God Shared My Tears

It was a very hot day, I remember very little except that we had to take our child to the hospital for testing. It was July and the festivities of the day had ended in the ER, not with 1 child running a fever, but both. 2 IV’s for 1 and 1 IV for the other, and more Tylenol and Ibuprofen than I ever thought a little body could tolerate. I did not relax till 2 ½ year old S started to tell B that he’d be ok soon and if he wasn’t that he’d tell the doctor knock knock jokes till he did whatever was necessary to get him better enough to go home. The doctor heard that, and his eyes filled with tears, stepped away. I followed him. He said that he’d never seen a kid with that kind of logic so it made him laugh. But the the hope and faith that this top placed in him, was overwhelming. He asked me to let him gather his wits and he’d be in to check out the kids but he was sure that S at least could go home. B may need admission.


By the end of the day, both boys had been sent home and fevers were still there, but, they weren’t too bad. Both kids were willing to play some, listen to being read to and up to watching Bambi. It only took a few days for them to recover and bounce back to the great little boys they were in between their bouts of bronchitis, pneumonia, ear infections, the occasional kidney infection, plus the normal harmless colds, tummy aches and skinned knees.

B had found a formula he could keep down about half the time. He was taking in enough to account for that, yet, he seemed to not be growing. This, started to nag at a doctor or two but as of yet, they were just watching. Watching and waiting is a strange place to be for a problem solver. It became a common place for me. “watch and wait to see if this formula will work better” “watch and see if this virus will lead to a secondary bacterial infection” “watch and see if this third round of antibiotics will kick the infection” watch and see … and now it was watch and see if your baby will grow.

It was July, B was 7 months old. He was born at 9 lbs 8.75 oz. He’d lost weight and had trouble gaining but did gain it. I knew that at 5 months he should be double his birth weight. I wasn’t overly concerned that he wasn’t, because of the weight he’d lost. The family doctor may have told us at that it may play a roll, but technically, by 5 months, he should still be close to doubling his birth weight. Double would have a baby at 19 pounds. But B was 13. Even with having lost a bit, that didn’t account for it. He did not appear to be not getting enough calories, even with as often as he threw up (daily, with most feedings). He was pale and the eczema on his face just kept getting worse and worse which against that paper white skin looked like some kind of skin disease.

We took him to a dermatologist he’d seen before and he increased the steroidal cream, he again biopsied, not thinking he’d find anything that eczema, it seemed B was allergic to life. He reminded me that these steroid creams should be used daily, 2 times a day but in as thin of a coat as possible. It was still a steroid.

After we left the dermatologists office we went back to the Pink Palace for more tests. They gave him a ‘day admission’ (so they could feed him and us if necessary). They took him from me, apologizing that parents weren’t allowed in the sedation room or the MRI or CT scan rooms. They took my giggly little boy who thought the monkey on the technicians scrubs were silly. (they were fuzzy!) they took my vivacious sweet child and in a few minutes would give him medications that would put him to sleep and then place him into machines that scare adults. They’d give him IV’s for some medications for those tests. Then they’d transfer him down to nuclear medicine, still sedated but full of radiation, to do more tests. He would be scanned from head to toe and left pinky finger to right pinky finger. There would not be an inch of his body that would examined inside and out.

One of the reasons, I was told that the neurologist had ordered the CT scan was because his head had an unusual shape, large, yes but an odd shape that seemed to become more odd as time had gone by. They were going to find out if it was just a quirk, or if there was something to it.

After 4 hours of testing, poking prodding, they brought me back a fussy, half awake, throwing up child. They’d offered me lunch. I turned it down. There was no way that I could eat while I had no idea what my son was going through. My stomach in knots … and my heart on the verge of shattering … eating was not the priority.

The next day we had nothing on our agenda, a day at home. I got up, fixed the kids something to eat and looked at my self. Since the start of the medications, the lack of exercise my body was getting out of control. I skipped breakfast. Shortly before lunch, we went shopping as a family. We got some clothes for the boys, it seemed mute point to get anything for B who could still wear what he’d worn a couple of months ago, but there were some adorable matching outfits. We got them. Don went to the baby toys to entertain them while I ran to the pharmacy to pick up the prescriptions that were in and while I was there, I added 3 things to our order : diet pills, diuretics and Correctol. Diet pills, laxatives and diuretics. I could take them before I got sick, as long as I balanced them around my Mestinon I should be ok. The Diet Pills should only help in the energy level. We got home, I took my first diet pills and then went to make the boys lunch. I did not want any. D did not notice.

Dinner came and He insisted that I eat. My anger of being forced into eating was tempered only by the fact that I’d bought diuretics and laxatives. I ran into the bathroom to take them, and went and sat and ate dinner with my family. Shortly after, B threw up. We cleaned it up, and I used that as an excuse to ‘be sick’ and ran to the bathroom to rid myself of the food that had been so unwanted. The guilt over using my sons health as a way to do what I had wanted to do, I sat in the bathroom on the floor back to the wall until I could face my family again.

As I sat there I could hear the phone ring. D called me to the phone, it was Dr. Neuro. While he’d not seen the films in person, the radiologist had called and suggested we immediately deal with them. We had an appt to see him at 8 am before his first patient for the day.

I put my son to bed that night and held him for as long as I could. I had no idea what the world was going to be tomorrow. I knew it would change. I knew it wasn’t good. I knew there was more stress to come and this baby deserved none of it.

We got up, got the family ready to go. We’d sent S to spend the night at my mom’s so that we could focus 100% on B. We arrived and then we were taken immediately back. They’d not even taken time to stop and weigh/measure B. This, was an action that did nothing to decrease my anxiety.

We got into the room and before the nurse could shut it on the way out, Dr. Neuro and Dr. Development were on their way in, inviting the nurse to sit next to me. Dr. Neuro explained that he’d been concerned for a few week about the shape of B’s skull. To be on the safe side, he decided to to a CT and MRI. They let him now the night before that what he was looking for, was in fact there. He’d not seen the films yet, he wanted to get us in as soon as possible so we could form a plan.

He slapped the films up and as the light came on behind them, Dr. Neuro’s face blanched white and Dr. Developmental gasped. For the record, not seeing films before seeing patients is unfair to parents when something dramatic is found.

The cranial issue was obvious. It was a condition called Bicoronal craniosynostosis which is where both coronal sutures are pre maturely closing. It was responsible for some of the oddities in B’s appearance. His broad, almost non existent nose, his forehead being flat … a lot. The Dr’s expected to find that. The MRI had been ordered to make sure that there was no pressure on the brain from the Craniosynostosis. What the doctors did not expect was a brain that had not formed correctly. These malformations were so prominent, that me, who had never seen an x-ray of a child’s brain could see something was seriously wrong at the top and the bottom.

His frontal lobes had not developed fully. The Dr.Neuro explained it was called “Bi frontal lobe atrophy” and that in this case it did not mean a lessening of tissue, but rather a lack of tissue. It had never formed. The malformation at the back of the brain was one that was fairly severe but would hopefully not cause problems till adulthood. Arnold Chairi Malformation Type 1. The severity of ACM types is based on how many MM the brain is protruding into the cavity that is meant to be just that, a cavity. Had his been 1 MM longer, it would have been an ACM II.

He said that with the combination of the known delays that come with craniosynostosis, the already exhibited delays that B had shown, rather than waiting a year, as is often done, to start therapy we’d be put on an aggressive therapy regimen.

That day we were shoved into the world of Occupational Therapy, Speech Therapy and Physical Therapy. Given what they’d found the day before, they’d already set the appointments up. The doctor’s marched us first to the speech therapist. Explaining to the therapist the doctor explained that he’d been about 6 months old before he started to cry. And that we were having serious trouble getting him to eat food. The fact that ¾ of the food that he got down, came back up again, learning to eat right seemed rather urgent. I never knew that a child would need to see a speech therapist to learn to eat. I thought everyone just did that.

After speech therapy, Dr. Neuro was back and took us to the Physical and Occupational therapists. He introduced us, gave them a run down on his history as well as his diagnosis. He told them “we don’t know what to expect, give this child no ceilings.”

Dr Neuro hugged both my husband that night. I knew things were serious. He said to stop by the receptionists office on our way out for some paper work and information on what we were facing.

B went through a joint PT and OT eval that took 90 minutes. By the time we left, we were exhausted. We stopped to pick up McDonalds and then S. We went home. While Don fed the boys, I said I needed to take a bath. I did not know how I was going to get out of dinner but my stomach was in such knots, it wasn’t going to be happening tonight.

I ran the tub, and I climbed in, I cried like I’d not cried in a very long time. I cried more than when the boys had gone into the hospital. I cried more than when my son had had surgery. I cried more than I’d cried as a parent.

After about 15 minutes of sobbing as quietly as I could (so D couldn’t hear) I looked up and told God “there is no way that you can get this! No way you can understand how my heart is breaking. I know that you’ve said that you know all things that men face, but God, you’re not a mother! You can’t possibly know what it’s like to watch your child suffer the way I am and will be. “

As I finished my rant I looked over at the wall. A picture S had once found at a garage sale and that he’d placed so lovingly on the bathroom wall (even though I told him it belonged over his bed). It was a picture of Christ, with a crown of thorns on his head and a look of love for those causing him to suffer. It was the first time that I swear I could audibly hear the voice of God … “I watched my son suffer too”.





GOD SHARED MY TEARS

BY PEGGIKAYE EAGLER



When my heart was breaking,

And desperation was taking hold,

You reached down as promised,

Keeping my heart from growing cold.



You didn't lecture me,

Telling me to stand strong.

You didn't say 'fear not,'

Or tell me my faith was wrong.



I told you my heart was hurting.

My son would struggle all his life.

I could not bear the pain,

I begged you to end my strife.



You looked into my crying eyes,

Telling me to look into your heart.

You showed me that you'd hurt too,

I wasn't alone from the start!



A mother's heart can take so much

A breaking point it will reach.

Father, you understand that point,

And give comfort you don't preach!




The pain I felt, you understood,

Your only son you watched die.

My pain for my child not unique,

You share my tears,

And together we cry.

© Peggikaye Eagler