When a Mother becomes a Caregiver

I did not sign up for this…Caregiving. 

The gtube feeds, pushing needles weekly into his stomach just to pump medication that should stop the infections, the suppression medication, the antibiotics, the steroids, the constant weekly appointments, the coordination of care and 13 specialists.

I did not expect the doctors to argue over who had the bigger problem. Only to call and say, “these are your options.” “If he has an episode, I want you to know what will happen?” “Which problem do you think needs to take priority?” 

The pain. The pressure. It pulsates through your veins and wedges its way into every part of your being making it impossible to escape.

It’s in the heaviness that creeps into your eyelids, the lump that becomes apparent every time you swallow, the pressure that sits in your chest or the knot that resides in your stomach.

No mother should have to live this life. But life doesn’t work that way. 

There is a huge sense of guilt writing and feeling these words. How can I feel such pain around the one person who bought me a new lease on life?

Maybe because it’s not a this or that situation. My life is magical because I am his mother, and my life holds enormous pain because I am his caregiver. 

It’s ok to be blessed beyond measure and it's ok to break down because it is all too much. This journey does not come with a guide.

Take a breath. Find your community. Learn to ask for help. We (mother-caregivers) may not have picked this but we will get through this. 

What I Didn't Know...

What I didn’t know is that I would have to bathe you every night as you smack and push away. 

What I didn’t know is that I would have to feed you through a hole in your stomach that I prayed your surgery team would never have to place. 

What I didn’t know is that I would juggle a million calls, doctors, pharmacies, paperwork and school meetings just to give you what you need.

 

What I didn’t know is that we would spend our time heading to therapy instead of the ball field with your friends.  

What I didn’t know is that it was on me to medicate you, so the fear of an unknown world won’t wash away your smile. 

What I didn’t know is that everything in this typical world would be so dangerous for you. 

What I didn’t know is that I would spend more time than I imagined watching you endure through physical pain while I pushed back my tears.  

What I didn’t know was that you would never say my name.  

In all the things I didn’t know I was able to learn everything I needed to know… 

What I learned is that in the worst of times it would be you that held me.  

What I learned is that our dances, laughs and cuddles created joy in the most simplistic ways.  

What I learned is that through your genuine, pure and raw love is where I feel safe and at peace. 

What I learned is that your strength and perseverance would bring out a fight in me I never knew existed.   

What I learned is without you I would have never become me 💗

"It's better to feel pain than nothing at all"

 

    The reality show “Love is Blind” aired a conversation about abortion between two engaged participants. The female participant explained to her fiancé that “she would try again [get an abortion] if she found the unborn child had a birth defect like Down Syndrome.” After her fiancé disagreed with her stance she responded “I think its different for me. For me, if I knew that I could try again and hope the second time it’s better, then I would go that route, to be honest.” Later in the episode the issue was brought up to his family. After her fiancé’s sister asked her to explain further, she responded “I only believe that because of what I’ve seen. I specialized in Down syndrome.  I had kids that were medically fragile, so they have all sorts of medical illnesses. And for me working with so many children and the struggles that they went through and then seeing their families break down.”

    As a mother of a medically fragile child, hearing those words felt like a punch in the gut. It saddens me to think there are so many people in this world that still do not see the bright light children with medical complexities or syndromes bring to this world. If I could have a conversation with the participant this is what I would say:

    There is no greater love than the love I have for my Jude. Being his mother has caused me the most excruciating pain while simultaneously creating the most beautiful, selfless love. That being said, motherhood is not what I thought it would be. The appointments, paperwork, insurance and program denial letters and appeals, IEP meetings, hospitalizations, surgeries, illnesses, weekly infusions, maintaining g-tube feeds, safety awareness challenges and lack of support have overwhelmed and pushed me to my limits. In the darkest moments I have questioned my sanity, my abilities, and also society at large. Those dark moments always cause me to reflect. I think back on the moments and what I can always recall is a child who endures every situation with grace and an unbelievable perspective. Despite the entire world not being something he can “fit” in, he never gives up. He keeps going through severe illnesses, diagnoses and every setback while always comforting me with his arm around my shoulder. He keeps trying even though he will never be the best or win an award, he’s just trying to achieve a skill that most people do not think twice about doing. He does it because he loves being with his teachers, therapists, family, and being in his daily routine. Isn’t that something we should all strive for?  How many of us can truly say we do what we do without some sort of award, paycheck or praise surrounding it. Not too many.

    It has been in these times of reflection and epiphanies that I have found an unbelievable amount of strength and courage. Strength to realize what I deserve and what I can do for this world. If it was not for Jude, I would have never walked away from an unhealthy situation and married someone who loves both Jude and me. I would never have had the confidence to start my own small business, apply for a state council or start a blog. He constantly reminds me to live and appreciate every moment, even the small ones. Now I get to observe firsthand how his example radiates to others. His little brothers sit with him while he gets a bolus feed, take off his shoes and braces every day after school, and sing to him when he is sick in bed. It stops me in my tracks. A three- and four-year-old displaying that type of awareness and compassion is something our world so desperately needs and would have not happened without Jude.

    One of Jude and I’s favorite songs says “it’s better to feel pain than nothing at all. The opposite of love is indifference.” Pain is inevitable.  You can’t avoid it. If through that pain you can experience growth, strength, courage, compassion and awareness then isn’t a life with disabilities and medical complexities invaluable? Maybe we need to rewrite the narrative on disabilities. Let’s show the world how beauty and pain can coexist and the lessons it provides can change the world one person at a time!

How We Define Success

 

This past year has been challenging for Jude and his health. After COVID sent him into severe metabolic acidosis and hypoglycemia, he battled through two rounds of steroid treatments in 5 weeks to regain his health.  Then, he pushed through a nasty GI bug and four lengthy respiratory infections in 6 months. After all this, together with medication changes and weight issues, it was time to meet with his complex care team.  

In July the team and I reviewed his health since January. We had a lengthy discussion around his six illnesses in six months, each lasting two weeks or longer. Jude had worked hard for years to gain weight, but the doctor saw the up and down of weight gain and loss on the growth chart. I explained that during illnesses when we tried to feed him or get him to drink, he would shove, push and yell.  He simply did not feel well and couldn’t understand why we were forcing him. Knowing that Jude will never be able to understand that he needs to eat and drink, the doctor suggested getting a g-tube placed...again. Those words were deafening. I couldn’t quite process it. Jude and I worked so hard to get him to eat.  He went through so much-surgeries, therapies, pain. How can we be here again? My mind starting racing, I started thinking thoughts I am not proud to admit... “Did I fail him?” “Did I not fight or try hard enough?” “People will judge my decision as a mother.” I cried. I was really upset with myself. I consulted with 15q24 mamas and Jude’s doctors. Everyone agreed he needed it. Even though I knew he needed it their reassurance did not make me feel any better.  

With a lot of thought, reflection and guidance from my therapist and husband I realized I was defining success as not having a g-tube. When in fact his g-tube journey was and is a success. It has created a lot of growth in so many ways. He learned how to eat on his own when he was not expected to.  Then he went four entire years without a tube. Now he will have a tube that will save him from the stress while sick, the hospital visits and will let him show us how he can really eat and gain!  

Though it hurts to think about him going through this surgery on Tuesday and permanently having a g-tube; I am so incredibly blessed to have a son that has taught me to push out the noise and focus on what matters.  Jude, you are such a bright light in this crazy world. I am SO proud of how far you have come and I can’t wait to see what you will conquer next!  

Autism Awareness: The Magic of the Present Moment!!!!

A year ago, I listened to a podcast with Oprah Winfrey and Tim Shriver. Tim Shriver runs the Special Olympics. He described a conversation he had with a mother of one of his athletes. That conversation hit close to home and it is the perfect lesson for Autism Awareness Month.  It went something like this... “One mother told me, she had three sons... Two work at big investment banks and the other has a severe intellectual disability. ‘Every time people ask me about my sons, I tell them about my oldest who is in New York and I tell them about the second who is in Chicago. Then, I tell them about Christophe who is at home and I have to get out of bed every morning. They always say to me ‘I’m sorry.’ She said to me ‘Tim your life’s work is to tell them to stop saying that about my son. That boy is the light of my life and everyone thinks that I should be afraid and sorry that I have this boy. And he is magic!’”

Just like that mother, I have a special son who is the light of my life. Every morning, I get Jude out of bed and ready for school.  We walk down the driveway, hand in hand, waiting for his school bus. When the school bus curls around the corner and enters into sight, his body shakes vigorously with excitement and he runs towards the street. That moment perfectly describes HIS Autism.  Jude is always in the present moment, which sometimes that does not fit the world we live in. He is completely unaware that running into the street could cause him harm. Yet, he teaches me that getting to see his school bus is pure happiness because he will see people who care for him while going for his morning joy ride!  

We may not be able to engage in a verbal conversation with a person with Autism, but we can learn to use a different sense to connect with another.  We may have to follow strict routines to create a world where a person with Autism feels safe and comforted, but through those routines we are able to see how simple daily events can be just as joyful as a child mastering a major milestone.  When we take the time to truly see a person with Autism, we are able to understand that using their strengths and our strengths creates a much stronger and beautiful world.

Autism Awareness month is more than just learning a list of signs and symptoms or posting the newest statistics. It is about taking the time to become aware of the strength, perspective and vulnerability that people with Autism possess. If we all become truly aware of Autism, our world will be filled with magic J

The year you would of started Kindergarten

Dear Jude,

     Last Thursday, as we waited for your bus, we were joined by the neighbor kids who were preparing for the arrival of their school bus.  It was the first day of the 2018-2019 school year.  This would have been the year you started Kindergarten. I remember a parent of a special needs child telling me milestones, like Kindergarten, can be difficult.

     A few weeks ago, you got on the school bus and continued on the route. Afterwards, I sat on the front porch rocking your brother. Minutes later, your bus drove by, heading to school. As the bus passed our house, I saw you in the window.  You were smiling and looking with delight because you spotted our house. Instantly, I started to cry. Partly because we never got to enjoy slow days when you were baby, like I do with your brother. We spent most of our time fighting past illness and healing from surgeries and procedures. Mainly I cried tears of joy because I am so very, very proud of you. Every day, since you were 4 years old, you climb the big bus steps (with the help of practicing in physical therapy), greet your bus driver and aides with a smile, and ride 30 minutes to school. At school, you’ve learned and are continuing to learn how to communicate, master self-care skills, engage with other students, fine tune your feeding, and learn other skills that will help you become more independent. Most importantly, you greet everyone with your infectious smile and love of life. As a parent, I couldn’t ask for anything more.

     Though I appreciate the sentiment, that the year you would of started Kindergarten could of been difficult, it just isn't for us. As we stood on the driveway waiting for the bus, I stood proudly because you are doing exactly what you were meant to do...with that beautiful smile on your face!

Love, 
Mom