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.

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...

The Apnea Study

The 'books' will tell you that for the trisomy 18 babies that make it to birth, 90-95% of them will die before they are 1 year old. The primary causes of death are usually quoted as major heart defects or central apnea. Central apnea is where the brain is not telling the body to breath or the heart to beat while a person is asleep. Many of the doctors think Rebekah's issue is probably central apnea and there will not be an easy solution. We are hoping for a different story. This is what happened the day of and following the sleep study until we had an apnea diagnosis of central versus obstructive apnea.

5/22/09 – DAY 32 and Day 3 in the Hospital

5/22 4:12 pm - PTL! Today has been a great day! The current intervention continues to be extremely successful - we've gone from >300 'incidents' (with at least 10 full blown blue spells) in a 24 hour period to only 6-7 incidents with only 1 short blue spell. What a break! She had her first bottle after 36 hours of not eating and for the first time did not desat during the feeding. The challenge will be duplicating the current process at home since she is using a machine that isn't used in homecare (hi flow nasal canula) and her size is making cpap at home something that might not be doable. We have the sleep study tonight and more studies next Tue. We will be here into Wed unless they think up more studies.


Pretty in pink!


How do I eat with all this stuff on my head?


All ready for the sleep study.

5/23/09 – DAY 33 and Day 4 in the Hospital

5/23 9:40 am - I backed into the pizza delivery guy the other day who decided to street park behind our driveway just as I was backing out of it. Then I dropped my cell phone in the bathtub while giving the boys a bath. ~:-/ But at least I am getting some sleep finally!

5/23 9:50 pm - Update by Michael: We're ending another pretty good day. Our only "real" incident occurred during an experiment with a set up that would be easier to take home, so we're back to the 5 liter flow which seems to still be working well. I realized tonight (with Mark and Amy) that being here alone with Rebekah has helped Susan and me to focus on what she is doing. That focused attention has allowed us to see her obstruction patterns. The challenge is resolving the obstruction issue in a way we can take home. Tonight I am praying for the answer to that question.


The morning after the sleep study, we had to clean all the goop out of her hair. I think it actually took several days and baths to to get it all out!


Rebekah had to get a new IV line today.


My brother and sister-in-law stayed the weekend and brought their dog (and kids). Josiah loves the dog and apparantly the dog crate. He put himself in the crate and shut the door, then acted like a dog.

5/24/09 – DAY 34 and Day 5 in the Hospital

5/24 10:56 am - Update by Michael: Rebekah is eating exceptionally well today (60 cc's from a bottle twice) and she just weighed in at 5lbs 2 oz (3oz more than two days ago). She is back on a positive growth curve. PTL! She had some incidents last night, but they may have been caused by the nasal cannula falling out of her nose. Since it was retaped, we haven't had any problems. Susan and I will be switching places later today. In case your wondering, Rebekah was actually 5lbs. 4 oz., but we took off 2 oz. to account for what she just ate. For me to have the same percent increase in weight as 3 oz to her, I would have to put on 7 lbs.

5/24 7:20 pm - It's amazing what a few night of decent sleep can do for one's spirits! Well that and knowing that I have hundreds of prayer warriors out there and that I am a blessed child of God. :-) Ephesians 3:16 I pray that from his glorious, unlimited resources he will give you mighty inner strength through his Holy Spirit. Rebekah continues her great behavior and progress. We MAY be looking at a trach for a solution, but that answer will come after her Tue & Wed tests and meetings with the doctors. I'm just so happy that her problems are mostly physiological and a solution is in the near future!


Holding my baby girl...

Josiah helping out with the trash back at home. Gotta teach 'em early!

5/25/09 – DAY 35 and Day 6 in the Hospital

5/25 3:40pm - Dr. Gault (the sleep doctor) came in today just to see Rebekah! There are about 900 pages of a report to be reviewed but his preliminary report is... obstructive apnea! (not central which would be her brain function). I know we have to wait for the 'official' report, but this is AWESOME news! So another test will be added to the list and we will probably be here the whole week. But PTL for good news! Rebekah also had problems with desating this morning (her oxygen levels dropping), but it turns out that her nose was full of boogers. Once again - obstructive! Nose was cleaned out way back with a little tube thing and the humidity turned up on her high flow air. So far, no more episodes. And she is still eating great - about 2 ounces per feeding. WTG Rebekah!

Looking pretty for today's visitors!


Aunt Amy and Uncle Mark in the hospital room with Josiah.

Elijah, Isaiah, Josiah and cousin Nick.

Jeremiah and cousin Ben playing on my laptop in the hospital room. Thank goodness for wi-fi!

5/26/09 – DAY 36 and Day 7 in the Hospital

5/26 5:37 pm - The official word is definitely obstructive apnea! In fact, the doctor is pulling Rebekah off her caffeine. The most important test comes Thu - a bronchoscopy where a little camera will be inserted up her nose and down her wind pipe to below her vocal cords. We are so appreciative of all the support we've been receiving. We do still need a little more childcare help this week. Oh, and the doctor said that it is a significant finding that she does NOT have central apnea since she is a trisomy 18 child. Hip Hip Hooray! Your prayers are working and God is good!

Rebekah also had a swallow study today which showed some anomalies. In the swallow study, they mix barium in the formula, sit her up in a special chair, then take an x-ray movie of her swallowing. It's really quite fascinating! Anyway, her bottom jaw is small and her tongue too large for it. Her palate (roof of her mouth) is a little short, so when she swallows, she actually sometimes pushes the food up her nasal passage! This will probably mean she will be prone to sinus infections. She also swallows in a way that each swallow dips down to the vocal folds in the trachea, but doesn't necessarily penetrate it. But that means that she has a higher probability of aspirating and probably micro-aspirates. (Good thing she doesn't know this, because she's been doing a great job eating!) We were able to play around with some different nipples and find one that works best for making her swallows more 'normal'.

Sound asleep after the swallow test and a bath. Doesn't she look like a little rocker girl?