child, or have lost a trisomy child, we offer a community of compassionate members that 'get it'. Feel free to join us.

A Birth Healing Blessing

Matthew 5:4   Blessed are those who mourn, for they will be comforted.

I am on a list serv group for trisomy medical issues. You can find it here and join one of the trisomy list serv communities. I mostly just read the posts and glean as much knowledge as I can from seasoned families. Every now and then something special catches my eye and today was one of those days.

I have been very sad the last few weeks at the loss a good friend's trisomy 18 son ( a dedication blog to be posted very soon!). This event happened as about 10 other trisomy children also passed within a few weeks. There are several children in the hospital now, fighting for their lives.

Although the following poem was written specifically for late-term miscarriage, stillbirth, or neonatal death, I am dedicating this to all my friends who have lost children. It is beautiful.

I love you, dear friends...

A Birth Healing Blessing*

Blessed sister, beautiful one

with broken wings.

Your journey is a difficult one

that no mother should have to endure.

Your path is steep, rocky and slippery

and your tender heart is in need of gentle healing.

Breathe deeply and know that you are loved.

You are not alone,

though at times, you will feel like a

desolate island of grief

untouchable

distant.

Close your eyes.

Seek the wisdom of women who have walked this well-worn

path before you, before, and before, and before you yourself were born.

These beautiful ones

with eyes like yours

have shared your pain, and

weathered the storms of loss.

You are not alone (breathe in)

You will go on (breathe out)

Your wings will mend (breathe in)

You are loved (breathe out)

~ Mary Burgess

Author, *Mending Invisible Wings*, a healing journal for

mothers following the loss of their baby through late-term miscarriage,

stillbirth, or neonatal death.

Where Miracles Happen

While Rebekah was in the hospital for a month in June, we got to participate in a special being filmed about our local Greenville Children's Hospital. The WYFF 4 one hour special is called 'Where Miracles Happen'. It is now posted on the news station's website in seven parts, Rebekah is in Part 6. Be sure to check out her starring role: Where Miracles Happen: Part VI - Video - WYFF Greenville! We will be selling foot print autographs for anyone interested! ;-)

Here are some other pictures from that day as each of the dogs visited Rebekah. She was so funny because she wouldn't pet any of them with her hands, but she was most definitely petting them with her feet! As each dog visited, she got more bold with her foot moves.  I love my sweet little girl...

Rebekah is thinking about reaching out with her left hand.
She is very defensive of her hands and doesn't like to use them a lot.

She decided to switch to other body parts because she didn't want to stretch out those arms. Here she is deliberately useing her knee to pet a dog.

Because Rebekah was obviously trying to use her feet over her hands to interact with the dogs, I removed her shoes and socks so she could get direct contact.  Now she is really getting into it and extending her foot out the whole way!

Here's Boomer from the video link. Rebekah was rubbing him with her foot.

This dog was so funny. He came in and licked her face.
She thought it was so funny she decided to stick her foot in the dog's mouth for a lick.