S.O.F.T. Conference

For photos of our adventure, see our Facebook album here!

On July 18 we drove to Omaha, Nebraska, for our first trip since moving to Colorado just over a year ago. We had been looking forward to the annual conference put on by S.O.F.T. (Support Organization for Trisomy 18, 13, and Related Disorders). Well, to clarify, Ted and I were looking forward to the conference, while the rest of the family excitedly made plans to meet up with their friends in the local area since we lived there from 2015 - 2017!

Anyway...the drive was fairly uneventful, though Verity did have a small bout of emesis during the drive. We decided to forego the bolus feeding during our driving days, and we simply maintained her feeding regimen while we were in Omaha. Overall she did pretty well, though it was obvious she knew she was not in her normal environment, and that did cause her some distress. (But it also gave us opportunity for some great cuddling sessions, since at least Mommy and Daddy were familiar and brought her comfort!) So there wasn't a whole lot of quality sleep, but we figured that would be the case going into this experience!

Here's a rundown of our trip:

WEDNESDAY
Driving day! Left our home at 7:45am (mountain time). Arrived at the conference hotel at 5:45pm, just in time to check in and get our conference bags. Then we checked in at our overnight hotel and went to Sinful Burger, a favorite restaurant of our family's. We met several friends there and enjoyed visiting. We said goodbye to the older 4 kids, who went to various houses to spend the night with friends, and had a rather restless night in the hotel room with the other 5 children.

THURSDAY
We dropped 4 kids off in the child care room and went to our first session, which touched on various legalities surrounding guardianships and trusts for special needs individuals. We didn't take notes but it was good information, and we did learn that there are so many differences from state to state that really the speaker was somewhat constrained in what she could tell us, as she works in Nebraska, but she was very knowledgeable and gave a fairly understandable overview of what kinds of things might be possible from state to state.

Our 3 little boys left after this session, as a friend of mine came to pick them up and take them to the zoo with her kids, followed by an overnight and more activities, so we were down to only 2 children for awhile, lol.

The next session covered ways to prevent seizures, light sensitivity, and headaches for our children. We were sitting in the back, and when the A/C kicked on, it was a bit hard to hear, but the information was excellent. I confess I was a bit distracted by all the wonderful people in that room! The previous session wasn't nearly so full, and I really loved looking around and seeing faces that I had previously only seen on Facebook! Ted and I especially enjoyed watching Faith puttering around in her walker--I've seen her videos on Facebook and have always been amazed at her! (Later in the week I got to meet her parents, and we talked at length about how they helped Faith learn to walk.)

Our third session was Integrative Medicine: Thinking Outside the Box, which was excellent. The doctor is herself a mom of a 10-year-old girl with Trisomy 13, and she spoke about so many natural options from essential oils to acupuncture to massage and more. Such good, practical information.

Then it was time for lunch. We visited with several families, and we decided to send Ted to get some coffee for us from The Omaha Bakery, a favorite of ours since Michelle baked Verity's dedication cake. We talked our way through the next session, as we had connected with a couple more families and decided to just hang out since we would have been late anyway.

Then it was time for the Moms-only and Dads-only sessions. It was a time to get to know each other, share encouragement, concerns, whatever. It was such a joy to see so many kiddos with their moms in our session! We had a huge photo op with I don't know how many kids on blankets on the floor. So precious! Verity was definitely the baby of the bunch. (By the way, 38-year-old Megan with full Trisomy 18 was the oldest T18 person we met at the conference!)

We reunited with Rhema after this final session--she did so well considering it was a strange place and a very long day! We went back to the hotel and changed to our dinner clothes (choosing pink items in honor of Stacy, a T18 young lady who loved the color pink and who passed away in the spring). Then back to the banquet room to enjoy the Welcome Dinner. I wheeled Verity in her stroller for the "Parade of Stars," which featured all the Trisomy attendees. We watched a precious dance performance from members of a local adaptive dance studio called Dancing Beyond Limits. The keynote speaker was Lizzie, a 32 or 33-year-old with mosaic Trisomy 18. She read a speech that was several minutes long--it was wonderful to see someone with a related chromosomal issue who can walk and talk and interact so well! (You can hear a portion of her speech here.) Lizzie knows and loves everyone--we were new, so she had to come meet Verity. :-) (Because I know I will be asked...a mosaic Trisomy only affects a certain percentage of cells. Whereas Verity has FULL Trisomy 18, meaning every single cell in her body carries the extra 18th chromosome, a person with mosaic T18 may have only 20% of cells affected, or 85%, or any percentage--make sense?)

We were pretty wiped out by the time the dinner portion was finished, plus we had two little girls with us who had not napped much to speak of, so we went ahead and skipped out on the dancing portion! That night in the hotel room was much better than the previous night, thank you Jesus!!

FRIDAY
Our first event this day was the Stroll for Hope, a S.O.F.T. fundraiser that has been going on yearly for awhile in memory of Jonathan. It was fun to see families dressed up and strollers decorated. With this being our first year, we didn't know what to expect, but wow, some people went all out! It was a leisurely walk around the hotel commons area, which was great because Omaha in the summer does not make anyone want to get out and exercise, lol.

We went from there to The Omaha Bakery again, because Michelle told Ted he had to bring Verity and me back! We also met up with one of our favorite NICU nurses, Donna, who was our discharge nurse when Verity got to go home from the hospital. It was so lovely to see these sweet women and let them hold Verity and admire how much she's grown!

Then it was time for clinics at the Children's Hospital. This was similar to the children's developmental clinic that Verity went to in May 2017. Each Trisomy family had an exam room, and the specialists rotated in and out, giving us about 20 minutes each. First up for us was the audiology team, who remembered Verity and were so delighted to see her again and hear about her progress! Then genetics, and again we saw a familiar face from our time in the NICU. I don't remember any specific thing we gleaned from these sessions...it was mostly us telling the teams an overview of Verity's history.

The physical therapist that came in gave us some great tips on helping Verity build upper body and arm strength. You can see the video here. His was a very practical session that I think especially resonated with Ted--both are dads and this PT had a different approach than the female PTs we've worked with!

It was really good to visit with the neurologist, a specialist we have actually NOT seen before. She went over the various types of seizures and the many different ways they present so that we have a much better idea what we should look for. Verity hasn't given any signs that she has ever had a seizure before, but we know they are fairly common with our Trisomy kids, so it's something to be on alert for.

Finally, we spoke with a GI doctor (not the one we saw when we lived there), and he was helpful in giving us a few different options for Verity's poo issues...though we are hoping they continue to improve as we add/increase the bolus feedings to her feeding regimen.

That was our conference day...our family day ended after we picked up our little boys, grabbed some pizza from our favorite pizza place in Glenwood, and went back to the hotel for some dinner and pool time before bed.

SATURDAY
We moved out of the hotel Saturday morning and then attended the conference picnic, where we met up with our older 4 kids (whom I had asked to come to the picnic so that they could have the opportunity to meet some of the other families who came). The picnic was wonderful! Face painting, balloons, games, espressos, smoothies, catered food, but best of all was the opportunity to leisurely visit with people. I probably could have stayed much longer, but our kids were getting antsy to get back to their friends, plus we were approaching nap time with little people, so we headed out to Glenwood, where we stayed for a few more days catching up with dear friends.

Our drive home would have been uneventful if it weren't for our 3-year-old, who is extremely prone to motion sickness, vomiting every couple of hours. Sigh. But all in all, we are so grateful we had the opportunity to attend the conference, meet so many wonderful people, and learn more about how to care for our sweet Verity! The next few conferences are a much farther distance away from us, so I am not sure that we will be able to attend them. What a blessing that this year the location was relatively close and allowed us to meet up with friends and family in the area!

Let Freedom Ring!

This is an Independence Day post, but I will start with a flashback to Christmas vacation when I was tucking my 3 little boys in bed. Lucan, my 8yo, was talking about something (I don't recall what exactly) that would happen in the future, and he was rattling off the ages he and his siblings would be at the time. His words were matter of fact: "I'll be 12, Zaden will be 10, Seanin will be 8, Rhema will be 6, and Verity will be 4, if she's still alive."

If she's still alive?!?!

My breath caught in my throat, and a knot formed in my stomach.

I don't remember how that conversation ended, whether I said anything in particular or not. I only remember standing outside of the bedroom after the door was closed and sobbing my eyes out.

Two months later, on February 28, 2018, Verity turned one year old. It was a huge milestone. Statistics we had heard since Verity was in utero indicated if she reached that one-year birthday, she would be one of the 5-10% who did.

The very next morning, March 1, Lucan ran upstairs to find his baby sister. When he saw her, his eyes grew round, and he shouted with excitement, "She's still alive!!!"

The weight of his surprise settled on my shoulders with a heavy realization: my sweet, tenderhearted son thought Verity would succumb to statistics now that her birthday was over.

And it hit me that twice now, my son had voiced the uncertainty of the burden under which we all were living, even if we didn't talk about it or acknowledge it...even if we didn't realize it was there to begin with.

Verity's birthday party came and went. Appointments, therapies, sleepless nights, little developments and progress, an overnight stay in the hospital, a bit of regression, more appointments and therapies, another hospital admission, recovery, more appointments and therapies, more developments...days slipped into weeks, which turned into months. And at some point in the middle of all this daily LIFE, I experienced a startling realization.

We had spent pretty much all of Verity's first year of life holding our breath, waiting...in a sense...to see if she would die.

Does that sound absolutely awful? I was heartbroken when I realized how true it was. We had said goodbye to more little ones in our Trisomy community than I could have imagined possible. Some of our closest little friends were in and out of the hospital, some fighting for their lives and making miraculous recoveries, while others fought valiantly only to slip away.

The unspoken question in our house for so many months--How long would Verity be with us?--somehow evaporated. We submitted requests for therapeutic and adaptive equipment. We registered for the Support Organization for Trisomy family conference. We stopped subconsciously wondering whether our baby would leave us and simply enjoyed living with her.

Do you know what that is, friends?

Freedom.

Freedom from fear and worry.
Freedom from uncertainty.
Freedom from depression and anxiety.
Freedom to savor and relish the little things.
Freedom from expectations.
Freedom to simply...be.

I'd be lying if I said we never feel fear creeping in. (A bout with aspiration pneumonia terrified me as I watched my baby struggle to breathe.) And I'd be misleading you if I said I never deal with uncertainty, or if I said I have managed to perfectly enjoy and cherish Every Single Moment instead of being concerned with what's for dinner or whether the toilets have been cleaned recently.

But overall? Our lives are characterized by far more joy than nail-biting fear. This is a testimony to the grace of God in our lives, to the growth He has allowed us to experience because of the sweet and precious gift He gave us in Verity.

I've told friends that I feel as though we have come out of a long, dark tunnel, that we are finally able to see the light and the beauty every day even though some days are still really hard.

And that to me is FREEDOM.

The Spirit of the Sovereign Lord is on me,

    because the Lord has anointed me

    to proclaim good news to the poor.

He has sent me to bind up the brokenhearted,

    to proclaim freedom for the captives

    and release from darkness for the prisoners,

  to proclaim the year of the Lord’s favor

    and the day of vengeance of our God,

to comfort all who mourn,

     and provide for those who grieve in Zion—

to bestow on them a crown of beauty

    instead of ashes,

the oil of joy

    instead of mourning,

and a garment of praise

    instead of a spirit of despair.

They will be called oaks of righteousness,

    a planting of the Lord

    for the display of his splendor.

--Isaiah 61:1-3