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If you\u2019d asked us\u00a08 years ago how CHD affects our family, we’d\u00a0be telling a different story. The first 3 years of Maddox\u2019s life, our world revolved around surgeries, appointments, and medication. It was difficult to balance our time between all of that and our then 3-year-old daughter. As the years have gone by, we have settled into our own kind of normal, and it\u2019s hard to believe that we can go days without even thinking about it.<\/p>\n
8 years later, our son Maddox is thriving. He loves to play sports, play with his brother and sister, sing in the choir, and participate in cub scouts. And he dislikes school like most boys his age. It\u2019s amazing to watch him accomplish things we were never quite sure he\u2019d get to do.<\/p>\n
While Maddox\u2019s CHD doesn\u2019t currently affect our day to day life, it has given us so many great opportunities to get to know other CHD families and make life long friends. One of the kid\u2019s favorite weeks of the year is attending Heart Camp with other CHD\u2019ers and their siblings. It\u2019s so great for them to know other kids who have similar lives to theirs. As parents, it\u2019s been a blessing to talk with other parents and see other kids thriving. From the beginning, that has helped us have hope.<\/p>\n
We asked Maddox \u201cWhat\u2019s it like to have a special heart?\u201d This is what he said:<\/p>\n
\u201cIt\u2019s fun! There are so many fun things you can do, like go to Camp Hawkins. And I get to be in Mascot Miracles and hang out with the mascots.\u201d<\/p>\n
Maddox doesn\u2019t talk about it much unless we ask him specifics. He takes an aspirin in the morning and goes about his day. When we told him about his upcoming yearly cardiology appointment, he was super excited. He loves going to Primary Children\u2019s. He said he hoped they needed to do an echo, because that means he can watch a movie. Oh, and there are video games in the waiting room, AND if they have to do a poke, he gets a prize. He has such a positive outlook on life, and we are grateful for his easy-going spirit!<\/p>\n
Bailee is 11 now, and had this to say about being the big sister of a \u2018heart kid\u2019:<\/p>\n
\u201cWe get to go to a lot of things, like the different groups and activities for kids like him, and we get to meet a lot of cool people. Sometimes it can be hard. When he had a lot of surgeries and mom and dad weren\u2019t around as much it was hard. He always needs more attention, and sometimes that is hard. When he was younger and had to be on the oxygen we had to watch him carefully. It can be scary if he has to have a surgery, even a simple one not on his heart. I worry about him.\u201d<\/p>\n
Landon is 3, and was born a few years after Maddox\u2019s last surgery. He hasn\u2019t known the worry that Bailee has. He loves to sneak up on Maddox and tackle him, he loves to interrupt all of Maddox\u2019s games, and he loves to snuggle up and listen to Maddox read to him.<\/p>\n
Overall, our family feels grateful to the doctors and nurses who have helped us have a pretty \u2018normal\u2019 life. While battling CHD isn’t what we would have chosen, the people we have met because of\u00a0it and the experiences we’ve had have made it a pretty amazing journey. We know there will continue to be ups and downs, but these last few years of ‘normal’ have been a gift that we will always treasure.<\/p>\n
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A Patient’s Perspective Maddox’s Story If you\u2019d asked us\u00a08 years ago how CHD affects our family, we’d\u00a0be telling a different story. The first 3 years of Maddox\u2019s life, our world revolved around surgeries, appointments, and medication. It was difficult to balance our time between all of that and our then 3-year-old daughter. As the years […]<\/p>\n","protected":false},"author":4,"featured_media":0,"parent":75,"menu_order":115,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"class_list":["post-1628","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/utahchd.org\/index.php\/wp-json\/wp\/v2\/pages\/1628","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/utahchd.org\/index.php\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/utahchd.org\/index.php\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/utahchd.org\/index.php\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/utahchd.org\/index.php\/wp-json\/wp\/v2\/comments?post=1628"}],"version-history":[{"count":9,"href":"https:\/\/utahchd.org\/index.php\/wp-json\/wp\/v2\/pages\/1628\/revisions"}],"predecessor-version":[{"id":1634,"href":"https:\/\/utahchd.org\/index.php\/wp-json\/wp\/v2\/pages\/1628\/revisions\/1634"}],"up":[{"embeddable":true,"href":"https:\/\/utahchd.org\/index.php\/wp-json\/wp\/v2\/pages\/75"}],"wp:attachment":[{"href":"https:\/\/utahchd.org\/index.php\/wp-json\/wp\/v2\/media?parent=1628"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}