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“I think he already knows I’m different,” I said to my mom as I was playing with my then almost three-month-old nephew as she was holding him in her lap. I know the statement caught her off guard because she told my sister what I said later that day. Normally, my friends and family know that if there’s a big event that happened, I’ll write about it in the next month’s journal entry. I was fully expecting to write about becoming an aunt in my July journal entry, but that didn’t happen.

It’s commonly known that little most little girls dream of becoming a mother. They play with baby dolls and pretend to be a mommy. I was no different. I had many dolls and I enjoyed pretending to be a mommy. Obviously, as I grew up, I realized that the becoming a mother wasn’t as easy as it once seemed. It wasn’t until my younger cousins and best friends started getting married and having babies that I realized becoming a mom probably isn’t in the cards for me. My love for teaching and little kids makes that reality even a harder pill to swallow.  Personally, I think it’s one of the hardest parts about having a physical disability.

When my sister got married, I knew she and her husband probably would eventually have kids. On a Saturday morning last November, she texted me, “I have an idea of what you can get me for Christmas.” Not thinking anything of it, I casually texted back, “Great. What?”  She sent me Amazon link to the book, What to Expect When You’re Expecting. Of course, I texted back congratulations right away and asked when she was due. After the news set in, I’d be lying if I said I wasn’t sad. Don’t get me wrong, I was over the moon for my sister and her husband, but selfishly, I was feeling sorry for myself.

The holidays were right around the corner, and I knew she would announce it to our extended family. They announced it to a small group of people at Thanksgiving. For a few seconds I had to compose myself. Again, very selfishly, it’s not the easiest thing to witness everyone super excited over something you desperately desire, but know will likely never happen to you. I tried to hide my tears as much as possible. Having said that, though, my sister and parents understand why things like these are emotionally challenging for me. That’s part of the reason why my sister told the other side of the family before we got together for Christmas. My sister sacrificed the excitement of being able to tell people in-person to make it easier on me. I feel awful she does that with so many things, but I truly appreciated that one.

As I have talked about in previous entries, I lived with my parents the first three months of the pandemic. Understandably, my mom was beyond excited to become a grandma. Her excitement was overwhelming at times. Sometimes, all I could do was go in another room. I couldn’t help but think that if circumstances were different, I would have had her first grandchild. That said, my mom continues to be the only person I can talk to about how I feel. It was very hard for her because she was so very excited, but, yet, she knew I was having a hard time.  I feel bad for her because she has to see so many situations from both sides.

My first nephew was born in mid-June.  My brother-in-law texted his sister and I sharing the exciting news. My mom got to finally send the text to the extended family that she had been waiting to do announcing the birth of her first grandchild. Admittedly, that text got to me. As happy and excited as I was for my sister, I couldn’t help but wonder if I’d be a mom if things were different. Due to the pandemic, nobody could visit them in the hospital. My parents went down and saw him the day after they got home, and my parents took me down to see them the next weekend. I was so happy that I was living back in my apartment by then, my parents could have that first visit alone. When I went to visit, I tried to prepare myself because I knew it’d be kind of challenging for me emotionally, but I desperately wanted to be excited for my sister.

I’ve been lucky to see my nephew four or five times since he has been born. Each time, I recline my wheelchair back and my sister sets him on my lap multiple times. In the beginning, we used a bopsee pillow to help support him, but now he’s big enough that he can lay on my arm pretty good. I know he will grow up knowing about my disability because my sister and brother-in-law will talk to him about it. Will there be a time period where he’s scared of me because I’m different? Likely. It happens with most little kids, but we’ll work through it.

There was like a 10-day time period right around the birth of my nephew that six of my friends announced their pregnancy on Facebook. It was unbelievable! With my emotions already spiked, seeing that didn’t help. Again, I’m so incredibly happy for all of them; it’s just hard knowing I’ll likely never get a chance to experience that. I admit, those were some tough weeks which is why I decided to wait to write about this topic.

The feeling of selfishness makes a person feel even worse in situations such as these. I feel bad really for feeling sad about other people’s joy. It’s an awful feeling. However, I’m slowly beginning to realize it’s an unavoidable part of life. I will always have the yearning to be a mother. That’s part of being “normal” enough to have that desire. Do I still feel sad when I see friends and family enjoying life with their children? Absolutely. I don’t think that feeling will ever go away. I’m slowly working on ways to try to deal with it.

When my sister heard what I told my mom that day, her response was, “that may be true, but you know what? He’ll grow up knowing you, so, to him, you won’t be different.” If that doesn’t sum up the meaning of family, I don’t know what does!

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.

Each year, WalletHub publishes a report ranking the best and worst cities in the US for people with disabilities. The overall ranking is based on three categories : Economy, Quality of Life, and Health Care. Scottsdale, AZ and St. Louis,  MO ranked best. Milwaukee and Madison made the top 100.

Read the report

A report from the Governor’s Task Force on Caregiving, presenting their policy recommendations, is now available. The report details the process and recommendations developed to address the charges in Executive Order #11 and  improve conditions for family caregivers and paid direct care workers.

Read report

The American Association of People with Disabilities (AAPD) has published a nonpartisan policy report COVID-19 and the Disability Vote, urging federal, state, and local governments to take immediate action and ensure that voters can cast a ballot safely, accessibly, and securely in the 2020 general election. This report explores how COVID-19 has both created and worsened a variety of accessibility barriers that disenfranchise voters with disabilities. 

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As the pandemic continued, the American with Disabilities Act turned 30.  Many people think one thing became clear - - reality falls short of the law. COVID-19 has made clear health care rights for people with disabilities are far from equal. There are several different examples of this.. This article explains some of the problems. 

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As we all know, there is a presidential election coming up in November. In any election, voting often present challenges for many people with disabilities. Add a pandemic to the situation and the challenges are even more. Everything from voting place accessibility, to not getting accessible mail-in ballots, there are many issues for people with disabilities. 

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ACL's National Paralysis Resource Center (managed by the Christopher & Dana Reeve Foundation) is announcing a new funding opportunity for organizations and agencies that serve people living with any type of paralysis. A special $300,000 Quality of Life (QOL) grant program was just created to address social isolation during the COVID-19 pandemic. As we all continue to practice the COVID-19 safety guidelines, we must remember social distancing becomes harmful when it turns into social isolation. The goal of this opportunity is to enhance connectedness of people living with paralysis and their caregivers to their communities in combating social isolation. 

They seek to support programs and projects to:

• Connect isolated individuals and foster engagement and connection (examples may be virtual support groups, online activities to support stress management, online adaptive physical activity and health promotion programs, art sessions, gaming, and more);
• Adapt services or create new services to support family caregivers;
• Facilitate connection through the use of technology (such as increasing Internet access, technology loan closets, and more);
• Provide opportunities for online volunteering;
• Strengthen or build social networks; and
• Provide access to tools and resources to help people remain connected and engaged.

Quality of Life (QOL) grants are federally funded through a cooperative agreement with the U.S. Department of Health and Human Services, Administration for Community Living (ACL). Organizations that have previously been awarded a Quality of Life grant in any category may re-apply for funding one year following the close of their grant and notification of grant closure by the Reeve Foundation.

Submit Letters of Intent to QOL@ChristopherReeve.org with the subject line “LOI: COVID-19 Grants.” Selected organizations will be invited to submit a full application.

The National Paralysis Resource Center anticipates awarding six to 10 grants within the range of $25,000 - $50,000. Letters of Intent are due October 13 and full applications are due Wednesday, October 30.

Visit the website for more details on this funding opportunity.

The Foundation is no longer able to provide individual pre-award assistance either by telephone or email. However, they welcome questions about the application process to QOL@ChristopherReeve.org.

In 2002, AAPD launched the Summer Internship Program to develop the next generation of leaders with disabilities. We place college students, graduate students, law students, and recent graduates with all types of disabilities in paid summer internships with Congressional offices, federal agencies, nonprofit and for-profit organizations within the Washington, DC area. During the summer, each intern is matched with a mentor who provides them with career guidance. AAPD provides interns with a living stipend, transportation to and from Washington, DC, and fully accessible housing. We recruit a diverse cohort of interns. As a result, we connect our host employers to talented emerging leaders with disabilities.
 
Apply for the 2021 AAPD Summer Internship by Wednesday, October 28, 2020 at 5:00pm ET.

Through the AAPD Paul G. Hearne Emerging Leader Awards, the American Association of People with Disabilities (AAPD) recognizes outstanding emerging leaders with disabilities who exemplify leadership, advocacy, and dedication to the broader cross-disability community. Two (2) individuals will each receive $2,500 in recognition of their outstanding contributions and $7,500 to further a new or existing project or initiative that increases opportunities for people with disabilities. The recipients of the 2021 AAPD Paul G. Hearne Emerging Leader Awards will be honored among national disability leaders at the 2021 AAPD Leadership Awards Gala which will be held virtually in Spring of 2021.
 
Apply for the 2021 AAPD Paul G. Hearne Emerging Leader Award by Wednesday, October 28, 2020 at 5:00pm ET.
 
AAPD will host a Zoom webinar on Thursday, October 15 from 4:00pm to 5:00pm ET for any interested applicants to review the information below and answer any questions you have. ASL and CART will be provided. Register here for the webinar.