Tis the Season!

And now, a word about Christmas from our boy child:

Kinda melts your heart, huh? We are so thankful for this little boy! We are thankful that he "gets it" when it comes to the meaning of Christmas. We are thankful that we have him this Christmas. Realistically, if Pierson's CHD hadn't been caught and surgically corrected he wouldn't be alive right now. He didn't have much time left. To know that he has a second chance at life --- and that his precious little heart is learning to love Jesus make me want to rejoice and cry all at once.
We have been in full swing celebrating Jesus' birthday here for a while. I love everything about this time of year. Something that no one told me about becoming a parent is that life gets more fun -- and that includes Christmas. We have been having a blast. We have had more fun celebrations this year. We feel so thankful that Pierson is more interested in Jesus' birthday than Santa or presents.

So here's what we have been up to:

Climbing and sliding down the planters by the duck/turtle ponds at North Park. We are so thankful that he has the energy/desire to do this. Last year he would just watch the other kids. We just thought he liked to watch... not that he was conserving his energy/oxygen levels.






Our 2011 Christmas Card Pic snapped at the Gaylord

 We also spent a Sunday at the Gaylord Texan with my parents enjoying brunch, the ICE Exhibit and the amazing Christmas decorations there. We had a great time and even snapped a picture for our Christmas card. Well, I say we had a great time. Pierson actually really hated the ICE exhibit. After about one minute in there in an issued heavy duty parka he had a (rare) complete meltdown (excuse the pun) because of how cold it was in the exhibit. I now feel like we never have to worry about him moving horribly far away to some cold place for school or work.  I ended up taking him out early and letting Jeff and my parents enjoy. He was NOT happy at ICE but the rest of our visit there was wonderful! We had brunch by the river walk there and explored the train exhibit. We will be going back next year.



You can see here how much he did not love the cold!



Some of the most fun we have had was Pierson's Christmas program at his preschool. We are so thankful that God placed us at this school. We know that when Pierson goes to school his needs of spiritual, academic, social and physical growth are being met. We know he is being challenged and held accountable. All the children did a fantastic job! It was so fun to see the 2 year olds and how small they were and to think that P was that little a year ago. Pierson sung out loudly and we could hear him. He also demonstrated tempo very well when the teacher asked the children to do so. He gets his rhythm from Jeff. Not me!

P-Dawg and friends displaying tempo. P is looking at the teacher.

Pierson singing his precious little heart out at his preschool Christmas program

I keep thinking about how extra special these memories are and how extra special this Christmas is because we might not have had this Christmas with Pierson. I was thinking as we were watching him sing the other night how blessed we are. He might not have been up there if his heart defect had not been detected and corrected. One of the other moms of his classmates remarked to me about how much he has grown (we're almost at 4 inches since July) and I said, "Yes! Now that his heart is working he's growing like a weed" She was a little taken back. She had no idea he had heart surgery (they were gone most of the summer). No one is ever going to know by looking at Pierson what all he has gone through and how close we came to losing him. That's a good thing! We feel blessed that he is on his way to being a tall, strong young man. Our prayer is that other families with heart kids can look at Pierson and know his story and have comfort that their child will be ok too.

Of course, our greatest prayer for Pierson's heart is that it will be filled with Jesus. We pray that he grows to be a man of the Lord -- and that he exudes honor, courage, servanthood, and an unshakable love for the Lord and His people. Beat to praise Him little heart! Beat strong!

My Chat With a Grown-Up TGA/VSD Baby

You know when you're on Facebook and you see someone's status and it makes you think of them and memories you have of them? Well I saw Wade Ashby's status a few weeks ago and all of a sudden I was reminded that Wade was a congenital heart baby too -- only he's not a baby anymore: He's 29, that's older than me and he has a new baby girl of his own. I remembered my uncle talking about their friends who had the miracle heart baby when I was younger. That baby was Wade. Of course, that's just talk that grown-ups converse about as my cousins and I played barbies on the floor. I know Wade through my cousins who grew up with him in Snyder, Texas --- and I also dated his brother for a while in high school. I was his brother's senior prom date -- I was a sophomore, yes, I was pretty awesome. ;-) I will spare you the 1999 prom picture.
So I decided I would message Wade. He was always a nice guy. I was curious what his CHD was. Wade is an incredible man of God. He has his Master's of Divinity and works for Hardin Simmons University. I will sum up the feelings I had about how Wade's words blessed me and moved me and answered some questions I was having a hard time finding answers to at the end of this blog. The following is a copy paste of our messages. My words are in pink, Wade's are in blue.

Hey Wade! Hope all is well with you. Kelley said you guys are expecting a baby next month. Yay! There is nothing like the joy of being a parent.
Also, when Kelley and I were talking she reminded me you were born with a heart defect and I was wondering if I could be nosy and ask which one.
Our little boy was diagnosed with coarctation of the aorta and an underdeveloped aorta and had surgery in July and since then our world has been opened up to so many families with congenital heart defects.  I was just wondering which one you had so when meet new families who have babies and kids just diagnosed we can say we know an adult who has this. It's so comforting to be able to look at a adult who was where your child was one time to see that there is hope.
Does your CHD effect your life at all as an adult? Do you have to take any meds? How often do you have to go to the cardiologist? Any advice for parents raising kids with the same CHD you have?
I know it's kind of early in the morning for all of these questions! Hope is so precious to these families especially when they are first diagnosed and it feels like you just got broadsided.
Hope your day is so blessed.
Jane, that is correct we are expecting a little girl in 29 days but who's counting. =) Don't worry about being nosy you are more than welcome to ask me any question. My thought has always been to tell everyone about my heart condition so people can be aware of it and learn from and about it. I was born with Transposition of the greater vessels (or arteries). Basically my aorta and pulmonary vessels were switched causing me to have 2 circles rather than a figure-8 circulatory system. Along with the transposition I was born with a VSD (ventricular septal defect -aka hole in the ventricle) and this is what allow the oxygenated and un-oxygenated blood to mix. My first surgery was when I was about 9 weeks where they actually enlarged the hole in my heart and placed a band around my aorta to keep the pressure from hurting it. Then for the next four years I was cyanotic (blue boy) until my second surgery (a Mustard Procedure which they no longer preform) which reconstructed my heart. So now my heart flows backwards (what the left side of your does the right side of mine does) and has enlarged to compensate for the condition. As a result of the growing the electrical system started have trouble about 2 years ago and I had to get a pacemaker implanted at the age of 27 (23 years after the surgery). Now must children born with Transpositions just have the vessels cut and reattached properly so they don't get the fun story of being blue for four years =)
As of now I'm only taking one medicine which is a blood pressure medication that helps relieve some of the stress on my on my heart. I see my cardiologist in Houston once a year and call my pacemaker in every three months. As of 2007 (or there about) Baylor College of Medicine in Houston has a new branch of called Adults with Congenital Heart Disease and that is where my cardiologist is. As far as advice for parents…the greatest thing I think my parents did for me was to allow me to set my on limits when it came to physical activities while still being parents. So even with a heart defect I played a year of little dribblers basketball and 3 years of baseball with the understanding that I wouldn’t be allowed to play football because of the contact. Also teach the child that the heart condition (or any condition for that matter) does not define who he/she is but merely shapes him/her. The child can be whoever as long as the parent encourages and helps them.
Sorry for the long message, but one more thing. As I grew up in the church one of the hardest things for me to deal with was Psalm 139:13-14. Since it was said so flippantly in the church that every little kid is special (while they are) it left me feeling that God had messed up when he made me since I wasn’t “normal.” I also remember when people would say it and then remember I had a heart condition and then qualify it with especially you and your heart. Frankly it upset me because I wanted to be like everyone else to fit in. When I understood all of Psalm 139 that helped but the thing that helped the most was reading John 9. To think the man had to be born blind (no fault of anyone) so that Jesus could make a point. I had to be born with a heart condition so that Jesus can make a point (which there are many times He has when I look back in life).Psalm 139 is a verse we have repeated over and over again to Pierson literally since the day he was born as we were touching his sweet little fingers and blue little toes (why no one pointed out that his toes being blue might be a sign of a heart defect while he was a baby is still beyond us) And after his diagnosis in June it has been something we have kept saying but honestly in our hearts it’s been a little harder to say. We so never thought of tying John 9 in to that. Thank you so much!!!! We have no doubt that God is using Pierson’s heart defect, surgery and recovery for His glory and take great joy in this -- even though we never would have chosen this for how He would use him -- We know full well that it’s not our call. That’s one of the scariest parts of parenting.
I know other families with TGA /VSDbabies . I actually made friends with another mom in the heart unit while we were there who had a TGA baby who had just been diagnosed after her 8 week check up. That will mean so much to them to know an almost 30 year old grown up TGA/VSD “baby”.
Thank you so much for responding and so fast and so honestly.
Wade's parents are wonderful people. I loved hearing how his parents handled this. More than anything though what really touched me was what Wade said about Psalm 139. This moved me. I went and told Jeff and we both had a moment. Psalm 139 had become no less true to us after P's diagnosis -- but it had been a little harder to regurgitate and fully process. The Bible is God's truth. This verse was just as true as it had always been but it was like I was almost saying "except for his heart, it was broken" in the back of my mind. John 9. That's the chapter all of us heart parents, or any parent with a special needs child for that matter should always remember. Wade's words gave us hope and a renewed spirit and attitude. We are thankful for Wade. We pray that Pierson also grows up to also speak boldly about how God has used him and his broken heart. We would also be just fine if Pierson some day had his Masters of Divinity. I am grateful for Wade sharing with me.
--- On another note: We are full on in occupational therapy for Pierson now. He had a 1 hour session on Thursday and it wore him out. It's hard to watch him struggle --- it is fun to see him swing on the trapeze. I'm around geriatric therapy every day. As I was watching Pierson swing from a trapeze and sort rings while laying on a giant ball twice his size I got the funniest picture in my head of what my sweet little 75+ year old patients would look like doing the same exercises. I have to admit -- I giggled.
Pray for endurance for Pierson during his occupational therapy and pray that he keeps loving it and looks forward to it every week.