Disabled Parenting

Little girl in unicorn dress standing on porch

Disabled parent is a thing. I keep saying that but mainstream society isn’t listening. When my daughter was first born I struggled with finding accessible products for me as a mom with a disability. Most of my google searches gave me products for children with disabilities.

Guess what people? Disabled kids grow up to be adults and many of them have children. They still need accessibility products to care for their children. I made do like I’ve always had too. My family and friends helped me adapt things to fit my needs.

COVID hit and the world shut down. We all stopped going out. I used online shopping or curb side pickup. My daughter was no longer in daycare as I worked from home.

My daughter is 3 now and world has opened up. My mobility is less then before and my chronic pain is worse. Staying home so much not moving around has not been good on my body. As I venture out with my daughter, I’m reminded that the world doesn’t think much about parents with disabilities.

The search for preschool was fun. Conversations were had with a few schools. I shared my needs as a disabled parent it was frustrating. I was looking for accessible parking and accessible access into the school. Stuff that they are required to have by Federal Law. After talking with one school they never emailed the promised paperwork. It didn’t surprise me from the conversation that was had with them.

We found a preschool and they have been great with requests for accessibility. Extra curricular activities have started. I’ve started to encounter inaccessibility again. Parking and entrances are a problem. Now I need to strategize on how I manage these things. I have a little girl who is excited about going back. How much do I push for change vs just dealing with it?

My actions now affect more than just me. So I’ll take the relationship building path. It’s good but takes much more time then just directly addressing the issue. The outcome is sometimes better. I’ve learned there is no easy solution to dealing with inaccessibility.

Child Car Seats & their Inaccessibility

I just spent the last few weeks researching in detail car seats for my 7 month old. Yes, you may say this is normal thing to do. However, my research is different then the average mom. I have no arms but have hands attached to my shoulders. My hand strength is one of a twelve year old. I’ve spent most of my life using my feet for things that require reaching. So naturally I use my feet when caring for my daughter. The more I encounter baby products the more I find inaccessibility. The one item that stands out as the most difficult is the Car Seat!

Each time I express my concern with car seats within the disability community mothers and fathers alike tell me it by far is their biggest challenge.  This is so frustrating to hear. As parents with physical disabilities manufactures are not even thinking about us. As new parents our isolation is compounded due to our disabilities. Some would say ask for help. My answer is, “How would it feel to you if you need to ask for help to leave your house every day if that wasn’t how you usually lived your life?”

There needs to be change! Car Seat manufacture need to think about accessibility but without the added cost. I’ve had few recommendations but the cost was ridiculous. I’m told you pay for it being easier. Its not about being easier it about accessibility!  I would love the opportunity to meet with manufactures who are interested in making their products accessibility to the largest growing population in the world the disability community.

Our little girl is here!

On June 27, 2019, at 10:25 am our little girl Raya Hegarty was born. She was delivered by C-section at 34 weeks. I had preeclampsia and so it was important to get her delivered sooner than later. The last two months has been both amazing and one heck of a challenge.

The Wednesday night before delivery the hospital inserted a central line in my neck for IV access. That was quite a challenging experience and affected some of my mobility over the next week. I then had a blood transfusion in order to make sure that my platelet count was high enough for my morning C-section. The most challenging part of the transfusion was how cold I felt throughout the process. Being awake for the birth of our daughter was very important and so I needed to have a spinal block. One of my concerns was not being able to feel my legs especially since they are so important to my independence. Honestly, I was so focused on the birth of Raya that not feeling my lower body with the least thing  from my mind. After she was born I went to sleep and by the time I woke up the effects of the spinal were over. The C-section incision didn’t hamper the use of my legs as I feared. That first night with the help of a friend I somehow manage to transfer into a wheelchair and go see my little girl in the NICU. Once I got up there, I took my foot reached up to her bed and put my toe in her little hand. The nurses and my friend were amazed of what I was doing within a day of a C-section. It never crossed my mind to do anything differently. Why wouldn’t I touch my daughter first with my foot they’re my hands.

Two months post birth we are all doing amazing! As a mom with a disability  I am caring for our little girl just like any other mom. I dress, carry, feed, burp and change her diapers independently. Getting her in out of the car seat and in the car has been quite a challenge. However we have succeeded in figuring out how to do that as well. With the support of my husband, family and friends I am the mom I always thought I could be. I know as time goes on there will be more challenges, amazing adventures and spectacular successes! I’m looking forward to all of them.

Yes, if any of you are wondering I’m writing again and there will be another book.  I don’t know how long it’ll take but I started it. I’m thinking it will include the challenges of getting pregnant, the pregnancy, birth, and probably the first six months to year of Raya’s life.

Life has changed!

I’ve not done much blogging over the last few years as my life has been a bit of a roller coaster. Since marrying my husband in 2015 we’ve been trying to have a child. Well this dream has come true and I’m currently 27 weeks pregnant! However, it has been probably the most difficult experience in my life to date. The difficulty has occurred because of my disability and the ignorance the medical world has with disability.

I’ve been to countless doctors and had way too many tests. I’ve had clinics turn me away because of my low platelet count six months after I had told them about about my disability. I’ve had cardiologist tell me one thing and give a completely different message to my OB/GYN. I’ve also had labs tell me they could not do a blood draw for me because I don’t have arms and they can’t do out of my leg. That is just some of the medical ignorance that I’ve dealt with while trying to get pregnant.

Since getting pregnant my age and my disability have created some challenges with doctors. I’ve learned that local hospitals do not have platelets on hand. My doctors have been very concerned about my platelet condition. So I’m required to have my baby in Boston in order to be able to have platelets if I need them. I’ve come close to needing a platelet transfusion two already because of getting two colds this year but luckily  my platelet came back up. I still need to meet with anesthesiology to figure out IV access, medication and anything else that you usually put in a person’s arm during delivery.

Our little girl is doing great! She’s growing as expected and the doctors do not have any concerns about her. Every morning I wake up to my husband snuggling next to me putting his hand on my tummy. He waits for her to move. If he doesn’t feel her, she gets a few pokes to get her wiggling. Each time I get overwhelmed by the medical stuff I try to sit back and focus on her.

I’m so excited for this adventure that we are starting a couple and scared out of my mind. We’re about to be responsible for a little tiny human. It’s a bit mind blowing. I will also be a mom with a physical disability and there will be challenges to that.  But just like everything else I have ever done in my life I know I’ll be good at this one.  I have an amazing supportive husband right next to me.

Life Updates!

It has been sometime since I posted. I’m happy to say that I made it through this harsh cold winter. I realize this was a difficult season for many but as the snowstorms continued I realized how having a disability affected my ability to go out. I found myself staying at home. I was extremely thankful that my job continued to cancel work because of the harsh conditions outside. Even after the storm stopped going outside was a concern.This winter definitely tested my limits and had me asking for help. As they get older I have learned that asking for help is okay. So as this winter was difficult the early winter brought the publishing of my book and the end of winter brought my engagement!

The spring is bringing lots of wonderful fun energy to my life. I attended my first archery class and am looking into waterskiing. On the professional side book sales are soaring! I just did a relaunch of my website if you haven’t seen it already please take a look.

That is all for now.

Medical Advocacy

This past fall I went to a conference in Boston and one of the panels spoke about medical care for people with disabilities. This made me realize that as a person with a disability it was important for me to stay up to date on my medical care. This promoted me to make my annual exam. I realized something that was not happening for me when I went in for regular doctors appointment was getting my blood pressure checked. This particular task is a bit of a project for me as I do not have arms and need to have my blood pressure down on my leg. When I was in graduate school I had a horrible experience with nurses who did not how to take blood pressure on me. And even worse were trying to make me go on medication when they didn’t know what they were doing. As it turns out they were not taking my blood pressure correctly and that is why it was perceived for me to have high blood pressure. That experience taught me to educate myself more about blood pressure and doctors responsibilities.

After that I did educate my doctors about blood pressure and how to do it on me but for some reason in seven years my blood pressure had been taken only once. I don’t have concerns about it but high blood pressures is in my family so it really should be happening especially since it’s a standard thing to do at an annual exam. Apparently though it is not a standard thing to do if you have a disability. So I went for my doctors appointment this week and I told them you haven’t taken my blood pressure in six years. The nurse was apologetic and then proceeded to justify why they hadn’t done it. They probably were too embarrassed to ask you how. The bigger question for me is why are they not educated. I except that with my disability I tend to have to teach the world how I do stuff or how things get done for me and I guess at a doctors appointment it’s no different. That day I taught the nurse how one does blood pressure on a leg. Explained to her that you can’t just use any cuff and I need to be laying down otherwise I will probably have high blood pressure.

For me this is then just a minor thing to have to deal with but other people with disabilities deal with more major issues. It is 2013 people with disabilities are not getting adequate medical care because of ignorance and lack of education. When I listened to the panel on medical advocacy it was outrageous the things that have happened to other people with disabilities around medical care .At this point in my life I’m thankful for the amazing medical care that I’ve received. I am also thankful that I have the ability to advocate for myself and have been able to avoid some major issues. We need to remember the doctors don’t know everything and as a patient we have the right to question them. They need to be able to give us informed information about our care. They also need to be providing us with the same care that they get every other one of their patients regardless if that means they need new equipment or education.

I love the positive thoughts of this poem!

A short poem I wrote.

—

I am more.
I am more than the colour of my hair.
I am more than the clothes and shoes that I wear.
I am more than a number on a scale.
I more than whether my skin is dark or pale.
I am more than the religion I believe. 
I am more than the pocket money I receive.
I am more than whether I’m a girl or a guy.
I am more than whether I’m loud or shy.
I am more than the acne on my face.
I am more than just a country, just a race.
I more than my grades at school.
I am more than how popularity deems me cool.
I am more than the accent I have.
I am more than a ‘posh snob’ or a ‘chav’.
I more than the wheelchair I ride.
But you cannot see that…

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The 4th World Youth Taekwondo Camp

Over the last week I have had the chance to experience some fantastic opportunities. I was invited back to South Korea to speak at the 4th World  Youth Taekwondo Camp. There were approximately 300 people from 30 different countries at the camp. Through out the week I was approached by many youth who had seen my story on television and were inspired. I was part of a special lecture series and had the chance to inspire youth.  I had several encounters with the local media far more than I ever expected. I made friendships with Olympic medalists and trained with Taekwondo Masters from all over.  I was also was reminded of my own limitations despite my determination to succeed. 

Our, myself and Danielle, travel to the camp was long as we had a 14 hour air flight to Korea and then a three-hour bus ride to our hotel in Muju, South Korea. Upon arrival we went straight to sleep for we had a full day training the next day. The arrangements that we had in Muju were beautiful the view of the mountains from the room was amazing. Since we got in so late, breakfast was our first true opportunity to meet the other participates. We meet a mother and son from Jordan and got to hear her son’s journey to the camp which was not the easiest. I also found out that my story had made a difference in his life.

Before we knew it we had arrived at the training facility and gathered together to train.

Throughout the day I had the opportunity to train with the participates. At times I joined the students and trained within the group this was enjoyable and at other times I assisted with the instruction of the students. We did a stretch and kicking drilling (Kyorugi) together. During the first training day I meet an olympic medalist, Tran Hieu Ngan the silver medalist at the 2000 Sydney Olympic games, she was extremely friendly and we hung out the rest of the week. I was also asked to speak with the press. This was quite the experience as I sat in a room with about ten reporters it was like I was having my own press conference. I was in awe about how my story had impacted so many people all over the world.

The following day we had the special lecture series and had the chance to experience Korean Traditional Culture.

Through the special lecture series I was given the chance to speak to the participates about my story. I was also able to inspire hope and enthusiasm in the youth. As speaker I always try to inspire my audience in finding their inner strength. I spoke about how we all have our own challenges and with those we are all here today. Taekwondo is a sport that gives opportunity to the many and what we learn in Taekwondo we can then take and apply to all the parts of our lives.

It really was an honor to speak at the camp. I feel that I made a difference in the lives of these youth. I hope the media coverage that occurred during my visit helps to inspire and reach many more in South Korea and all over the world.

After the lecture series we were given the chance to experience Korean traditional culture. We went to the cultural center and had a traditional meal. We also had a chance to learn about a traditional wedding and Korean drums. We also had a chance to visit a traditional village called Jeonju Hanok. I really enjoyed seeing this cultural side of South Korea. As we were leaving the village there was a presentation of the lion mask dance. This was great to watch as it included the drumming we were shown at the cultural center. 

The following day we returned to our training. In the morning there was Kyorugi training again and I took this time rest as we have had a busy schedule. In the afternoon we had Poomsae (Forms) training during this time I did a demonstration of a Poomsae to the group and joined the instruction. I really enjoyed the Poomsae part of the training. Unfortunately,  at the end of the Poomsae my knee gave out on me. This stopped me from being involved with the Kyukpa (breaking). We also took a trip to the construction site of Taekwondowon and it was amazing to the models and picture come alive.

In the evening our day of culture continued as we had a K-POP dance performance. Then the youth presented folk costumes and had a talent show from their native country. At the end we the demonstration of the flying pungdeung where we wrote our hopes and dreams and let them fly in the sky.

On our last full day we packed everything up and moved ourselves to Seoul. We were on our way to do a Poomsae and Kyukpa demonstration at the Olympic Park. When we arrived they gave me a new dobok with the sleeves removed. We did a short practice and then were given a break. Things were going well and then my knee gave out and I had lots of pain. It was so bad that I couldn’t bend my knee and barely walk. My friend Danielle was there for me and helped advocate for me. I had managed to do everything else was doing without problem but my body had hit its limit. However, within a few minutes a Mater from Spain was by my side and was massaging and using pressure to help my knee. I was given ice and told to sit. Within five minutes I was standing without pain and was able to join the demonstration of the Poomse.I was glad to be about to join the demonstration. However the knee pain did return and I had to rest at the hotel for the rest of the afternoon. It was not a decision that I like , but it was a needed and responsible one. Growing up with a disability I have learned the importance of having support and knowing when to stop. On this trip I had different support people but one stand out my friend Danielle. Danielle was there as a companion and gave so much support without question. She carry things for me so I would last longer and helped me with the smaller things that happen throughout the trip. It was her support that made a difference to me.

We ended the week with a final dinner. During this time I had the chance to talk with the youth from all the different countries. I found out that my story has been published in a magazine called I Love Taekwondo Global Magazine. I had an amazing time on my second trip to South Korea and I look forward to a chance to return again.

Adaptive Sports

For a number of years I have thought about getting a bike again. As a child I had a big wheel and loved it.  I rode it so much it literally fell apart one day. Since then I have not had a bike and have often wanted one. Over the years I looked into it and found it to be expensive and complicated which often lead me to find something else to do with my time. Well about two weeks ago I started looking into bikes again and came across new information and possibilities. On Friday I went to NH to a program called Northeast Passage to have a bike demo. I was going to be able to try various bikes and see which would really work for me. Very exciting.

I received more out of the appointment then I had imagined. When I first arrived I was brought into a huge room of bikes. I got to look through them and see what would work we settled on two possibilities. A trike bike and the banana peel bike. The trike bike we had to play with for a while to get things set at the right measurements. This had hand brakes and the steering were with my hands which I found to be difficult once they had me riding it.

Then we switched to the banana peel bike. This bike was amazing it was so easy to use the steering and peddling were controlled by the hips and legs. It felt so natural. I rode around the parking for a while and found that I was getting good at it pretty quick. The main drawback to this bike is that it is only a one speed. So if I really got into riding I may need something with more speed.

I had a lot of fun and got amazing information. I found that I could sign up with Spaulding Hospital to be involved with their adaptive cycling program and use the same banana peel bike. This would give be a chance to really try this bike out before buying it. Then I learned about other adaptive sports that Northeast Passage was involved with water-skiing, kayaking, golf, and shooting. I’m very exciting about all these possibilities for this summer. I am already signed up for cycling and water-skiing. I’m looking into kayaking and shooting. I love to try new thing!

Easter Seals-Ready, Set, Go!

Easter Seals Team Hoyt Rising Star Award is given to a person who shows determination to break down barriers facing people with disabilities. This year I had the honor to be presented with this award at the Ready, Set, Go event. The evening was wonderful. Barry Nolan was the Emcee. He had great remarks about Dick and Rick Hoyt. I only recently have learned about the Hoyt Team and was even more inspired by their story after hearing Barry. Then there was the unveiling of the Team Hoyt Portrait which was amazing. Later I was presented with the Rising Star Award. Kirk Joslin, Easter Seals, presented me with the award along with a few friends of mine. I have been a friend and mentor to the Perrino family as their son also has TARs. I was blown away by his remarks regarding my life. I have to say I was a bit teary eyed as I was given the award.

I was honored to receive this award. As I said that night I have spent my life just being me and never imagined that my life would inspire so many people. I spoke to the Ready, Set, Go audience the only way I could and that was from my heart. I told them how amazing my family and friends have always been to me and how they made difference in my life. I also told them about some of the amazing experiences that I have had working with Massachusetts Easter Seals.

My friend Remon Jourdan then read an original poem called “An Honorable Equation” which was an opening for the next award. EMC Corporation received the Team Hoyt Award because they have determination to break down barriers facing people with disabilities. As a corporation they are ensuring that people disabilities have equal opportunities to work.

The whole evening was awesome and I’m honored to have been a part of the Ready, Set, Go evening.