A Heart For Success: Learning From My Child With Developmental Delays

With a child's heart
Go face the worries of the day
With a child's heart
Turn each problem into play
No need to worry no need to fear
Just being alive makes it all so very clear... With A Child's Heart, Stevie Wonder

Sometimes, it takes a child to demonstrate what real strength, courage, determination, and success look like. Please enjoy this perspective from Ashley Martin about her son Rex, who was born with multiple heart defects and other developmental delays:

“How old were you when you took your first steps?,” he asked me.

Pausing, I said, “I don't know.”

“Exactly,” he said, “The fact is that you learned to walk. No one cares how old you were.”

As the mother of a child with developmental delays, this conversation with my pastor has popped in my head through every bump in the road and with every achieved milestone. Theodore Roosevelt said, “Comparison is the thief of joy,” and it has been stealing the joy of parents for years. We fight it, but eventually, it finds each one of us. It can show up in the child at library story hour who is half your child's age, double his size, and running circles around him. Hypothetically speaking, of course.

Crossing The Finish Line In The Kerrington's Heart 5K Fundraiser
2014

My first child hit every milestone on time and sometimes early. People were always commenting on how advanced her speech was for her age and how smart she was... and is. My son hit none of his milestones and took months to master things my daughter just did naturally. With many hours, weeks, and months of hard work, children who have delays will eventually achieve the same goals their peers likely achieved much sooner, but the celebration is much sweeter. If you are the parent of a child who some might describe as “behind,” hang in there. Keep working with her and know she isn't “behind” anyone because she isn't competing with anyone, but herself. Children arrive in their own time and they can't be rushed.

 

 Children's Books about Inclusion

Benchmarks definitely have their place, but when they become the measuring stick for a child's (or parent's) “success,” they lose their value. Success is defined as: the correct or desired result of an attempt. Do you notice something missing from that definition? “...by a certain time or age.” WE put these specific parameters on our children and redefine “success.” I can list the many successes, the added pressure from well-meaning grandparents, other parents, and especially from ourselves is unnecessary and, in many ways, can be unhealthy. 

I should probably clarify that. As a parent, you should be aware of a typical development timeline so you know when your child may need therapies to help them get on track. Just as it isn't good to be overly comparative, it is equally bad to be in denial of possible challenges. 

I am so grateful for the doctors and therapists who gently clued me in to my son's need for therapy. I confess that I was so overwhelmed with all he already had going on that I was oblivious. He had his first heart surgery at 13 days old and just seemed to have uphill battles from the beginning. At four months old, he was diagnosed with hip dysplasia and began aggressive treatment that involved a harness and later a brace that was to be worn for an unknown period of time (ended up being 15 months). So, when he wasn't rolling over by 6 months old, I blamed the brace. I told myself, “Of course he can't roll over; his hips are restricted 12—24 hours a day!” It turned out that he also has low muscle tone which meant rolling was going to be a challenge, with or without a hip brace. So, he began weekly physical therapy sessions. His physical therapist noticed that he only used his right hand...so, he began occupational therapy. Some months later, that same physical therapist (who became like family) mentioned my son's speech and how he might benefit from therapy in that area. 

Rex Sleeping In His Hip Brace

For 2+ years, he received a combined total of 10 hours of therapies a month. My life revolved around his therapy schedule and there were times when I just didn't think I could do it any more. Now, as I see my son run, climb, turn door knobs, and speak in full sentences, it was all worth it. He attends preschool 4 half-days a week where he receives weekly therapies in all areas and he still gets speech at home. He loves school and everyone there loves him! He can tell you all of his teachers' names, and is quick to tell you who is best friend is, too. He even went "peepee" in the potty for the first time EVER at school. Oh, and the way his big sister has grown into a “mini therapist” has been amazing to watch. She used to put his favorite toy on top of our ottoman to “make him work for it.” Next to me, she is his biggest advocate and cheerleader and he, of course, thinks she hung the moon.

Working on Rolling Over

I wish I could tell the mom of that non-walking 2-year old to enjoy him no matter what stage of development he is in. Don't dwell on the delays or setbacks, but focus on the successes. Now, that we are potty training, I told a friend, “He peed in the potty 7 times Saturday!” I am choosing not to keep track of all of the accidents because focusing on the negative never helped anyone and certainly never ended in SUCCESS.

Running Across The Same 5k Finish Line, One Year Later

2015

Team Rex

Ashley Martin has been a full-time stay-at-home mom and part-time blogger since 2007. She is active in her community and in her church where she hosts Bible study in her home and helps lead worship. She proudly calls herself a Heart Mom and is an advocate for families who have a child born with a Congenital Heart Defect (CHD). Ashley resides in Nicholasville, Kentucky, with her husband and two children.

Do you have a pregnancy, birth, breastfeeding, or motherhood story that you would like to share with other Blossom Moms? Please contact us! 

Congenital Heart Defect Week: The Heart of a Warrior!

Congenital Heart Defect Awareness Week, held February 7–14, is an annual observance to promote awareness and education about congenital heart defects (CHDs). They affect nearly 1 in 100 births every year in the United States and are the most common (and least funded) type of birth defect. 

Some heart defects can be diagnosed prenatally using ultrasound, some might be identified during newborn screening using pulse oximetry, and others might be discovered by clinical exam or when the person becomes symptomatic. An estimated 2 million children and adults in the United States are living with a CHD today. 

 

Be inspired by the amazing Heart Mom Ashley Hunt Martin, her determined Warrior Rex, and their family's CHD Week 2016. 

February 7th, How I found out: In early April, 2012, at 36+ weeks, I had stopped gaining weight and my belly had stopped growing. An ultrasound revealed my amniotic fluid was low, but, no matter how much I flipped & flopped on the table, they could not get a good, full picture of Rex's heart. After a week of bedrest (to hopefully increase my amniotic fluid), I went in for another ultrasound that showed there was a problem with Rex's heart. We were sent across town to a pediatric cardiologist who was able to tell us more about his heart, but admitted that we wouldn't have a complete picture until Rex was born. I was admitted that night and Rex was induced and delivered 2.5 weeks early the next morning, April 11th.

Ashley, Lyla, and Rex on the way!

 

February 8th, First Photo: I had a normal delivery. The NICU nurses were present just in case, but Rex was not rushed away. At this point, we still only knew what the pediatric cardiologist had told us the day before--the defect she had seen was minor and should correct itself at birth. A couple of hours later, Rex would have his first echo showing just how many defects his little heart had. Not counting the one that DID correct itself at birth, he had 3. He was sent to the NICU for monitoring, but Dr. Cottrill didn't think immediate surgery would be necessary. It wasn't until the blood pressure in Rex's legs plummeted on his 8th day that he was transferred to UK and his first surgery was scheduled.

Ashley and Rex

Kerrington's Heart Inc. is a 501(c)(3) organization dedicated to the education, support, and encouragement of children with heart disease, their families and caregivers.

 

February 9, Emotions/Fears: Rex's surgery was April 24, 2012, but our scariest, most emotional day came two days later. There is risk of brain damage, kidney function loss, paralysis, etc the longer the aorta is clamped. Those risks increase and the "safe window" of how long the aorta should remain clamped decreases with each clamping. Rex's aorta had to be clamped THREE times during his surgery. I blogged about that day here:
 

February 10th, Hospital Stay: Rex spent his first week of life at St. Joseph East before being transferred to UK's NICU. He was moved to the P(Pediatric)ICU after a couple of days, though, because he needed a central line and was being prepped for surgery. We had a private room and some amazing nurses! In fact, I have nothing bad to say about ANY of our nurses. They were such blessings! The bottom left picture represents a huge triumph--it was the first time I was able to nurse Rex. My sister-in-law and our favorite nurse, Korinne, fought for me when I was too emotional and stressed to fight for myself. His surgery was successful and he was healing nicely, but Rex struggled to gain weight (something he would battle the first year of his life) which kept us in the hospital much longer than we expected. Lyla practically lived with Seth's sister and family during that time with other family members and friends helping to get her to and from ballet and even chaperoning a field trip. It truly does take a village! Seth and I lived with our friends, Shane and Suzanne so we could be closer to the hospital and I had breast milk in freezers all over town. Finally, as we were on our way to church one Sunday, our nurse called to tell us that Rex was going home that day! We were shocked because we had been told that patients are rarely released on a Sunday. Those were the longest 3.5 weeks of our lives, but now, they are just a tiny blip on the radar.

 Please Donate to

Team Rex

February 11th, New Normal: When Rex sees the cardiologist every 6 months, he could have any combination of tests done. They always check his blood pressure which (these days) definitely doesn't go as smoothly as it did in the picture on the left. *A little sidenote: The artery leading to Rex's arm was severed and used to widen his aorta so he will never have a blood pressure reading in his left arm.* He sometimes has an echo (ultrasound of his heart, pictured on the right) and other times he has a chest x-ray. They "attempt" an EKG every time, but it's a toss-up as to whether or not he will cooperate and an EKG of a screaming child doesn't really give a very accurate picture. I am thankful that our day-to-day lives really aren't all that different from non-CHD families. Rex is only on one heart medication which feels like nothing compared to what others are going through.

Watch this video of  Rex's Miracle

February 12th, Honor Your Warrior: Rex has no idea what an inspiration he is or the impact his little life has already had on so many. This is one of my favorite pictures of him. (Taken about a year ago by my friend, Michelle Graham Shiflet.) It captures him perfectly. He has his "terrible threes" moments, but, in general, this is the face you see when you see Rex. He loves Daniel Tiger, all things music, DRUMS, to laugh, to scare people, and to help. He is wearing his Beads of Courage around this neck. Each bead represents a clinic appointment, test, or procedure he has endured. As you can see, this one is full--he has started his second one already. I am so proud this CHD Warrior calls me "Mom." He is truly a living testimony.

Wearing RED for REX! *Lyla will tell you she is wearing it for Valentine's Day. ;-)

February 13th, The Scar: This was the first bath I was able to give Rex. Rex's scar isn't where you would expect a CHD kiddo to have one. The defect that was repaired was on his aorta which is on the outside of his heart so they were able to do a thoracic surgery. They went in under his arm, between his ribs, and moved his lung to get to the aorta. Imagine that on a little 5 lb. baby with a heart the size of a strawberry. God is good.

February 14th, CHD Fact: This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects.

Rex's new book, "Jeremiah, the CHD Aware Bear, and Friends" arrived! "He [Jeremiah] was a Warrior, a mighty fighter indeed." Purchase your copy Today! 

To connect with the Congenital Heart Defect Community, join the conversation on Facebook. 

 

Do you have an amazing pregnancy, birth, breastfeeding, or motherhood story?

Share it with other Blossom Moms!