Category Archives: Family

The Sweetest Word

For 6 years I have waited.

I have prayed.

I have dreamed.

In my dreams, I hear your precious voice. I feel the joy in my soul and pride in my heart with every spoken word. But, sadly, I awaken to see you sleeping and I know that it was just a dream. Sometimes, I  wipe the hot tears of sadness from my face as I squeeze you tightly and wish one more time, that one day, I will awaken to the sound of your voice.

Last night was different. As I lay next to you knowingly wide awake, the two of us, I heard it. The first word. It was just 3 little letters in a brief, fleeting moment. It was slow and deliberate. I quickly pulled out my camera and asked you to say it again. You spoke the word, beamed with pride, reached out for a hug, and then slowly drifted off to sleep.

As the video replayed, my heart leapt from my chest and I felt the familiar feeling of hot tears rolling down my face, but this time…this time, they were tears of joy. Never has the word “Mom” sounded so sweet and meant so much. This time, I cried myself to sleep happier than ever.

Lest I think it was a fluke, today, I have asked you time and time again, and every time I hear you say “Mom”, my heart melts.

You have had many sounds for so long, but today was the first time they held meaning. The first time you looked directly in to my eyes and said what I have been longing to hear. The first time they were more than a button on your iPad. As I listened to your baby sister coo and babble, my heart hurt thinking she would reach this milestone before you. You have worked so hard for so long, and today, that hurt was replaced with a renewed hope that soon, we will hear all of the words you have been waiting to speak. All the words we have been waiting to hear.

 

[The following is compilation of videos I have taken from last night and today. The first video is from last night, when Braxton first said “Mom.” The other clips are from throughout the day and include us talking and making other sounds so you can see the differentiation between his sounds and the very deliberate, “Mom.”] ❤

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Finding Strength You Didn’t Know You Had

“Your blood work came back abnormal. These levels indicate your child may have Down Syndrome, so we are going to send you for a higher level ultrasound and we may need further testing like an amniocentesis ….”

The fog rolled in and the genetic counselor’s words sounded more like the teacher in Charlie Brown. I sat there, stunned, mouth agape, thinking, “I’m only 20 years old. I don’t even know how to be a parent, much less the parent of a child with Down Syndrome. How am I going to do this? What do I do?  I’m not cut out for this. I can’t do this.” I’m brought back to the sound of the genetic counselor’s voice as she’s explaining my “options.” Wait, what? Adoption? Abortion? This is MY baby we’re talking about. I’m not just going to get rid of her. And in that moment I knew, Down Syndrome or not, I was going to tackle this head on.  My daughter was born without any complications and without Down Syndrome.

Fast forward almost 5 years later and in walks the neonatologist and she slowly starts to explain “Your son has some interesting characteristics like a flat nasal bridge, thin philtrum, webbed fingers, and a significant heart murmur. On their own, these things aren’t usually anything to worry about, but when they present at the same time they indicate some type of syndrome….”  And cue the teacher from Charlie Brown. I’m speechless, what is happening? I’m vaguely listening to the doctor and as she tells me he is going to have to be transported to another hospital for further testing I feel the tears rolling down my cheek. I see my significant other jaw clenched, tears welling over. Our whole world rocked, in an instant. As she leaves the room we look to each other and start the “What are we going to do?” talks and wonder how we’re going to explain this to everyone. “I don’t even want to say anything about this on Facebook” he says. We have no clue what is going on, terrified that our son is being transported away from us all while I’m still stuck in a hospital bed. 14 hours post c-section I was walking around my room and 36 hours later I was discharged.

Over the years, our journey has taught me that I possess more strength than I ever thought possible. If you had told me 4 years ago, after that neonatologist left, that one day I’d be sharing my story and helping others on the journey I probably would have laughed in your face. Me? Me, who didn’t want to share anything with my friends or family on Facebook would be blogging, giving presentations, and helping others? Yea, right. Except, that’s exactly what happened.

Somewhere along the way I found the courage to tell our story and from that has come the most amazing opportunities, friendships, and healing. I have now become a mom who can walk with others on the journey and help them see hope even in the most hopeless situations; help them find the strength they didn’t even know they possessed.  I don’t pretend to be superwoman and I don’t want anyone to think that of me either. I’m not superwoman. I’m just a mom. A mom whose love for her child would move Heaven and Earth before giving up. Just like any other mom.

A few weeks ago, I witnessed the other side of the coin. I have accompanied families to appointments before, but not a single one jolted me back to that hospital room when the neonatologist flipped our world upside down like this one. I attended a genetics appointment with a family to take notes and help them figure out the next steps after receiving the diagnosis. Only, I wasn’t fully prepared for what happened next. As the doctor delivered a diagnosis I was unfamiliar with, I opened up Google on my phone and began researching then and there. Then, like a ton of bricks in an article –

This disease is always fatal. Most patients die before the age of 10.

The words blur together as I try to continue reading. I’m frantically searching for “success stories.” No, this can’t be right. I’m finding support groups, blogs, Facebook groups, calling in the troops – this family is going to need incredible support. Then, as quickly as it came, I’m brought back to the room and focused on the doctor’s words. He hasn’t told the parents yet. He’s trying to break the news easily and when he finally gets to it, they break down. Here come the tears, the cries of “How are we going to do this?” “This isn’t fair.” “I can’t do this.” “I don’t know what I’m going to do.”  The doctor proceeds to explain more about the disease. The parents are frozen. I step in with some questions. I’m frantically taking notes. When the doctor leaves the room, the parents are visibly shaken. I give mom a hug and tell her that she’s not going to have to go through this alone. I share in their grief. I tell her that she is going to have the strength to do this. I tell them to go home, take it all in, cry, scream, break stuff, grieve in their own way and when they are ready we can tackle this, together.

A few days later I check in with the family and send them my notes from our visit. I let mom know that I’m ready and willing to help as soon as she’s ready. By the next week, the family has started a Go Fund Me and Facebook page. Mom has made contact with a doctor in Chicago for further diagnostic testing and to begin participation in a clinical trial. I am in awe of this woman and this family. This mom who didn’t think she could do this has already moved mountains in a short amount of time. I am reminded that strength comes when we least expect it and often when we ourselves don’t think we even have the strength to keep breathing. 

The love a parent has for a child is the ultimate source of strength. It is the love for my child that kept me going when I thought my daughter had Down Syndrome, when I refused to stay in the hospital for the required 72-hours post c-section after my son was transported, when the geneticist finally delivered his diagnosis to us 2 years later, and it is the love for a child that I have seen move mountains for this family. If you are a new parent hearing a difficult diagnosis for the first time or a seasoned parent entering unknown territory, just breathe. You WILL find the strength and everything is going to be okay.

 

 

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The Worst Part of “Non-Verbal”

Braxton fell yesterday.

I didn’t see how it happened.

It’s not the first time he’s fallen and I didn’t see it.

But, this time it was different. Only I didn’t know it.

Today I got a call from the school nurse.

Nurse:  “Have you seen Braxton’s foot!? ”

Me:  Panic sets in.  “His foot?  Um, no?  Why?”

Nurse:  “He hasn’t been wanting to walk today -”

Me:  “Oh yeah, I told his teacher that. He’s had a sinus infection and we think his balance is off, he’s been a bit more wobbly than usual.”

Nurse: “No, I think something is wrong. His foot is swollen, he won’t bear weight, and he cries when we try to move it.”

Mommy guilt immediately sets in.  How did I not notice?  He had therapy this morning, none of us noticed.  How in the world did this happen?

Oh, right,  Braxton fell yesterday. I didn’t see how it happened.

He fell, I heard a thud followed by a cry. I jumped up from the couch to check on him.  He was sprawled on the floor with his head against the wall.  I thought he hit his head.  I checked for bumps and bruises. I checked his eyes.  No vomiting or loss of consciousness, we’re good.

I didn’t check his foot. I didn’t even think to check.  He had no words to tell me to do so.

This morning he had therapy.

He didn’t want to climb the stairs.  In fact, he stiffened his leg and planted his feet.

We thought he was just being stubborn as he often does.

In hindsight, I remember thinking he has  sure been crawling around more than usual.

I remember realizing his balance was off, more than usual.

I remember seeing him drag his foot as he walked.

I saw it but didn’t Piece it together.

I should have noticed. What kind of mother doesn’t notice?

The kind of mother with a child who cannot express hurt and pain.

This. This is the hardest part of having a non-verbal child.

The part where they can’t tell you where it hurts.

The part when the doctors look at you like you’re a terrible mom when you say “my kid hurt himself but I don’t know how or where. something is wrong, please help me. ”


The part where your child’s pain tolerance is so high he doesn’t flinch when the doctor tries to see where it hurts.

The part where they end up taking 10 X-ray’s to check out the whole leg because he can’t tell us what part hurts.


The part where I feel helpless.

The part where I feel like I failed my child.

The part where the doctor says “Well, we didn’t find anything. Just keep him off of the foot.”

The part where I can see there is something more, but he can’t tell me and the doctors.

Of all the things I wish for my child, the one I wish for something fierce is a voice.  Words to tell me when he hurts. Words to tell me when something is wrong.  He’s not proficient with his talker yet, so that can only help so much.  Days like today are frustrating.

I wish I could say I’m glad it wasn’t worse, but what if it is and we missed it?   Braxton is clearly in pain when he  tries to walk.  His foot turns outward and he kinda drags it behind him.

But the doctor says nothing is wrong. All they saw on the X-ray is a hip issue we knew about where the hip joint didn’t fully form.  Is that why he is limping now? Did the fall somehow exacerbate that?    I don’t know. The doc thinks so, but can’t say for sure.

I wish Braxton could tell me. I wish I could make it better like a mom is supposed to.  This is the only part of my son’s condition I regularly wish away.

 

 

/// Post Update:   A few days after writing this we noticed a bruise on Braxton’s big toe. We had already scheduled an appointment with our Orthopedic Doctor. When we went for the appointment I let the doctor know we saw a bruise and some swelling at the big toe. He took a better look at the x-rays and found that Braxton had a small buckle fracture in the big toe. There was something and we almost missed it completely. He’ll be in a boot for 4 weeks.  We also found some other congenital anomalies that we did not know about before, but there is not anything we can do about them now, we can only watch them and be prepared should this happen again.

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When Being His Voice Hurts

There was a lot of hand-over-hand help, but Braxton enjoyed coloring his project.

There was a lot of hand-over-hand help, but Braxton enjoyed coloring his project.

Braxton came home with an assignment this week- to fill out an “All About Me” Poster. I looked at it and thought how fun it would be to work with Braxton helping him color it in and gluing pictures to show his classmates. All the standard questions were there, My name is ___, I am __ years old, I live in ___, and then there is a space for Braxton’s picture, and finally I get to “I want to be a ___ when I grow up.” I mentally filled in the blanks for all of the other questions as I looked it over, but when I got to that last one I paused.

I don’t know what he wants to be when he grows up.

 

Questions like that make me sad for a number of reasons.

For one, I don’t even know what I would “make-up” as a realistic answer because I don’t know what he will be capable of in the future. Sure, parents tell their kids that they can be anything that want to be and we don’t ever want to crush their dreams, but as a parent of a child with special needs I feel a greater responsibility to make sure those dreams are realistic. I want to always set my son up for success and one of the ways I can do that is by giving him attainable goals. Even if they are out-of-reach they should still be attainable, meaning that if he really worked hard and everything fell in to place, it could be possible. Picking something out of the sky hardly seems fair.

Secondly, I think what hurts most is  when I realize that he lacks the ability to answer for himself when it comes to likes/dislikes, preferences, goals, dreams, etc. Even if what he wanted to be when he grows up is unattainable, he can’t even tell me what that dream might be. I don’t know if he wants to be fireman, a teacher, a doctor, the president of the United States, or any other profession. And I feel completely guilty when I have to pretend that I know what he would say.

There is a big difference in speaking up for him and speaking for him. I will always speak up for Braxton because I am his parent and advocate. I will be his voice to make sure his needs are met and to be certain that he is treated with kindness and equality. Speaking for Braxton diminishes him as an individual and inhibits his ability to think for himself. Just because he cannot tell me what he wants to be does not mean that he does not have a dream for his future. Speaking for him could eventually send him the message that what he has to say is unimportant and not only will he stop thinking for himself, but he will then lack all motivation to speak for himself. I don’t ever want Braxton to feel that way, which is why speaking for him, even in what seems like meaningless situations (like a class assignment), brings on so many mixed emotions.

Braxton has made incredible progress with his Augmentative Communication Device, but he is still not able to fully express himself like I would like to see. I know that he will get there eventually and I’m so glad that we have given him the tools he needs to be independent in his thoughts and expressions. But, until he gets there I struggle with how to handle speaking for him when it is called for and how it may or may not impede his ability to speak to us later on.

So, how did I end up answering the question?

While I have no clue what Braxton would like to be when he grows up, I think we can all agree that whatever it is he decides to be, he will be totally and completely AWESOME!

When I grow up

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An Unexpected Setback

Braxton had a follow-up Swallow Study today and we got some unexpected news.

A few weeks ago we followed up with our Sleep Doctor/ Pulmonologist and I mentioned to the PA that Braxton had recently started making a strange noise while he was eating, like he was clearing his throat and then swallowing his food. I didn’t think much of it until we were at the appointment and something told me I should tell the doctor about it, considering Braxton’s history of aspiration (swallowing liquid into his lungs). The PA was concerned enough to talk to our main pulmonologist who decided we should order a new swallow study. She also listened to his lungs to make sure they were clear, and they were.

Here is a video of what we were seeing:

 

We didn’t make any feeding changes and I made sure to talk to our Speech and Occupational Therapists, we were all stumped. Our Speech Therapist thought it could have something to do with all the ear trouble we have been having this summer since the ear and throat are all connected. It would certainly make sense if swallowing was hurting his ears and he was trying to relieve the pressure or whatever it is he was feeling. He still seemed to be swallowing normally and wasn’t showing any signs of aspiration, so we continued with our current feeding regimen.

IMG_2347Today we finally had the swallow study. I went in not expecting much of anything, but we may have a new issue to worry about.

During the test the speech therapist and the tech kept saying they saw Braxton regurgitating the food which is part of the reason we are seeing multiple swallows and the throat clearing. There were also a couple instances where it appeared he *might* be aspirating again. He was surprisingly calm and cooperative the entire time, so aside from the Barium not being so tasty, he did exactly what we would see at home. Once completed, we sat in the waiting room while the speech therapist and tech reviewed the recording to discuss their findings and recommendations with us. It took much longer than it has in the past.

 

The speech therapist finally came out and let us know that while she is not able to give us an official diagnosis, what she was seeing appeared to be an esophageal dysfunction. When you eat, your esophageal sphincter opens to allow the food to pass and then it closes so that air does not enter. Braxton’s upper esophageal sphincter is sometimes opening properly and other times it is opening and closing before his food gets to the esophagus. And there are times that the esophagus regurgitates the food which gives him trouble with swallowing. She also noted that even when everything works properly he is taking two or more swallows per bite.

So, now we need to figure out what exactly is going on with his esophagus. We’re looking at some kind of structural anomaly that we haven’t seen before. The speech therapist said she’s never seen what she saw today with Braxton. She also called in another radiologist who also said she’d never seen this. (Of course! Braxton has always been quite the medical mystery).  The plan for now is continue with oral feeds, but she was insistent that we proceed with caution since we don’t know what is really happening. We will need to cut back on his food and give him smaller bites since he did seem to tolerate that better than the larger bites. She will also be making a recommendation for us to get back in to the Aerodigestive Clinic so that our ENT, GI, Pulmonologist and a Speech Therapist will all be able to see him at the same time so we can all discuss what’s going on and formulate a plan.

I’m really not sure where we go from here, but obviously, this was not the news we were expecting. This could explain why we have had some difficulty getting Braxton to move up to thicker foods and different textures. Cutting back on feeds will certainly be a setback we didn’t expect. But, like all things, I know we will make it through.  I hope we can get some answers and clarity very soon. And to think I almost didn’t even bring it up to the doctor!

I am doing my best to stay away from Dr. Google today and patiently waiting for a follow-up with our doctors. Braxton and I enjoyed some time outside this afternoon on his new swingset. His sweet smiles and laughter filled my heart, and for a moment all was right in the world.

 

IMG_2346

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