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A Pool Called Bethesda

Wednesday, July 28, 2021

When Bert was diagnosed with Cerebral Palsy back in April, one of the biggest challenges we faced was finding supports in the community. This is a different post for a different day, but it really surprised us that a doctor could tell us our son has CP and we would not immediately be provided with a list of things to do or support groups to join or activities for disabled children. We had to do a lot of work to actively seek these things out, and, indeed, we hit a lot of brick walls when email addresses we were given for groups and activities would come back undeliverable and websites would be defunct. 

One group we learned about was called AngelFish Georgia, which is a swim instruction group for children with disabilities of all kinds. We learned through the website that the instructors are specially trained, and what we read all sounded very promising. I didn't see a summer schedule on the website, so I sent an email to the email address listed, inquiring about the schedule and if there might be a spot for Bert. 

The next morning I happened to be up very early; I can't even remember why. But I woke up to an email response from the director of AngelFish. It sounded almost too good to be true: the director was so welcoming and encouraging, the cost was very low, and the information the director provided was thorough. The director informed me that lessons were held at a pool located in a local park called Bethesda. For the first time since Bert's diagnosis I felt hopeful about a community we could become a part of, but I still felt a little apprehensive since, again, it sounded too good to be true. 

After reading the email, I opened my Bible, hoping to get my day started off right. I opened to the Gospel of John to begin reading where I had left off the day before. The scripture that morning was this:

After this, there was a feast of the Jews, and Jesus went up to Jerusalem. Now there is in Jerusalem at the Sheep [Gate] a pool called in Hebrew Bethesda, with five porticoes. In these lay a large number of ill, blind, lame, and crippled. One man was there who had been ill for thirty-eight years. When Jesus saw him lying there and knew that he had been ill for a long time, he said to him, "Do you want to be well?" The sick man answered him, "Sir, I have no one to put me into the pool when the water is stirred up; while I am on my way, someone else gets down there before me." Jesus said to him, "Rise, take up your mat, and walk." Immediately the man became well, took up his mat, and walked.

- John 5:1-9 (New American Bible, Revised Edition read in the Blessed is She Bible

A pool called Bethesda ... a large number of ill, blind, lame, and crippled ... Jesus said to him, "Rise, take up your mat, and walk." 

I couldn't get through it without crying, just as I can't get through it without crying now. I just knew God had His hand in this, and it was yet another reminder that I might love my son more than anything, but God loves him more. 




The Birth of Hank

Monday, July 26, 2021

Sitting down to write Hank's birth story is a funny exercise because it couldn't be more different than Bert's, and we still can't believe it. 


If you remember Bert's birth story, parts one and two, or you were part of our lives during that time, you may remember that he arrived at 39 weeks after my water broke at Home Depot, and my labor was long and arduous. Bert's heart rate kept dropping throughout labor, and the only remedy was me lying on my side in a weird and uncomfortable position, not being allowed to move at all, not even to sit up for two minutes to put my contact lenses in. That labor was followed by Bert being born at a low body temperature, with jaundice and polycythemia, the last of which would cause him to go on to be hospitalized at Children's Healthcare of Atlanta for several days during his first week of life. His blood sugar kept crashing, and he failed three hearing tests in the hospital. In short, there was nothing about Bert's labor and delivery that wasn't terrifying and difficult. Of course, if you've been part of Bert's story since that time, you also know that he was diagnosed with Cerebral Palsy in April, after having had a diagnosed global development delay since he was nine months old. 

After all of that, Joe and I were pretty terrified for Hank's labor and delivery (and life!), to put it mildly. 

We had an extra long time to be scared, as Hank wouldn't budge and had no intention to! My mom came down to stay with us and care for Bert right before I turned 39 weeks. We figured, well, Bert was born at 39 weeks and typically first children come later, right?

Wrong. 

And honestly, I should have known better. Bert constantly moved moved moved in my belly, and Hank barely ever did. I mean, he moved enough that I knew he was alive and safe, but mostly he was just always curled up. I had at least five ultrasounds for various medical reasons this pregnancy, and in every.single.one. Hank would not cooperate. In fact one ultrasound tech told me that Hank was "the most uncooperative baby" she had seen in a while. He was just always curled up and didn't want to be bothered. 

So he was not going to be bothered to come out either. 

I went to my weekly appointments, everything was fine, Hank and I were both healthy. 

So we all just kept on waiting. 

On Friday, June 18, when I was 40 weeks and 4 days, I saw my doctor, and she said she'd see me again Monday, when I'd be 41 weeks, and we'd reevaluate then. She said I could go all the way to 42 weeks if I wanted. I held steady over the weekend, and when I went in on Monday everything still looked good. Joe and I had discussed it over the weekend, and we decided to do an induction on Wednesday, checking into the hospital on Tuesday night. I do believe that letting babies come when they are ready is best, and there were a lot of factors that went into this decision (that involved no pressure from my practice), and I was super nervous about making the right decision. But the reality was that Hank had to come out sometime. And a major factor that went into our decision was that the wonderful Rachel was working Thursday and Friday, so if we had a baby Wednesday she'd be the person who cared for us both days during our stay. And knowing she would be there gave us so much peace. 

So we checked in Tuesday night at 8 p.m. (after a delish dinner of Chick-Fil-A!) The induction medication was given to me at 9:30 p.m. and the plan was to leave it in till 9:30 a.m. Joe and I both got some sleep, and I woke up around 7 a.m. I went to the bathroom and put my contacts in, then as I was lying back down in bed the contractions started. I watched the clock, and they were coming every three minutes. So the nurse took the medication out around 7:30 a.m., my water broke on its own, and I got my epidural shortly after. Joe and I played trivia (and he also said some crazy nonsense). The contractions spread out, so I got some Pitocin. (I also found out one of my favorite nurse midwives from my practice was on delivery that day, so I was pretty excited.) I was 9 cm dilated, but that's when things stalled out, and I kind of hung out in this limbo for awhile. Although Hank's heart rate dropped a couple times, it was not nearly the crazy crisis that Bert's situation was, and just some simple position changes helped him. Around 3:30 p.m. Joe and I were both listening to some music on our respective phones. I had been given a little extra medication from anesthesiology so I felt just fine. My nurse midwife came in and checked me ... still at 9. Then she told me that Hank was in a weird position; his face was facing sideways. Then she got my nurse (who was also awesome) and was like, "You know what? Let's just try a push on the next contraction, and we'll see what happens." She gave me a quick pushing tutorial, and we went for it on the next contraction. Quickly, both my midwife and the nurse were like -- "Yep, okay, stop. Get everyone in here. It's time." And Joe and I were like, "Okay?" So I basically had to hand Joe my phone and earbuds, and he put them and his own stuff aside and stood up and came over, and I kid you not, Hank was born a few minutes later after three rounds of pushes! My midwife was like, "Man, we could have done this in two if he weren't facing the wrong way!" So I basically went from I'm listening to music on my phone to look I'm holding a baby in about five minutes. There were a couple concerns about Hank's respiration rate (too high) and his blood sugar (too low) over the next several hours, but, again, nothing was nearly at the level that Bert's concerns were. His respiration rate lowered, his blood sugar regulated, he passed his hearing test on the first try, his bilirubin levels were fine. 

In short, nothing happened. No drama at all. 

Joe and I repeatedly looked at each other and said some version of, "This really happens? Like people go to the hospital, have an easy labor, deliver their babies with little trouble, and they're fine? Like, they just go home?" We are honestly still in shock about the whole thing. 

We left on Friday and just ... went home. When he saw his pediatrician on Monday, she said, "Hank is 100 percent healthy." Joe and I have never heard that from a doctor about one of our children before. 

So that's how Hank got here!

***
 
As I read what I wrote above, the immediate word I think of is "boring." I feel like the writing is sub-par, and the story is boring. I mean, it's exciting that Hank has arrived, but overall that story is not at all compelling. But I feel like, in reality, it really was, so I couldn't figure out what was wrong. 

And then something happened that made me realize why. 

A week after Hank came home from the hospital, I had to take him to the Saturday hours clinic at our pediatric practice because he had a little issue with his umbilical cord. (Okay, so maybe Hank did have one small health hiccup, but, and it has to be said, Bert had this same issue, but his resulted in a visit to the surgeon at the children's hospital and a chemical burn, and Hank's ended in his issue going away, so, once again, easy peasy.) I had to drive Hank there by myself because Joe had to be with Bert. I got in the car, hooked up my phone, and hit "play" on iTunes. A song came on, and I started tearing up. I couldn't figure out why, and then it hit me... 

The last time I had listened to music on my phone was minutes before I delivered Hank, so my phone automatically started playing the last song I had been listening to. That song was "The Fighter" by Gym Class Heroes. This was the last song I heard before Hank arrived, and hearing it took me right back. As I listened to it, I realized: the story of my labor and delivery of Hank is not really the story of how Hank got here. The story of Hank's arrival into the world is really about the choice we made to have him. 


The first week we took Bert to his adaptive swim class, I learned that his classmate who has Down Syndrome had a 5-month-old sister. I also learned about other families of children with Cerebral Palsy, Down Syndrome, and rare genetic conditions who also have children younger than the child with the disability. I told Joe I was so inspired by how these families chose to have more children even after their first child was diagnosed with a disability. It just gave me so much hope because the reason you chose to do that is hope. Then I was like, "Wait a minute. That's us. We did that too." Although Bert wasn't officially diagnosed with a disability until I was about seven months pregnant with Hank, we knew Bert had a developmental delay and required physical therapy months before we decided to try for another baby. 

As I listened to "The Fighter" while driving Hank to the doctor that day, I cried because I realized -- that's me. I am a fighter. And it's okay for me to be proud of myself for that. 

During the first trimester of my pregnancy with Hank, I spent tons of time on the phone with various people, fighting for Bert to receive in-person therapy instead of virtual. I would be lying on the couch while Bert took his afternoon nap, not napping myself, but making phone calls. Then I'd go throw up pasta while trying to take a shower because I couldn't make it out of the shower and to the toilet in time. During my pregnancy I took Bert to Atlanta (40 miles each way) to see his neurologist. One of those times Joe was out of town, so I drove him myself (at rush hour). Both of those times, I took Bert inside to his appointment by myself because the doctor was enforcing a one-parent-only rule due to COVID. At the second appointment, I was alone while I was told by the doctor that my child had Cerebral Palsy. Until Bert learned to walk in April, I carried him everywhere. I loaded him in the car and took him back out again. I lifted him into shopping carts, his bed, and the bathtub. I carried him up and down stairs. I carried him into doctor's appointments and physical therapy. I took care of him alone when Joe would go out of town for work. Every single OB appointment I had -- including ultrasounds -- I went to by myself because Joe was not allowed to go due to COVID rules. I took Bert to his MRIs, and before that, I fought to get the children's hospital to allow both Joe and me to accompany him (COVID again). I called several cord blood banks, trying to see if any of them would offer us free or lower-cost banking of Hank's cord blood because of Bert's CP. I filled out the paperwork needed for that. I sought out, obtained, and filled out over 60 pages of paperwork to apply to get Bert extra health care through the state, which required driving papers to his pediatrician to fill out (which I was doing after Hank's due date had already passed in order to meet a firm deadline). 

All pregnancies are hard. All parents work hard for their children. I believe both of those things. But when I think back to my pregnancy with Hank and all I had to do and go through, I think: that was HARD. And that was me. Me. I did that. I got up every day and did that. 

And THAT is the story of Hank. It's not really about his labor and delivery. It's that we ever chose to bring him here to begin with. 

Give 'em hell, turn their heads
Gonna live life till we're dead
Give me scars, give me pain
Then they'll say to me, say to me, say to me
There goes a fighter
There goes a fighter
Here comes a fighter 
That's what they'll say to me, say to me, say to me
This one's a fighter



Father's Day 2021

Sunday, June 20, 2021

Last year Bert and I bought these matching shirts for him and Joe for Father's Day. This year, Bert is big enough to wear it!


In the past year, Joe was told his son had a motor development delay, so Joe asked what he could do to help Bert. He was told Bert needed OT and PT, so Joe took him (and continues to take him). He learned from the therapists what he could do to help Bert at home, so he got what Bert needed to work with him. He got the orthotics, he went to the MRIs, he takes Bert to swim therapy class, and he encourages him every day. Joe has never once complained, felt sorry for himself, or acted too proud to have a son who needs extra help. He just does what needs to be done. It’s because Joe is humble, he’s kind, he’s hardworking, and he loves us a lot.

For Father’s Day this year, Joe got take out because his wife is expecting a baby (last week 🙄). He got no special trips or events or meals. But he acted like it was the best day ever. It’s not true, it wasn’t, but Joe is the best dad ever. Bert (and the other one) are so blessed God sent them to Joe. They will never know what it’s like to have anything but the most loving, giving, fun, adventurous, humble, helpful dad.

Father Jack

Thursday, June 17, 2021

Bert says several words that he associates with church: God, “cheech” (church), and Jesus. (I attribute this to divine intervention as well as the fact he was born on the feast day of Saint John Vianney and definitely not to anything Joe and I have done. 😂) Lately, though, when talking about “cheech” he has begun saying another word that sounds like “dack.” Honestly, it sounds like what he says for dog and duck, and I have been struggling to figure out how dogs or ducks fit on a list with God, church, and Jesus.

Until yesterday.

As he was reciting his litany: God, cheech, dack, Jesus, I finally realized … “dack” is “Father Jack” the  outstanding priest at our amazing church, Saint Monica. I love how Bert smiles when he knows we have FINALLY realized what it is he’s been trying to tell us all along: God, church, Father Jack, and Jesus. (In that order, I’ll add!)



Diaper Fairy

Tuesday, June 15, 2021

(I received a complimentary bag of Pampers Baby Dry diapers from Pampers US and Influenster in exchange for a fair and honest review. All views expressed are my own!)

A week or so ago, I turned to Joe and said, “So I guess we’re waiting for the diaper fairy to show up” because we were (still are!) expecting a newborn baby any moment and had not purchased one. single. diaper.

Turns out the joke was on me, as my mom showed up with a bag of Pampers size newborn and a couple days later I received a bag of Pampers Baby-Dry size 1 diapers in the mail. So I guess diaper fairies do exist?


For Bert’s daily wear, we buy the Members Mark diapers from Sam's Club. However, Bert, being the angel that he is, has been sleeping 10-12 hour stretches through the night for a long time now, and a regular diaper just can’t get the job done. For overnights, we turn to Pampers Baby Dry. They keep Bert totally dry all night long and prevent any wet pajama or bed sheet mishaps, which make for a more peaceful morning. We plan to have baby brother follow the same plan … when and if he ever gets here. 🙄

Oh, and the pic of Bert at 1 month old shows how well the diapers fit … and how not well his clothes fit since he was just so dang long! 😂


Gifts for Expectant Moms

Wednesday, June 9, 2021

My life can be boiled down to one main thing right now: waiting.

I feel like hanging a sign around my neck that says “I feel okay. Yes, I’m still pregnant. No, I don’t know when he’s coming.” 😂 What’s funny is that baby 2 isn’t even due till Monday, so I’m not even late! But Bert came at 39 weeks, 1 day, so this is officially the longest I’ve ever been pregnant.

While I’m waiting, I thought I’d write a little something about gifts for an expectant mom who is still in this late third trimester period of waiting. A year ago I wrote a piece on nine things new moms need at home, but today’s mini-list is specifically for moms whose babies aren’t here quite yet and who could desperately use a little pick-me-up.



Here’s my advice:

- A convenience bag. I didn’t even know this was a thing, but I happened to see one last month on Amazon. Essentially it’s a bag that holds everything a new mom would need for the hospital: shampoo, conditioner, deodorant, toothbrush, toothpaste, etc. ALL IN ONE BAG! Now she doesn’t have to assemble one herself. I got mine on Amazon for less than $20!

- Meals! Sure, it’s great and very much appreciated to take new moms meals after the baby is born, but my friend Lyndsey brought us a meal last weekend, and man did l appreciate it. My worst, most exhausted time of day is dinnertime to bed time, and not having to think about dinner is GREAT!

- A gift card for a haircut. If you know where mom likes to get her hair cut, get her a gift card! Who knows when she’ll have time to get her next cut after baby gets here, so giving her the gift of one now is priceless.

- A gift card for a pedicure. Not only does the water and relaxation feel amazing, but frequently mom’s feet are swollen both before and after pregnancy, and it can make her feel so much nicer to look at those puffy, swollen feet with some pretty polish. If she has a place she likes to go, perfect. If she doesn’t or you don’t know, research something with good reviews close to her house!

Moms, what would you add? 

The Meaning of "Brave"

Tuesday, June 8, 2021

I hear adults call children “brave” or “fearless” all the time when they easily want to do new things as little ones — things like jump into the pool, slide down a big slide, or swing on the swings.

I think it’s just as brave when a child listens to his or her own body and heart and is a bit more tentative at first to try something new.

Bert is an active child for sure, but it takes him a few exposures before he is comfortable trying something new like pools or slides or swings. It’s just his personality, the way God created him. And it’s a fine way to be. It doesn’t make him any less adventurous, brave, cool, or fun.

Parents of other children who bravely listen to their bodies that say “not yet” at first — your kids are brave too. How many of us as adults don’t listen to our own guts sometimes?

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