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.

My Road To Advocacy...

I was selected this summer to participate in a federally-funded program called 'Partners in Policy Making' which is a leadership training program that helps family members learn the history of disibility law and how to become an effective advocate. Here in South Carolina, it is run through a group called Pro Parents, and they select about 15-20 people a year to participate. I get to travel to our state capital for two day training sessions that will occur over five months, learn about the law-making process at local, state and federal levels, meet speakers who are experts in topics essential to advocacy, and hopefully learn how to effectively advocate so I can better help Rebekah and others like her!   Anyone can petition to participate in the program, and if it is not available in your state as a hands-on learning process, there are free online tutorials at the Partners in Policy Making website that cover the technical information learned during the training.

I FINALLY got around to creating and ordering my own personal advocacy cards in August! It has only taken me a year of talking about it to finally get it done. The hard part was coming up with exactly what I want the cards to convey in such a small space. Because my passion is for advocating for children with trisomy 18, 13 and similar conditions, I chose several organizations that support the trisomy journey - especially those in the journey with living children. I obviously couldn't include every organization, but I can say that these organizations make a difference in the lives of families that choose life for their trisomy kids. Of the amount of funds that goes into these organizations, almost all of it goes right back out to supporting families - you can see the fruits of their labor. The list of people they have helped is long, and their leadership is full of integrity. I have been personally helped by all of them -

• Trisomy Advocacy Group helps give a voice to those who have none, and helps connect new parents to parents willing to support and help them face doctors and hospitals not trisomy frirendly.
• Noah's Never Ending Rainbow helps families with living children and bereaved parents who need a little financial help. They helped fund 14 families attending the SOFT conference this past summer - we were one of them.
• Support Organization for Trisomy (SOFT - trisomy.org) provides a way for trisomy families to connect - no matter where they are in the journey. They put out quarterly publications with lots of useful medical information, and have medical advisors on board that are 'experts' on trisomy kids. There is an annual conference that is incredible - for both those with living children, and those who have lost children. It truly is a wonderful support organization.
• Hope for Trisomy offers comforting Gemma's Bears and Payton's bears to trisomy families, funds research projects, and helps advocate on behalf of these children.
• There is another organization that I wish I would've added - Prenatal Partners for Life. They have helped countless friends of mine, and the founder recently lost her full trisomy 18 son. They support families with adverse prenatal diagnosis that choose to carry to term.

This is the front of the card...

...and this is the back side.

There are many other organizations that support the trisomy community, I listed them in this blog entry months ago.  But the ones that made it to my cards are the ones that have supported me most in my journey.

I would really love to be able to go to medical conferences, universities, and any place else where I can show off Rebekah and her trisomy friends and explain that life-limiting does not mean incompatible with life, nor does it mean there is no quality of life. These children are special and have many things to teach us. Rebekah and I are looking forward to our advocacy opportunities and how we can make a difference for trisomy 18 awareness. I start my Partners in Policy Making classes in October - and I can't wait!

An Unbelievable Appointment...

I had a really bad day today. Today I clearly saw (for the umpteenth time) the gap between a surgeon's scientific view of life and the compassion I want and crave in Rebekah's doctors.

I have been fighting with the neurosurgeon and the orthodics company about doing another 'cranial remolding orthosis' (molding helmet) for Rebekah's progressively flattening head ('severe brachycephaly with flattening'). Most places won't make them past a child's 18th month, and apparently neurosurgeons know everything because I was told it would do her no good (even though her growth is delayed and her fontanels are not all closed yet). In fact, I was told that for him to say a helmet would help her head would be as truthful as for his to say he was pregnant.  Yet I have found online parents that have had helmets for their trisomy two year olds.

I also asked the doctor to review Rebekah's MRI from last summer. I never saw a neurologist to actually get a complete review of the results - only got the written results and discussed them briefly with several of her doctors. The neurosurgeon went through an explanation of how the MRI works and what we were looking at. Basically, Rebekah's whole brain is underdeveloped and has abnormalities. For those who like the medical terminology - she has white matter leucomalacia, delayed myelination patterns, and a thin corpus collosum. She has a lot of extra fluid filling in the gaps where there should be more 'substance' and white matter. The white matter is what is needed to create the neuropathways and help the brain to function normally. You loose white matter over time and this decreases brain function.  There are kids born with only a brain stem and no brain who actually can live - they will eat, sleep, cry and maintain the basic of infant instincts/actions all without having a 'brain' or being able to develop. (Wasn't sure why he brought this up...but that is coming soon!)

So what does this mean for Rebekah? (Per the neurosurgeon...) Increased risk of seizure activity getting progressively worse, global developmental delays that we will be able to make some progress on but, because her brain is 'atrophied', we will get to a point where she will 'regress' and no longer develop. There is 'nothing' I can do to help develop neuropathways or encourage development. Or so says the doctor! (So why have studies showed that the first three years of life are critical for encouraging neuropathway development and early intervention is a national program?!)

I have to keep telling myself that she is the same as she was yesterday and this 'diagnosis' doesn't mean anything. God made the brain so complex and amazing that there is no one on this earth that truly understands everything about it. She has survived two extremely life threatening situations all by the grace of God. He can surely continue to develop her despite what this doctor thinks.

Well, the situation kind of went downhill from there (believe it or not) and I started to understand why he was telling me about the 'brain-stem-only' babies. Although he didn't state this is plain words, I quickly realized that he basically views Rebekah as someone that is nothing more than a basic blob of instincts. In fact, I was told that we need to "plan" the "future care" of Rebekah to make sure that we are not doing "to her" instead of doing "for her". (In other words, interventions and procedures at some point are going 'too far'.)  Even if we have people that said they would take her should something happen to us, they really won't want to once they find out everything that this would require and how 'hard' it is to care for a child like Rebekah. We need to draw a line and decide now how far we would go in her care or we will look back one day and ask ourselves, 'how in the world did we get here? We regret our decisions!'

REALLY?!?!  How would you feel if your child's doctor told you this?

Then I get home and I actually read the 'Summary of Today's Visit' print out that I received from the office. The next to the last sentence reads, "She is nonpurposefully verbalizing, no meaningful interaction."  

I am stunned, and mad, and sad. She spent the appointment crying - not because she was nonpurposefully verbalizing!! She is getting FOUR 2 year molars in simultaneously and every morning she is not dealing with this well. I wouldn't be either! She was communicating LOUD and CLEAR to me. And as for meaningful interaction, all you need to do is look at how her eyes brighten when her brother walks into the room, or how she gets a big grin when her nurse comes to take care of her. I have plenty of phtographic proof of her ability to communicate. Just because she cannot write a medical journal article, or even use spoken words, she communicates frustration, tiredness, happiness, fear, and, most importantly, LOVE. This is NOT a brain dead child - this is a gift for us to understand and learn how to love like Jesus loves, how to have compassion like Jesus had compassion...

What happened to the compassion in the medical community that all we have become is a diagnosis or a medical chart?  I fear for my daughter's future in the hands of physicians with this view... Needless to say, we will not be returning to the neurosurgeon's office.

A Nineteen Month Reprieve Ends... (PART II)

Friday 6/3 - It is the day after surgery and Rebekah continues her pattern of sleeping. Even though I haven't seen her awake for more than a few minutes in 5 days, I still am not too worried. Her blood pressure had come down and she looks more comfortable and peaceful than she has in a long time. But today is another challenge for us...

While in the OR, many attempts were made to get a central line into Rebekah. This is necessary for two reasons. 1) She has been without nourishment for over 5 days; and 2) The infectious disease doctor wants a central line for her UTI antibiotics. Both of these things cannot be done in a regular IV because Rebekah's veins are small and prone to 'blowing'. Dumping these things into her tissues can cause another set of problems. So we had an appointment with the PICC team to put in a PICC line. The 'Peripherally Inserted Central Catheter' would go up her arm, across her chest, and down into the vena cava artery that goes into the heart. This procedure is done under anesthesia using special ultrasound equipment, and this would be the second day in a row of anesthetizing Rebekah.  The PICC team was also nervous because a central line from the groin area is typically easier to get into place than a PICC line from the arm.

Well, the doctor performing the procedure is Dr. DeVane. He and his team got the PICC line in first try! I was ecstatic and told him, "You are DeMan for DeVeins!"  That made him smile. :-)  Everyone was thrilled for this victory, and Rebekah did awesome under sedation. They said that trached kids typically need bagged during the procedure, but all she needed was a little blow by oxygen while under and she came out of it like a champ!

Rebekah - right after the PICC line procedure, still asleep from the anesthesia.

Saturday 6/4 - First day post-op that Rebekah has finally started 'waking up' and showing us those beautiful eyes and a few fleeting smiles!  She started CPT (chest percussion therapy) three times a day, which is pretty standard post-op to help keep the lungs clear. She's in love with Respiratory Therapist, Josh, and he was the recipient of her first genuine sustained smile in over a week! We also finally started her TPN (Total Parenteral Nutrition) feeds. Regular IV provides the fluids and electrolytes you need to stay hydrated, but it does not provide your body with nutrition, which is the purpose of TPN. TPN puts directly into your blood stream dextrose, amino acids, sodium, potassium, magnesium, calcium, phosphorus, and lipids (fats). Of course, dumping this all directly into your blood stream also has its own set of risks as it taxes your liver and can cause blood clots. So it contains heparin to help with clotting and daily labs are drawn to tweak the TPN 'recipe' and watch for signs of liver toxicity and nutrient imbalances. The goal is to get her off the TPN as soon as possible, but the gut has to start working first. They expect it to be 4-7 days post-op for her system to be working again (inflamation clear and motility to be restored).

Saturday was also a great day for visitors! Rebekah got to see her brothers, her home nurse, and a special friend that is a doctor, but not one of her GHS doctors. :-) This is the first day in a week we've gotten her to interact.

Rebekah with her Nurse Becky

Rebekah with her special friend, Dr. Putnam

Mommy finally getting to hold Rebekah. I had been afraid to hold her since surgery because I didn't want to hurt her tummy.

Rebekah's brother, Isaiah, giving her a big kiss. Her brothers miss her a lot!

Sunday 6/5 - Sunday started with a more fussy baby. Her stomach output doubled from yesterday and I think she is finally starting to feel the pain. Our only options for pain have been tylenol and morphine. Obviously, we don't want to use a lot of morphine since it slows motility and only works for a few hours. We were not allowed to use any motrin products because of her UTI (and possible kidney infection). But thankfully, her urine has been clean for several days, so they finally gave us the OK to use toradol (an effective motrin product that comes in IV form). We can only use this for a short period due to liver toxicity, but it did the trick and seemed to get her over the pain hurdle!
Today we've had our usual bloodwork, and abdominal and chest x-rays. Chest is clear and ab x-rays still show barium just sitting in her system going nowhere. No poop or evidence of bowels 'waking up'. We are pretty much in 'wait' mode...

Monday 6/6 - More waiting... waiting for her bowel to wake up, waiting for her to poop, waiting for her incision to heal... Daily blood work leads to a little tweaking of TPN feeds. We did have a first very small bowel movement, but no real good bowel sounds, so that is the extent of today's excitement.  I put a call out to my friends to sit with Rebekah on Wednesday this week so I can spend a day with my parents. They have to leave on Saturday. I was overwhelmed by the response of volunteers!  Right now, we are in a good spot, and the calm before the storm...

Rebekah's tummy must be feeling better because she was pulling her legs up and kicking away!

Dear Lord, Thank you for making me feel better. Now please help me to poop today! Amen

CAMP GHS -
Here is my story to tell for this part of our 'Camp GHS' (Greenville Hospital System) stay -
The one thing that makes me very sad about being in the hospital is the fact that we are missing our one true summer family vacation that we had scheduled a year ago. It is to a place called Camp New Hope near Boone, NC. It is for children with life-threatening disorders and their families. We went last year and had so much fun! It is a great time of respite because they fully stock your kitchen for you and pretty much take care of everything. We have use of a Kubota to explore the 160+ acres of mountain trails, there are canoes, tubes and fishing poles for water fun, and all kinds of activities to keep us occupied. We really needed this respite time as a family.

One of the days Rebekah was still out of it, we had a nurse that was pretty hands off. She pretty much told me the the diapers and general needs were my job. I chatted with her a little bit and was explaining how we had to cancel our vacation to Camp New Hope. She asked me what Rebekah would even do there (that she couldn't do at home, I assumed). And she later asked my husband if she 'does anything'. I feel really sorry that she is a pediatric nurse and she doesn't have the compassion or understanding to take care of special kids without insulting their families. I guarantee that Rebekah can do plenty, and she steals the heart of all who meet her! But even if she DIDN'T, that is not really relevant to the care she should receive.

That coupled with my sadness at missing Camp New Hope had me really bummed. But I really started thinking about the timing of events and realized that God is watching out for us always! Had this all occurred when we were in the middle of the NC mountains, I probably would've tried to treat her longer at 'home' before taking her to an ER. And I am pretty sure there is not a children's hospital anywhere near the camp. So we probably would've ended up at a general hospital with no peds focus. If we managed to get to a children's hospital, it probably would have been out of state and with doctors who don't know anything about Rebekah other than "she has trisomy 18".  It really could've been a bad situation, and just the logistics of how we would manage the kids boggles me. But instead, we had a week where grandparents were able to come help us, she stayed local with doctors who already know how amazing she is, and our life wasn't thrown upside down by being out-of-state. Praise God for this stay at Camp GHS! It may not be where I want to be, but I know He has His hands on the situation.

Blessings and the Brave Little Soul

On this 'trisomy journey', I have learned so many things, and have been subjected to many viewpoints that differ from mine.  The most common argument used for why children like Rebekah should not be given a chance is that they will endure a lifetime of pain and suffering. Thus they are terminated or denied medical care after birth because prolonging their life would be irresponsible and cruel.

I think using 'pain and suffering' as an excuse to terminate pregnancies or deny medical care is just plain crazy.  While I do not deny that my daughter feels pain when she has to go through medical procedures, simply seeing her smile (even in the midst of an uncomfortable situation) speaks volumes about her own will and drive to live.  If I were to personally get cancer, or have a debilitating illness, I can guarantee that I would endure the 'pain and suffering' of treatment in order to be here for my family.  For most people, if their loved one requires intervention to live, we do what we can to provide it. If a 'chromosomally-normal' child were born, but had severe obstructive apnea or a life-threatening heart defect, it would be considered abuse not to seek treatment to correct the problem. Yet we sell the idea that treating trisomy 18/13 kids the same way is irresponsible.

People also use pain and suffering as an excuse to deny that there is a God, or that God is good.  I believe that God uses times of trials and suffering to make us lean on him. He gives us strength through our weakness, and it can mold us into better people - compassionate and loving and equipped to show Jesus to the world. There are so many verses in the Bible that speak about pain and suffering. Here are just a few that speak to me:

• “My grace is sufficient for you, for my power is made perfect in weakness.” (2 Corinthians 2:9)
• “This suffering is all part of the work God has given you. Christ, who suffered for you, is your example. Follow in his steps.” (1 Peter 2:21)
• “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.” (John 9:3)
• “Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us.” (2 Corinthians 4:16-17 / The Message)

This song is an incredible reminder that Blessings can come in the pain and suffering of this world. It is followed by a story called "Brave Little Soul".  May they both bring your peace and comfort!
Susan

Laura Story - "Blessings" Lyrics

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops

What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom

Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops

What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us

When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home 

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Here is another perspective on why suffering happens:

Brave Little Soul
By John Alessi
Not too long ago in Heaven, there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day, however, the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “...Why do bad things happen; why is there suffering in the world?”

God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean?”, he asked. God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”

The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their hearts, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle - for the good of all humanity.”

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!”

God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you, and suffer along with you, far beyond the others. They have already chosen a name for you.”

God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”

Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys - some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Love changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

 

A Nineteen Month Reprieve Ends... (PART I)

After going an amazing 19 months without a hospitalization, we finally broke our medical reprieve.  On May 30th, Rebekah started vomiting and was switched to Pedialyte to give her stomach a rest. On Memorial Day, she spent the day either sleeping or vomiting. She always tolerates pedialyte, so this was a different experience. I figured she had a virus. But after over 8 hours with no wet diapers, I called the pediatrician and they told us to head to the ER for IV fluids.

We spent 8 hours in the ER until they decided to admit Rebekah to the Peds Floor at Greenville Memorial Children's Hospital.  They started Zofran to stop her vomiting in the hopes we calm her stomach enough to restart at least Pedialyte. But after running standard blood and urine cultures, it was determined that Rebekah had a pretty significant UTI. We still didn't know the strain, so they put her on IV Rocephin, and we figured in a day or two she would be back to normal.  But it didn't go that way...

Because of the concern of the UTI extending to her kidneys, we did an abdominal ultrasound on 5/31.  It showed no major issues of Rebekah's kidneys or liver. By Wed morning, Rebekah's tummy was becoming visibly distended.  Rebekah continued vomiting despite the zofran, and was starting to vomit some bile here and there. All of this was a mystery since her blood work did not show anything significant (outside the UTI), and her white blood count numbers were actually going down. 



Michael kissing Rebekah during the Upper GI Study



An abdominal x-ray was ordered which showed a blockage in the smaller intestine. Because the doctors weren't sure if it was a complete blockage, they ordered an Upper GI Study to look at how things were digesting. To complicate matters, Rebekah had been on IV fluids since Monday evening, on IV Zofran for vomiting, and continued to vomit at least once every 3-4 hours. Her stomach was becoming more and more distended and the amount of bile backing up into the stomach was becoming significant.

Rebekah's distended tummy on Wed 6/1

For a period of about 12 hours, we attempted to administer multiple doses of barium to Rebekah for the upper GI x-ray series showing the progression of the barium through her tract. She kept vomiting the barium along with larger and larger amounts of bile. What little passed beyond the stomach was going no where. She was becoming more agitated and unconsolable. She absolutely did not want to be touched.

Rebekah's tummy on 6/2. The g-tube button was being pushed by so
much pressure that it was sticking out was past the stomach.

After the last xray at 7am Thu morning (6/2), her stomach was so bloated it was hard and her g-tube button was actually pushed up out of her skin. The pediatric surgeons decided that we were getting to a critical point and could not waste time trying different tests. We signed the paperwork, then I brought up a very sensitive issue with the surgeon.
I said, "I am sure you don't need to be told this, but if Rebekah codes during surgery, or there are any major issues, you are to do every thing the can for her."
Well, his response pleasantly surprised me. "When we cross the door into the OR, we do absolutley everything we can for our patient. Even if they had a DNR, it would stop at the door and be ignored."
(Rebekah does NOT have a DNR (Do Not Resuscitate order), but his point was in the event of an emergency, they treat everyone equally. How refreshing!.

Dropping Rebekah off at the OR.
Michael had to be at home for Isaiah's Kindergarten graduation.
It's tough having to 'choose' between your children. :-(

So Rebekah was taken to 'emergency' surgery Thu morning around 9:30 am. We met with the surgeon around 12:30p for a post op consultation before seeing Rebekah. She did great during surgery and they found and fixed the problem!

Rebekah's tummy when we picked her up post-op. Looks so much better!
It will continue to shrink as she recovers from major abdominal surgery.

Rebekah once again becomes a medical anomaly and defies statistics by having a Meckel Diverticulum present in only 2% of the population.  This extra section and about 3 inches of surrounding intestine were removed along with several adhesions. They threw in an appendix removal for free! LOL.  And to make things even more interesting, her Meckel Diverticulum didn't act 'normally' by bleeding, but inflamed the intestines enough to wrap around it causing a major obstruction. We had MAYBE another day before this would most likely have turned into periotinitis and/or necrotized (dead) intestine and become a major life threatening problem.

Sweet Rebekah looking much better after surgery.
Her face is relaxed and her lips actually have color.

Her GI doctor can't wait to see if this totally changes her digestive system issues! This may have been the culprit behind a lot of her early digestive system problems.

I want to end Part I of this story by sharing the story of Rebekah and her brother, Elijah.  Rebekah has been miserable for this past week. She hasn't smiled at Mommy, Daddy, or even her Nurse Becky. She has been very grumpy for the nurses. But when her big brother showed up Wed night, she cracked a grin, touched his face, and even held his hand. 

While that is a 'nice' story, I am telling it because there is a false assumption that trisomy kids are vegetables that are a burden to take care of and who will never know you. This is so far from the truth! Every trisomy 13 & 18 child I've met has a happy demeanor, a loving soul, and most definitely a recognition of their family. They are a special blessing, and sent to teach us about courage, hope, and unconditional love. I thank God so much for entrusting Rebekah to our family. It is where she belongs...

Rebekah and Caleb

In March Rebekah and I had the great privilege to visit her trisomy 18 friend, Caleb, for his 2nd birthday.

Here are a few more photos from our 'wedding' between Caleb and Rebekah taken by Ocala Star Banner journalist, Jacqui Janetzko. Thank you, Jacqui, for these beautiful memories!!

 

My friend, Jeannette (Caleb's Mom), is really blessed because their local newspaper is following Caleb's life story. They have followed his birthdays and major events, and will be posting monthly articles on life with a special needs child. In addition, the Adamyk's have been asked on several occassions to give a presentation at the local university to med students on trisomy 18. What an awesome way to educated these students so that they will hopefully manage their future trisomy patients on a case-by-case basis, and not under the assumption that all children with trisomy 18/13 are incompatible with life!

I am so proud of Jeannette and so happy for the positive impact Caleb is able to make on others! And I am so glad that her local media is sharing Caleb's story!  I wish our local newspaper or news stations would find a message of hope like this as something newsworthy...

Stroll for Hope - TEAM BUDD ZOO

TEAM BUDD ZOOBack: Michael & Susan
Front (left to right): Isaiah (6), Jeremiah (8), Elijah (10) holding Rebekah (2), Josiah (4)

Please support TEAM Budd Zoo in a Stroll for Hope to raise money for SOFT.  Your tax-deductible donation of even a few dollars will go to help educate both families and the medical community about trisomy 18, 13 and related disorders!  Read below for more information...

When I was pregnant with Rebekah, the majority of the information I got from doctors and online resources were full of doom and gloom. We prepared for the worst. But when Rebekah ended up living and thriving, I was left without information on how to care for her. One of the few organizations I've found that actually has medical advisors and trisomy experts, as well as an international registry of trisomy 18/13 families, is Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) - a nonprofit volunteer organization offering support for parents who have had or are expecting a child with a chromosome disorder (especially Trisomy 18 and Trisomy 13), and education to families and professionals interested in the care of these children. 

We are excited - all seven members of the Budd Zoo will be attending the SOFT Conference in Chicago in July! The conference will provide a free medical clinic for the SOFT kids, and Rebekah will be able to consult with 3 specialists to get additional advice on her care.  

As part of the conference activities, we will be participating in a Stroll for Hope event to raise money for SOFT. We are taking pledges/donations for our stroll around HOPE Hospital in Chicago, IL. Your donations are tax deductible and go to a great organization! And thanks to SOFT, our family has received a scholarship to help us offset the conference costs, and we want to be able to give back so other families can attend in the future. 

My plug for supporting SOFT (trisomy.org):
I encourage anyone facing a journey with a SOFT child, including the medical professionals that will care for them, to join this organization because of all the things they can provide:

• Help and support for families;
• Medical advisors who are experts on trisomy 18/13 kids;
• Materials available for care of trisomy kids;
• SOFT Times, a quarterly magazine full of informative articles, life experiences, practical information, summaries of latest research articles, tons of inspiring pictures of living and thriving children, and much more;
• New family packet that is a great resource.

I have found their materials to be awesome resources for our family and for Rebekah's doctors. The books include info like typical problems, recommended medical treatments, and growth curves for trisomy kids.

Most important - this is a volunteer run organization! Even the medical advisors are volunteer. All money donated to SOFT goes to subsidize conference costs, create informative materials for families, education opportunities, support of trisomy-related studies, and so many other good programs! It DOES NOT pay for salaries or projects in conflict with the purpose of the organization.

Thank you for your love and support of Rebekah, and children like her!

Little God Moments...

In the hustle and bustle of life with 5 kids, a calendar full of activities from early morning until late night, and sleep deprivation, I sometimes find myself getting frustrated with life...feeling a little out-of-control and discouraged.

In an attempt to get that under control, I am trying to do a better job of clearing my calendar of nonessential activities, focusing on daily quiet time (with the help of my new NLT One Year Chronological Bible), and appreciating my very blessed life more. But I struggle daily with being focused on myself and not focused enough on what God is doing or wanting from me 'today'.

Today's reading included a passage from Psalms 9:1-2.

I will praise you, LORD, with all my heart;

I will tell of all the marvelous things you have done.

I will be filled with joy because of you.

I will sing praises to your name, O Most High.

So it shouldn't come as a surprise that I had a moment that made me want to tell everyone how good my God is!  It was a moment that really encouraged me and made me look at the last few weeks to see how God is always working in my life, even when I am not giving him my best.  I wanted to capture today's moment and one other recent moment so I can remind myself and others that we experience these little God moments all the time - we just need to take the time to recognize and rejoice in them!

So here's my God Moment...
Michael is out of town and I needed to get all 5 kids to a piano recital practice at 6:45p. If I cooked, it just wasn't going to happen. So thanks to having some free kids meal coupons for Chick-fil-a (and thanks to Bell's Crossing Elementary and our Woodruff Rd Chick-fil-a), we had dinner on-the-cheap.  That alone is a blessing! :-)

A couple sitting near us in Chick-fil-a were driving through town and decided at the last minute to stop at this particular Chick-fil-a so that the boy with them (I didn't catch if he was their son, grandson, nephew...) could play and hopefully find someone else to play with for a few minutes before they continued on. The child was thrilled to see my 4 boys there!  They asked me about Rebekah and we started talking. They put two and two together and realized that Rebekah is the unborn baby they had been praying for over 2 years ago and continue to pray for, thanks to learning her story from their neice who attends my church. What a small world! And what a blessing for them to meet the little miracle baby they had faithfully been praying for!  They were surprised how well she looked/acted for being considered 'incompatible with life'.

In addition to getting to meet Rebekah, they were also able to give me some important advice and a promise for future help so that I might be able to have a better chance of getting some media coverage for one of our future local trisomy family meetups.  We were both encouraged and excited about this God-orchestrated moment!

God Moment #2...

So as I was putting these thoughts together, another obvious God moment jumped out that happened just last weekend.

Saturday mornings, at the moment, are filled with soccer games. Last Saturday, we headed to Yogurt Mountain to socialize/celebrate after Isaiah's soccer game.
The coach's wife, Lisa, was not planning to go to Yogurt Mountain this day because it was on the other side of town and she wanted to get some things done. She really did not want to go.  But at the last minute, she just felt the urge that she needed to go.

When we got there, I pulled Rebekah out of her car seat with a feeding tube still attached to her, and managed to totally break off the button mechanism that allows the feeding tubes to attach and lock into her feeding button. It was going to be impossible to feed her without getting the tube changed out, and the type she has (AMT Mini-One Non-Balloon Button) needs to be changed at the Peds Surgery office or, in case of a weekend/after-hours, in the ER! 

The dilemma I had was that Michael, Elijah, and Jeremiah were getting ready to head out of town for a hiking/primitive camping trip that they had been looking forward to for weeks. And if they stuck around for my unplanned ER trip, their weekend plans would be ruined.  I had Josiah(4), Isaiah (6), and Rebekah. Just how fun could a long ER trip be with a 2, 4 and 6 year old? Also, I did not have her backup g-tube, it was 20 minutes at home and the opposite direction of the hospital. The hospital is 30 minutes from our house. So I am looking at about 1 1/2 hours of driving time too.

I decided to sit there and at least enjoy some frozen yogurt until I figured out the least painful course of action. Well God bless Lisa, because she offered to take Josiah and Isaiah to their house (knowing that I had a long drive and wait ahead of me, and it would be hours before I could pick them up).  What a total blessing to me, AND to my boys!!  And the greater blessing is that Lisa recognized that she was meant to be there, at that time, for that purpose. And she was so gracious and insistent in her offer that I totally felt it was from her heart and that I was in no way putting her out or taking advantage of her. It was so great to be able to send them off with that family knowing that my kids would not be bored to death in the ER, that someone actually wanted to watch them, and that I did not ruin the weekend for Michael and my two oldest boys! And as I texted Lisa several times with updates from the ER, she continued to assure me that everyone was fine and she was happy to help out.

I was at the ER for quite some time, but I managed to pick up my boys just right before Lisa and her family had a scheduled activity. What God-timing for the whole day!

There are so many other little moments in my life that clearly show God's hand. I need to take the time to recognize them, appreciate them, and thank/praise God for such moments!

God is good, all the time! And all the time, God is good!