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!