Moms Always Know - Happy Mother's Day!

I tried to tell anyone who would listen, "So, Joey's chest x-ray showed that his pneumonia was resolving, but isn't gone." 

"It's fine."

"As long as he isn't on antibiotics anymore."

"Anesthesia will talk to you on Friday."

I made phone calls. I told nurses, receptionists, doctors and surgeons. 

We've been down the anesthesia interview road before. Five times before. I tend to know how it goes.

"Has he been sick recently?"

"Any hospitalizations?"

"On any medications?"

I had a feeling that having pneumonia and being hospitalized just two weeks before this 3rd eye surgery was not going to fly with anesthesia, and it didn't.

Thursday afternoon I called in to find out our surgery time for Friday morning.

They said to arrive at outpatient surgery by 6:30 am.

"Did you get the results of the chest x-ray?" I asked. 

"Yes! Everything looks fine," the surgery scheduler said.

"Oh, okay. Well, I guess we will be there tomorrow."

One hour later the phone rang again.

"Hello."

"Hi, Mrs. Towell.  It's Andrea from surgery again. Um, they have decided to cancel the surgery."

I knew it, I knew it, I knew it.

The conversation went on and I found out that the next available date for surgery is June 21st and I also found out that our surgeon is leaving for the international program and that will be his last day of doing surgeries. Double whammy.

I then went on to find out we would have to re-do all the pre-op appointments we have spent the past two weeks checking off all over again in June. Another chest x-ray, another 4 hour afternoon spent driving to the Clinic and getting his eyes re-measured, another visit to the pediatrician's office, another cardio clearance. We have to do it all again. And round and round the we go on the carousel.

It is for the best. I know that. Tom knows that. We are thankful that the surgery scheduler also figured this out before we all arrived by 6:30 am on Friday morning. 

As most of us have known for a long, long time, moms always know.

My mom, sister and I.

As I have learned in the past 4 1/2 years, being a mom is the most fulfilling, most satisfying role I could have ever dreamed of having. I am so grateful that these two beautiful boys are ours and that they call me, mom.

My beautiful Grandma Betty.

Hope you are enjoying your mother's day as a mother, grandmother, daughter, sister, son, brother, child--- after all--- we all have a mom and we don't always have them for as long as we hope to. Hope you are each making the time you do have with your mom count.

We love you, Mom!

My mom and I circa 1976 is my awesome Holly Hobby outfit.

Pneumonia, A Hole in Our Heart and Eye Surgery #3

I'm so behind on writing that it is hard to know where to start. We work so hard to help Joey gain acceptance that I feel like I should not ever complain or groan about raising these two precious boys. And yet, today I am tired. Today I am weary. Today my back hurts and I have a killer sinus infection that I let go way to long because there just wasn't any way to get in to see my doctor while I was sleeping on a mini pull-out bed in Joey's hospital room. And that is part of being a mom. A mom of any child. Not just a child who has Down syndrome. Being a mom means that while you may have your day planned to the exact second of each hour, when a baby is sick you just stop it all. You put life as you know it on hold and go into your Warrior Mama mode. 

Did I mention that it is a privilege to get to do this? Honestly, as much pain and as much stress and worry being a mother causes--it is all worth it. The first night Joey was in the hospital I rocked in a chair next to his bed and I prayed and thanked God that I had the privilege of being able to be with my baby and that I have the privilege to be his mom. Joey got sick shortly after the Boston Marathon bombings and with that as well as the little ones from Newtown, Connecticut and the tragic death of Robert Ethan Saylor always in my mind-- I was grateful that I at least get to be with my babies.

So, a couple of weeks ago, Joey wasn't feeling so hot. On Monday he was grouchy and had a runny nose. No fever, a slight cough, nothing major. That night we went to a friend's house down the street for dinner. Tom worked late, so it was just me, Tommy and Joey. Right as started to dig into the yummy dinner Beth made, Joey started to hack and cough and hack and cough. Next thing I knew he was projectile vomiting all of his dinner all over me and him. Now this is when you know you have a very kind friend. Their entire family acted as though nothing was out of the ordinary as Joey vomited all over the place and her husband took their daughter and Tommy outside to dine al fresco while we mopped up the Italian dinner. Did he aspirate during his coughing fit? I don't know. It's one of the working theories we have.

The next day was supposed to be a big day at preschool. People from Akron Public Schools were coming to observe Joey in his school environment.  There were papers I needed to sign. I was going to drop off the kids early, work out, then head back to the school to meet with everyone to watch Joey and then we were going to head to Springside where I teach spinning every Tuesday at noon.  

At about 8:15 am Tom made the call that Joey was in no shape to go to school and I made frantic phone calls, sent texts and emails trying to cancel and find coverage for everything I had planned for that Tuesday.  Joey and I hung out at home all day where he was again, not himself, but didn't seem to be totally out of sorts. That afternoon we kept his scheduled pre-operation assessment with our pediatrician who said that Joey was either in the process of getting sick or getting rid of something.  He signed off on all of Joey's pre-op paperwork and there was never another vomiting incident. I thought that surely he must be in the process of getting better.

The next day he was still not 100% himself, but I thought he was on the road to recovery, so we had my friend and her two little ones over for a playdate. Joey was even grouchier after his nap, but still no fever, a runny nose and general grouchiness. The kids played and I mostly held him.

People ask us-- how did we know he had pneumonia. It's a great question. To be honest, we had no idea. 

However, after his bath on Wednesday night, his hands and feet started turning dark bluish-purple and his teeth were chattering. Within minutes he started to get really, really hot and suddenly his breathing was very ragged and very, very slow. I mean, like imagine time standing still. He would take in a ragged breath and then Tom, Tommy and I were all staring at him waiting for him to exhale. 

It was scary. It was horrible. We literally thought he was going to stop breathing. Tom's parents made it over to our house in record time and I had Joey bundled up in the car and I sat in the back seat praying he would not stop breathing. Why didn't we call an ambulance? I don't know. I don't think at the time we thought there was time to wait for one.

We screeched into the ER and found out that when you tell them that your child is having a hard time breathing and has a heart condition they take you very seriously and very quickly. The nurses and doctors were wonderful. I cannot remember the name of the pretty, dark haired ER nurse, but she was wonderful. She told us, "I would bet a million dollars that he has pneumonia." 

Pneumonia? In April? Huh? It had never even crossed our minds that Joey might have pneumonia. They did breathing treatments, shot him full of fluids and antibiotics, did a chest x-ray that confirmed that he did indeed  have pneumonia. In the midst of all this they also started him on oxygen as his O2 levels were hovering around 82. 

I also found that while getting the ER room directly across from the nurse's station is very convenient (it's our second time in that room this year) it is also so they can keep a very close eye on your little one.  Did I mention how scary this night was?

When the resident came in and told us they were admitting Joey I teared up, but to be honest, I also felt a huge amount of relief. A children's hospital is a very sad place at night. It's an amazing place, but also a little sad. 

The first 36 hours were the worst. Joey was getting fluids and antibiotics, but was not yet talking, signing or eating or drinking on his own.

We finally got him to sit up on his own for a little bit. Since Thursday was supposed to be "purple" day at school I had Tom bring Joey's shirt I had laid out for him to wear so he would at least be with his friends and teachers that he loves so much in spirit.

While Joey slept I read the little book I just received--"What I Want You to Know" by R. A. Hudson. It's described as a book for new parents of a child with Down syndrome, but I think it is perfect for any parent of a child with Down syndrome.

Here are two of my favorite pages:

I needed those pages as a reminder of how strong Super Joe is and how much he has taught us about perseverance, love and humanity.

Slowly, but surely, our little Super Joe started to feel better. He started with graham crackers (same food that worked back in January when he was in the hospital) and a sip of chocolate milk. Then our nurse brought in some toys and I knew our little man was starting to feel like himself again!

By Friday he was much more like himself and I knew we would be going home soon, especially if Joey had anything to do with it.

But our journey at Akron Children's Hospital wasn't quite finished. When we were being admitted we were asked our religious preference and I always say Catholic and ask if there is a priest who visits. On Thursday, the Chaplain on staff visited with us and prayed with me and Joey. He apologized for not being Catholic and I told him it didn't matter!  The prayers and company were incredibly comforting. 

On Friday, while Tom was with us, a beautiful petite woman with dark hair came in and introduced herself as Mandy with Quinn's Crusade. She offered us Holy Communion and we prayed with her and I asked her about who Quinn was. This is when I found out what a real Warrior Mama is-- and her name is Mandy and she is Quinn and Camden's mommy.  Her precious Quinn had Junctional Epidermolysis Bullosa- Herlitz in which her skin would literally break down to the touch.  As it says on their website, there is no cure. This is a death sentence and most children who have EB do not live to their first birthdays.

As part of Quinn's Crusade, Mandy and other volunteers bring Holy Communion and comfort to children and families every Friday. Quinn's Crusade is raising money to help build a chapel inside the Amplantz Children's Hospital at the University of Minnesota (where little Quinn lived almost her entire short life along with her parents and brother who moved there during her treatment).  

Photo of Quinn from http://www.quinnscrusade.org.

I cannot begin to explain what it meant to meet Mandy and to hear about Quinn. From the minute she was with us she said, "This is not about Quinn- I want to be here for you and your son." But we wanted to know. We wanted to hear about Quinn. We wanted to learn more. Mandy is an amazing Warrior Mama. To have the strength to do what their family does to continue giving back is incredible. The comfort that Mandy brought to us was so kind, so gentle and so incredibly selfless. I asked her after we talked if I could give her a hug and thank her. 

If you would like to learn more about Quinn's Crusade or donate to their work, please visit here. 

Thank you for sharing your time, love and compassion with us, Mandy. It was such an honor to get to meet you and learn about Quinn.

A Hole In Our Heart

I thought I would be able to finish updating all of Joey's latest adventures today, but there is just so much going on right now that I can't get through it all.

This Monday, after Physical Therapy and a chest X-ray that showed his pneumonia is resolving, we had a 3 hour cardiology visit with our wonderful cardiologist Dr. Khan. 

The cardiology visits are intense. They are very long and the echocardiograms are tough.  We had many of those while we were pregnant with Joey and many more before and after his open heart surgery. 

As it stands now, his ASD repair is looking good. His mitral valve still leaks, but there is not a large amount of increased pressure, so he is looking good. His blood pressure runs high every time we are there, but we can't figure out if that might be white coat anxiety.

This time during the echo one of the things the echo tech said stood out-- he pointed out a PDA to another tech. 

My ears perked up. PDA? Huh? That doesn't sound right.  That hole closed long ago.

Or not. Turns out, Super Joe's PDA has re-opened. And as is often the case with our super hero, it's very rare and highly unusual. Another thing to be monitored. 

Eye Surgery #3

Tuesday was spent at the Cleveland Clinic Cole Eye Institute and Joey is scheduled for a third eye surgery on Friday to determine whether or not he does have Brown syndrome in his right eye and if he does they will be placing  a "spacer" in the tendon.

I have some doubts that this surgery will happen. I am worried that the anesthesiologist might pull the plug. I have tried to voice my concern. I called the clinic, I told the doctor on Tuesday and I had our pediatrician's office fax up the latest x-ray report. 

We will see what happens! Either surgery will be stopped by anesthesia and we will re-do this pre-surgery dance of multiple appointments and pre-op assessments. Or- they will go in and he won't have Brown syndrome.  Or- they will go in and he does have Brown syndrome and they will operate on the tendon.

Okay-- with that-- if I don't get the chance to write again-- Happy Mother's Day to all the moms and grandmas. Thank you to my mom for all of her support and love and words of wisdom.  Thank you also for taking my multiple phone calls daily and for always listening to my latest worry. Love you, Mom! 

Have a wonderful week and cheers to all of the Warrior Mamas in each of you!!!  If you think about it-- please say a quick prayer that Joey's third eye surgery is the one that works and that he has a quick visit in and out of the hospital.

You Knew You Were Having a Downs Baby and You Didn't Terminate? How to Respond to Rude, Crude and Crazy Comments

"You knew you were having a Downs baby and you didn't terminate?"

I swear, this is a direct word for word quote from a conversation I had just a few weeks ago. Sometimes things like this take me time to digest. I tell my mom about them. I tell my husband. I tell my best friends and then I kind of put it in the back of my mind for awhile until I can actually digest what transpired. This post could have easily been titled "Crazy shit people say to me without thinking", but that seemed a little extreme. And yet, that is what goes through my head when people say things like this. It's not every day. It's not every other day. It's usually about once a week. Sometimes I can go two weeks without something this crazy. . .and then I see this little boy and I completely come apart and don't understand why or how anyone could ever think such a thing, let alone say such a thing out loud to his mommy.

Dorothy and Joey hanging at the juice/snack bar.

The thing the scares me the most is the source of this comment. This came from a highly educated and worldly individual. The entire conversation was surreal. They said, "Tell me more about Down syndrome."

I said, "It occurs when an individual has an extra copy of the 21st chromosome, thus trisomy 21. The person has three copies of the 21st chromosome instead of the typical two copies most people have."

They said, "I knew that. I just wanted to hear how you said it."

Awkward pause.

They said, "Now, you knew when you were pregnant?"

Me, "Knew what?" 

Those were the words I spoke, but inside my head I was struggling to remain standing up and not drop the phone. I knew in those surreal few seconds exactly where this conversation was headed and I did not shut it down because I was in shock. In my head I thought, "There is no f-ing way you are about to say what I think you might say."

They said, "You knew you were having a Downs baby and you didn't terminate?"

Me, "No. We did not terminate. Joey is sitting in the kitchen right now."

Inside my head a million thoughts and reactions were sprinting through. Thoughts like, "If you only knew how many times we were asked if we wanted to terminate. If you only knew how scared we were to have a child with a disability. If you only knew the struggles we went through when we were told at 13 weeks Joey would never survive a pregnancy and we should just end it before it was too late. If you only knew how I almost didn't have the precious baby who is sitting right here, right now because of people like you and people who scared the crap out of us about having a child who has an extra chromosome. If you only knew."

But I can't say things like that in moments like this one. I have to be unfaltering in my strength. I have to be strong in the face of ignorance. I have to stand strong and try to continue to show the world that one extra chromosome is absolutely nothing to be afraid of.

The craziest part of this story is that this happened not only once, but twice. TWICE! Within weeks! The second person who asked me almost the identical question was a mom of a child with a disability. You could have knocked me over with a feather. We met at a wine bar and started talking about kids and when she found out about Joey and how we knew before he was born that he has Down syndrome she literally said, "You knew he had Down syndrome and you didn't terminate?" 

Is it a Down syndrome thing? Is this what the general public thinks about Down syndrome? I am trying to figure it out and I am having a really hard time. How do you respond to a comment like this? 

The Incredible Tommy and Super Joe at the hospital checking Joey's thyroid, CBC, RBC, WBC.

The thing is-- and there is a thing. The thing is that having a child with specialized needs comes with stuff. It just does. There is stuff. Some days the stuff isn't really that much. Some days the stuff is too much. Parents of children with special needs don't want you to feel sorry for us. We don't want you to feel sorry for our children. We would like people to know that there is a lot of "stuff" going on. For some of us it is multiple doctor and therapy appointments. For others it is medical equipment and specialized support gear. For some it is serious illnesses and prescriptions to manage and keep track of. For others it is trying to figure out our child's schooling or job. There is stuff. For parents of kids with Down syndrome there is a variety of "stuff" at any time. For almost 50% of us there are congenital heart defects to worry about. For at least half of that 50% there is heart surgery and a lifetime of care making sure our children don't ever get too sick or put too much stress on their hearts. 

Super Joe leaves nothing behind. 110% every day!

Then there is the issue of cognitive, language and verbal delays. This is stuff. Stuff we think about constantly in the back of our minds even as we try to navigate the regular every day stuff that everyone has. There is always the leukemia and dementia and Alzheimer's stuff that also haunts the back of our minds. We try to live one day at a time and appreciate every single second without letting that stuff fill our minds and hearts with worry, but it is almost always there in the back of our minds-- some of the stuff.

There is the concern of whether or not our kids will have friends. Will they fall in love? Will they live on their own, in a group home, in an apartment, with friends, with family, with us? Will our kids have a job, enjoy their job and feel fulfilled. This is the stuff we all worry about with all of our children regardless of special needs. However, for those of us who are parents of kids with extra needs-- this is more of the stuff we think about. That we worry about despite our most positive attitudes and most sunny outlooks. See, we have to be strong. We have to be strong for our other children. For our families. For our spouses. We have to be the one who says it will all be okay no matter what happens. We will manage the stuff.

I read the following article just a few days after my insane "termination" encounters, but I literally printed it off and put it in my purse. I have memorized a few favorites such as, "excuse me", "why do you want to know?" and "why would you say that?". What I love about this amazing list from one of my new favorite blogs, is that these can be used in all sorts of uncomfortable or awkward situations! 

One of my dear friends has beautiful children who have amazing and beautiful names and she is constantly getting remarks about their names-- this is perfect for that. Nosy strangers? Pick one of these! Intrusive comments? This is your list! This is from the Friendship Circle Blog: Special Needs Resources for Parents & Educators.

How to Respond to Unhelpful Comments: Top 10 Comeback Lines For Individuals With Special Needs

It happens sooner or later to just about everyone who lives with a disability: someone will say something nosy, rude or truly offensive.

It may help to have a response prepared for that day.  Having that comeback line at the tip of the tongue gives a little edge of confidence that actually prevents people from saying rude things in the first place.  Here are ten simple responses that work in real life situations.

See also 10 hurtful comments from relatives about your child with special needs

10. “Excuse me?”  Miss Manners says that this is always the most polite response.  It causes the person with the original comment to pause and re-think his words.  If he repeats the rude comment, simply repeat in a sweet voice, “Excuse me?”  Keep going with it until the light bulb switches on.

9. “I’m sorry that my (or my child’s) permanent disability has caused you a temporary inconvenience.”  One of my buddies uses this line, and it is a conversation-ender.

8. “Thank you for your concern.”  With a smile.

7. Silence.  With a smile.  And walk away.

6. “Why do you want to know?”  Sometimes it is necessary to answer a question with a question, especially when you are cornered by a personal question on a delicate topic.

5. ”Why would you say that?” Force them to think about what they just said.

4. “Nothing is wrong with her.  Is something wrong with you?”  Ask with genuine concern, without sarcasm.  Often the person is asking because of a family member with a similar condition.

3. “Yes, he can talk.  He can also hear and understand everything you say about him.” For just a little guilt trip.    

2. “I respectfully disagree.” 

1. “I have (or my child has) an equal right to be here.” This is the line I’ve been saving all these years – but I’ve never had to use it in any of the many, many awkward public situations I’ve found myself.  My belief in equal rights is what makes me stand taller.

What is your standard response to unhelpful comments or questions?