As we continue through February, the month of Congenital Heart Defect Awareness, we continue to share posts from moms parenting children with heart defects. Our goal is to inform and equip those considering or home with children with this special need by sharing the real-life experiences of those already parenting a child (or children) with a CHD. You can read previous posts from this month – which also features the subject of marriage – here.
Today we share a post by Sonia, who previously contributed here at No Hands But Ours, writing one of the most compelling posts on children with heart defects we’ve ever published here. So when the subject of heart month came up, we naturally thought of Sonia, too. And she graciously agreed to share with us once again.
Sonia is the mother of 7 sons ages 11, 11, 11, 12, 12, 17, 18. She spends her time in her testosterhome cooking, cleaning, preparing to cook more, cleaning, cooking, cooking and sweeping baseball infield dirt off of the kitchen floor. She is madly in love with her Savior, finds humor in the most ridiculous of circumstances, and dreams of moving to China one day to point the lost toward the Light. She used to blog until she realized there isn’t enough coffee in the world to enable her to blog and raise 7 sons. But she has scattered some crackers and water bottles throughout the house to tide them over and will soon be picking up where she left off. You can read her other posts on No Hands But Ours here.
Remember that day a couple of months ago when they sat me down and told me they believe Joshua has leukemia?
Yeah. It was that kind of day.
Ya’ll that have followed Joshua’s story know that he came home 3 1/2 years ago a very blue, very sick little boy. He had unreparied Tetraolgy of Falot with Pulmonary Atresia & DORV. ToF w/PA is considered the extreme form of ToF and Joshua sat untouched with no interventions until his adoption at nearly 8 years old.
O2 sats at admission were 41. He was painfully thin and incredibly cyanotic.
But alas, he landed, was admitted, cath’d, deemed operable yada yada and was wheeled into the OR for his heart repair all within a few days of arrival to the US. Welcome to America! Your new life begins in the PICU with strangers who serve you really bad foreign food (w/cheese! The horror!!), we all speak a language you do not understand and now we will proceed to cut your chest open and shove a tube down your throat! Yippee! It was epic. But not in a really good way.
Fast forward a month and that blue little boy walked right on out of the PICU and into my car to begin a life with this crazy white woman he has only known for 30 days, who seems nice and brings him noodles.
Since then he has been great. Like great-great. All three of my Asian Sensations are rarely sick which I chalk up to their rockstar immune systems that they probably acquired in the orphanage being exposed to all manner of germs. They are continually healthier than my American born, grew up with everything Lysoled to an inch of it’s life kids. And so it was that Tuesday when he left for school and everything seemed just fine…..
He bounded in the door after school, flashed me that Joshua smile, gave me a hug and went on the hunt for a snack. Normal day. Normal Joshua. It was around 5:30pm that he very delicately hobbled into the living room complaining that the bones on his legs hurt. I… in response… did what every other normal mother would do….gave him a pat on the back as I went to clean the kitchen and told him he was fine, to hang out on the couch for a few minutes and didn’t think a thing more of it. 20 minutes later he was still hobbling, not weight bearing on either leg, using furniture to support himself to get around the house.
So I did what any normal mother would do… I peeked around corners to see if he was doing it when no one was watching. He was.
So I did what any normal mother would do… I carried him upstairs so he could take a warm bath. He came downstairs 35 minutes later, said it didn’t help.
So I did what any normal mother would do… I gave him some Advil, put him to bed (as it was now bedtime), kissed his head and assured him he would feel better by morning.
And didn’t think a thing of it.
The next morning I was standing in the kitchen, sipping coffee directing the morning traffic of lunchboxes, snacks, and baseball cleats that having 8 boys in a house inevitably brings, when I realized Joshua wasn’t downstairs. “Where’s Joshua?” I asked the boys. “He’s still in bed” Jacob replied.
So I did what any normal mother would do… I grabbed my coffee cup and proceeded upstairs to give a “mommy talk”…ahem….lecture on the fact that it is his responsibility to get up when I wake him up the first time, get dressed, brush teeth and come downstairs.
What I found instead was a wide awake Joshua laying prostrate in his bed saying that he couldn’t get up because his backbone hurt so badly.
So I did what any normal mother would do… I helped him up, singing my good morning song and assuring him he would feel better when he got moving around.
When I got him out of the bed it became apparent he couldn’t stand up straight. Not even close. He could barely stand at all because of the immense amount of pain in his back. Legs, now good. Back, bad. Very bad. So I carried him downstairs, gave him some more Advil, tucked him in on the couch and got the other kids to school. A few hours later he could sit up with no back pain, but was now non-weight bearing on his left ankle and was experiencing some progressively worsening eye pain. What. The. Heck.
It was midday when I decided to go ahead and make him an appointment. Prior to this Joshua had been to his regular pediatrician exactly 0 times other than for his yearly well child checkup. Dude’s just healthy. Holla.
By the time of his appointment around 3:00 that Wednesday I was outside when it was time to go and when I called for him the child literally bounded down the stairs to get into the car….pain? What pain? Girl, you be trippin. He’s all good. So as he buckled and happily chatted away, I sat there for a few minutes debating in my head whether to even take him in or just not show up for the appointment. To look like an idiot… to not look like an idiot that was the question. Hello Dr., don’t mind the child doing cartwheels in your waiting room, he has been having excruciating roaming bone pain for nearly 24 hours now. Really. I pinky promise!
I ultimately decided to take him to avoid the automated phone call admonishing me for not showing up for a scheduled appointment. Seriously we moms cannot win for trying, can a sister get a witness? I told the Dr. I felt like a tool bringing my smiley carefree child in to effectively waste her time. She agreed he looked fine, and tried to make me feel better about bringing him in… yeah… still felt d.u.m.b. She did go ahead and run a series of cardiac specific labs and a quick CBC just to be sure. So with my head hung low as I walked past the actual sick children in the waiting room feeling like a total tool, and with one happy, pain free child we swung by the lab and went home.
20 minutes after I walked in the door my phone rang.
It was the pediatrician sounding more worried than I have ever heard a pediatrician sound before in 18 years of parenting. Cardiac labs looked great….but his white blood cell count and his hemoglobin were both horrifically low. She had already called the Children’s Hospital, faxed his labs to them and we were to go straight to the ER.
So I did what any normal mother would do… as I am simultaneously watching Joshua do ninja moves with his brothers, cooking dinner, getting the twins ready for baseball practice and listening to this doctor tell me how sick my child is…. I told her we wouldn’t be there until around 6 or 7 because I had to get dinner in the oven and kids to practices. Don’t judge man. He was literally doing jumping ninja moves right in front of me giggling that giggle that only he can do. Worry shmorry. I gots to get these fajitas in the oven.
I wrapped up all the momminess that needed to occur that evening and drove him the 45 minutes to the Children’s Hospital. They gave him a mask right away because with levels that low homeboy had an immune system that was basically non functioning and put us in a “special” germ free room. They ran a set of their own labs and his WBC count had ticked up two points…..and he was still running around without a care in the world, joking with the nurses, looking healthier than…..than….I don’t know….than something really, really healthy. The ER doctor came in, told me that because his counts had ticked up slightly it is most likely viral and sent us home. We skipped out of the parking lot, into the car and slid into bed around 10pm.
Over the course of the next 24 hours that sweet, happy child was, by Thursday afternoon, replaced with a kid whose color looked awful, had intermittent fever, who was experiencing now severe eye pain, (what????) who couldn’t stay awake, and had bone pain worse than it was before. Knowing that it was viral I kept him comfy, Advil’d up, and gave him whatever I could to encourage him to eat. Favorite noodles? You got it. Milkshake? Totally. Ice Cream? Coming right up.
Midday Thursday it was clear to me that I did not feel comfortable going through the weekend with his ever worsening state and near constant bloody nose and gums. I called his Pediatrician and asked if we could run another quick set of labs to see what direction his levels were trending…..she cut me off midsentence aghast that we were home as she had assumed he had been admitted the night before. She said yes, absolutely, bring him in now. We went, we labbed, I carried him back in the house and the exact same scenario played out. Phone rings, levels are way worse than even before, go now, do not cook, do not mother, do not pass go, just go.
We arrived Thursday afternoon to the ER and after yet another round of labs that demonstrated his levels were falling quickly, and an ultrasound of his liver and spleen it happened…..
The ER doctor and her resident walked in, pulled up a chair on either side of me. One of them took my hand, the other patted my leg and they said the words.
“We believe that Joshua has leukemia.”
So I did what any normal would do… I was numb. They ran down the list of markers and symptoms associated with the diagnosis and that he perfectly met each one, including an enlarged liver and spleen, the eye pain, the intermittent fever, night sweats, roaming bone pain, the markers they look for in his blood, and and and and… . They offered compassion and sympathy. I asked what was next, they said he was being admitted and they would do a bone marrow biopsy in the morning to confirm. They gave me a box of kleenex and as I sat staring emotionless at a sleeping Joshua, they walked out to set up his admission. I walked out to the parking lot to get the iPad for him from the car….. which was really just an excuse to have a massive ugly cry breakdown in the parking lot. Breakdown, check.
And it’s about right here that I switched over. I had my 10 minutes of stomach wrenching sobbing, my moment of dear Lord why him? 8 years in an orphanage sick and dying, home for a few short years and now we are going to ask him to face leukemia? Justice? Anybody seen any justice around here?
And then I was alright.
I found my Center.
Truly. I flipped a switch, remembered who I was (Hello, Daughter of the King, nice to meet you) remembered Whose he was, remembered Who knew, who knew it all. And so I stopped doing what any normal mother would do and I started doing what any child of the Most High God would do, I trusted. I trusted and I waited.
Friday morning the oncologist came by to tell me they had an emergency come in and had to pull the anesthesiologist from his case. She said she could do it tomorrow (Saturday) but that she was pretty certain we were looking at leukemia and she would rather wait until Monday when the entire team was there. Ok, so we waited. Joshua slept, played games when he felt like it, took a bath with his IV hand covered in a trash bag, watched movies and dealt with the intermittent bone pain, and random fevers. He would be playing a video game one minute, and lose feeling in his hands and feet the next. It was S to the trange.
Monday morning arrived, and around 11 they came and got him to take him to the same day surgery area for his biopsy, I signed many forms and off he went. I took my assigned pager and went to the cafeteria to well…..eat…..eat much food…I like food…and talked with a dear friend. He was done within about an hour, was taken back up to his room and we waited…..and waited and waaaaaaaiiiittteeed.
Hello, we think your child has leukemia but we aren’t ever going to really tell you for sure. The oncologist and the residents came by a few times during the course of the day apologizing saying they hadn’t heard from the pathologist yet. No worries, I am the mother of 7 sons. I got this patience thing down.
Then I ain’t gots no more patience. I walked out to the nurses station and politely asked that they page the oncologist again because ummmm hello! It’s 6pm! Give me the specimen, a microscope and google and I’ll tell us within 5 minutes whether it’s leukemia or not! How hard is this? Shortly after the oncologist came by again, apologizing saying that the pathologist had apparently long since left for the day but did not put in a note as to the findings of the biopsy. It would be morning before we would know.
To be sat down, patted sympathetically and told on a Thursday night that your child probably has leukemia and to still not know definitively by Monday night was well…..challenging. If it’s not leukemia, great! If it is, let’s get this show on the road, but for the love could we please figure it out one way or another. Tuesday morning went by…..no word. Tuesday lunch went by…..no word. Finally by midday Tuesday I was sitting out in the hallway when the oncology resident came round the corner. As I caught her eye and began to stand to walk toward her she spoke two words….
And it’s here that I get to the point of this rather lengthy story.
No leukemia. To God be the Glory, He answers prayers.
But ultimately if it had gone the other way, let us say Leukemia. To God be the Glory, He answers prayers.
His Glory, His Sovereignty, His Presence does not shift or wane depending on a diagnosis.
His calling doesn’t change with the opinion of a physician
It does not shatter depending on the results of a cath, or a biopsy or a…..anything.
It does not does not does not diminish when my road becomes rough
And His glory certainly does not become less with a leukemia diagnosis.
He is good. He is worthy of praise. He is faithful to hear us. But as I said before bringing Joshua home, if he lives, praise be to God. And if he dies, praise be to God!
Because here is the thing…
I’m confused by the perception that continued life on this earth is where the victory is.
If we really believe what we say we believe about His unfailing love for us, if we believe what we say we believe about Heaven and what awaits those that are sealed in salvation through the cross, through the blood, if we really believe that GLORY awaits us why do we tend to only offer the praise in life on this earth? It almost seems backward. In life we praise the Lord… but it seems we often forget to praise Him in earthly death.
Adopt a “terminal” child? Sorry Lord, no glory there.
Adopt a complex kiddo with a shortened life span? Nothankyou, not enough time on this fallen world that we live in.
A physician tells you the road may be rough and unpredictable after looking at a file? Let us say SIGN ME UP.
So I seek to rid myself of the behaviors of “normal mothers”. I don’t want to be normal. Christ was definitively abnormal. Whether in good news or in bad that we may be a light in darkness. That when we think we should be curled up in a corner reading Lamentations in bad news that we may instead rejoice in a Savior that chose. us. A Savior that chose to be in fellowship with us. A Savior that sees the whole board. He knows the next move, He knows where victory is attained, and I’ve read the Book. Victory ain’t here. It’s coming. We are going. But it’s definitely not here yet.
So when “normal mothers” are crying out in incredible pain and confusion of the sickness in their children asking why….let us be light. Let us be different. Let us lean in and point them toward the One who holds our hope. Because really, if you’ve surrendered your life, your children your everything to Christ, you are on board the abnormal train too, it’s the place to be and leukemia or anything else ain’t got nothing on that.
Praise you Lord for seeing us in our depravity and sending your precious Son to be our gateway to You. Praise you in leukemia or out of it. Praise you in sickness and in earthly death. Praise You that our joy is not in our temporal circumstances but is born out of our relationship with You. ALL Glory to You. Not what we think is the good happy good news glory, but ALL glory.
In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith – of greater worth than gold, which perishes even though refined by fire – may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen Him, you love Him; and even though you do not see Him now, you believe in Him and are filled with an inexpressible and glorious joy, for you are receiving the end result of your faith,the salvation of your souls. — 1 Peter 1:6