#Medical, ADA, Adult, adulthood, Adulting, Advocacy, appointments, Autobiography, Back Pain, BackPain, cardiovascular, Chronic illness, Chronic Pain, Chronicillness, collagen, College, College student with disabilities, College with Disabilities, CollegeStudentwithDisabilities, CollegeWithDisabilities, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, doctor, Doctors, drs, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, future, genes, geneticist, genetics, genetics doctor, genetics dr, Handicap, Handicapped, Handicaps, HealthCare, Heart, heart conditions, heart disorders, heart health, heart issues, heart problems, hospitals, illness, Inspiration, inspirational, Joint Pain, JointPain, Joints, Joints Pain, KyphoScoliosis, Kyphosis, Life, Louisiana, Lungs, marfan Syndrome, MarfanSyndrome, Medicaid, medical, medication, medications, memoir, Motivational, Pain, Pain Doctors, Pain management, pain meds, PainDoctors, PainManagement, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Respiratory, Scoliosis, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spine Pain, SpinePain, Spoonie, Spoonies, students with disabilities, StudentsWithDisabilities, support, Syndromes, Uncategorized, Zebra, Zebras

Genetics update: I DO NOT HAVE EDS; I Have Marfan Syndrome! οΏΌ

Β Talk about turning my world upside down!! LMAO..30 years thinking I had one diagnosis ( Ehlers Danlos syndrome).. Come to find out it’s a different connective tissue disorder, Marfan syndrome. LMAO 🀣🀣

My life is never dull.. it’s a roller coaster.. another loop de loop, turn in my life lol πŸ˜†
I just got the diagnosis from the genetic testing, today!!! I am still in shock..30 years of lies! LMAO.

https://drive.google.com/file/d/1QC4vfqgw-UddjMb-HZU29fi16j9oWARK/view

#Medical, ADA, Adult, adulthood, Adulting, Advocacy, Autobiography, Back Pain, BackPain, Chronic illness, Chronic Pain, Chronicillness, College, College student with disabilities, College with Disabilities, CollegeStudentwithDisabilities, CollegeWithDisabilities, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, doctor, Doctors, drs, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Fall, Fall Semester, Fun, future, genes, geneticist, genetics, genetics doctor, genetics dr, Handicap, Handicapped, Handicaps, Happiness, Health, HealthCare, Humanity, Humans, Humor, illness, Inspiration, inspirational, Joint Pain, JointPain, Joints, Joints Pain, KyphoScoliosis, Kyphosis, Life, Louisiana, medical, medication, medications, memoir, Motivational, Pain, Pain Doctors, Pain management, pain meds, PainDoctors, PainManagement, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scoliosis, sickness, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spine Pain, SpinePain, Spoonie, Spoonies, Stamina, students with disabilities, StudentsWithDisabilities, Syndromes, UnBreakable, Uncategorized, writing, Zebra, Zebras

Life Update: Resuming College, Registering Fall 2021 classes

Based on my current stamina level, I decided to only resume college part-time: 9 credit hours-3 classes scheduled: I will be taking Eng359:Advanced English writing for social sciences class (Monday and Wed. 1-2:15 p.m.), Socio364: Juvenile Delinquency (Because I feel like that would be interesting- on Mon, Wed., and Friday 10 a.m.-10:50 a.m.), and CMCN307: Communication in leadership class (online). I still have many many many choices in classes I want to eventually take but they were either full or not available this semester. I am just so eager to start back in the fall and I hope I don’t get burnt out, able to keep up and try my best and get something out of these classes πŸ™‚ I’m very optimistic and I think I chose some pretty good classes. Let’s see how long that optimism stays. πŸ˜› haha.

#Medical, ADA, Adult, adulthood, Adulting, Advocacy, Autobiography, Autumn, Back Pain, BackPain, Chronic illness, Chronic Pain, Chronicillness, collagen, College, College student with disabilities, College with Disabilities, CollegeStudentwithDisabilities, CollegeWithDisabilities, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, doctor, Doctors, dreams, drs, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, ENergy, Facing Fears, Fall, Fall Semester, Family, Friends, Fun, future, genes, genetics, Handicap, Handicapped, Handicaps, Happiness, Health, HealthCare, heroes, Humanity, Humans, illness, Inspiration, inspirational, Joint Pain, JointPain, Joints, Joints Pain, Joy, KyphoScoliosis, Kyphosis, Life, Louisiana, medical, medication, medications, memoir, Motivational, Originality, Pain, Pain Doctors, Pain management, pain meds, PainDoctors, PainManagement, Parents of Disabilities, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scary, School, Scoliosis, sick, sickness, society, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spine Pain, SpinePain, Spoonie, Spoonies, Stamina, story, students with disabilities, StudentsWithDisabilities, superheros, support, Syndromes, UnBreakable, Uncategorized, Zebra, Zebras

Life Update: Fall 2021 Resuming College, Close to Bachelors Degree!!!!

What girl is resuming college in the fall semester and only 28 credits from bachelor’s degree in general studies with a concentration in behavioral studies…? πŸ™‹β€β™€οΈπŸ™‹β€β™€οΈπŸ™‹β€β™€οΈ this girl, right here! Woot woot.

However, being I have 28 hours left: All I have left is an Advanced English writing class, some general electives, and enrichment (concentration) classes. While I think if I do 2 semesters of full time-each one will be about 15 credit hours, (which is about 5 classes if its a 3-day class)- more if its a 2-day class.) that will be 2 extra credit hours in the end run, but then I will be done by end of next spring if I am able to keep my grades up.

However, I been out for a while and I get stressed and overwhelmed easily, so maybe Instead of setting myself up to fail and burned out, I only do a few part-time, even though I am thinking these will be “Easy” classes.

I don’t know what the workloads entail for these classes. Plus my stamina isn’t great right now. So looking at my energy level now, it’d probably be safest to do part-time in the fall, and then in spring, I can work my way up to more credit hours. (although maybe not, since spring starts in January and that’s still cold…unless it’s mostly online during that time. I don’t know. Time will tell.) Any advice is greatly appreciated. πŸ™‚

Many people on my Facebook suggested only taking 1-2 other classes besides the advanced writing class because for most people, advanced writing classes take up a lot of time.

The next biggest issues while registering for classes:

1.) When going to the course description, some descriptions only say “will have an additional cost,” It doesn’t say anything about what the course is about or the workload expectancy: Like how is a student supposed to figure out if that class is a good fit with another class they are taking? UGH!

2.) Most of the classes I am looking at either is full to capacity, not a good fit with the advanced writing class, and some just aren’t available/an option for this semester.

So right now, the only class I can schedule is advanced writing: Could that be a sign from God? Like “Hello, all you need to take is this one class for right now.” Only time will tell.

#Medical, ADA, Adult, adulthood, Adulting, Back Pain, BackPain, Broken Rods, BrokenRods, Chronic illness, Chronic Pain, Chronicillness, collagen, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, doctor, Doctors, drs, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, genes, geneticist, genetics, genetics doctor, genetics dr, Handicap, Handicapped, Handicaps, Health, HealthCare, hospitals, illness, Joint Pain, JointPain, Joints, Joints Pain, KyphoScoliosis, Kyphosis, Life, Louisiana, Medicaid, medical, medication, medications, memoir, mood swings, Pain, Pain Doctors, Pain management, pain meds, PainDoctors, PainManagement, Parents of Disabilities, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scoliosis, sick, sickness, Side effects, Special Needs, Spinal Deformity, Spinal Fusions, spinal infections, SpinalDeformity, SpinalFusions, Spine, Spine infections, Spine Pain, SpinePain, Spoonie, Spoonies, support, Syndromes, UnBreakable, Uncategorized, wellness, Zebra, Zebras

Disability update: Genetics appointment, pain management, pain, oh my!

In High School, I learned that for me to get stuff accomplished, I Need To Do Lists, color-coded or numbered by priority: Otherwise everything is absolute chaos. Yesterday I made a to-do list and got most of it completed: 
I called the genetics doctor to do the genetics testing and find out more about my Ehlers Danlos Syndrome: what type I have, what symptoms of that type, etc.
 I had been waiting to hear back from them. I went to my GP (general physician) in August 2020 to get a referral, they finally sent the referral in Oct or November, and I had still not heard back from the genetics dr office to get an appointment set up. I called and the referral was never uploaded into the computer so I had to call my GP to ask them to refax the referral, but instead of having to wait for that, they went ahead and got all my file info and set an appointment to get me in the books; won’t be until August (unless someone cancels or reschedules, I am on a waitlist.) 
In other news, I am down to 3 pain pills left and my pain management doctor appointment isn’t until the 29th of this month! I called to find out if there was any possible way to either give me another half refill to tide me over until the appointment or to move my appointment up: I was shot down for both! I have 60 ct of tramadol per script- however, since I was completely out of my 60 at my last appointment- they had mentioned that they were going to up my count to 120 pills per bottle-but forgot to do that, I see the doctor every 2 months, and my dosage on my bottle says “take 1-2 every 4-6 hours as needed. Max dosage 8 daily;” On a BAD pain day, I take 6; On a good day, I only take 1. On a great (Miraculous rare day) I take 0. I was completely out on my last appointment on 1/28 (so they were filled that afternoon,) that 60 pills lasted me 20 days till 2/17. 2/17 lasted me until 3/11 with 3 left that I will now have to hide in a spot for absolute emergencies until my appointment on 3/29. The next 17 days will be a test of patience, nerves, and will power, I will have to hope and pray that Tylenol and my spasm medications (Baclofen) and (Gabapentin) will be enough, However: If I lose patience and become “Short with anyone,” I am apologizing now ahead of time. Please bear with me and realize I do not mean it, I am in pain and therefore my nerves are already on edge. 
prayers appreciated. 

#Medical, ADA, Adult, adulthood, Adulting, At home, Athome, Autobiography, Brain Fog, BrainFog, Broken Rods, BrokenRods, Chronic illness, Chronic Pain, Chronicillness, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, doctor, Doctors, drs, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, genes, geneticist, genetics, genetics doctor, genetics dr, Handicap, Handicapped, Handicaps, Health, HealthCare, hospitals, illness, Joint Pain, JointPain, Joints, Joints Pain, KyphoScoliosis, Kyphosis, Life, Medicaid, medical, medication, medications, memoir, Parents of Disabilities, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scoliosis, sick, sickness, Side effects, Special Needs, Spinal Deformity, Spinal Fusions, spinal infections, SpinalDeformity, SpinalFusions, Spine, Spine infections, Spoonie, Spoonies, Syndromes, UnBreakable, Uncategorized, Weird, wellness, Zebra, Zebras

Disability Update: uh-oh! I fell!

 I do not know what happened today, but early this evening, I fell. I am assuming I tripped over a thing of bottle waters, but I am not exactly sure what happened; it all happened so fast! I know that all day I been feeling pretty tired, weak, dizzy, lightheaded; kind of day-dreamy. Research shows that it could be a Ehlers Danlos thing: POTS or Dissociate, Brain Fog, or dysautonomia, or it could just be the fact its “that time of month.” Who knows, its a mystery.  I am not even sure what way I landed or anything. I think I fell on my side, but I cant remember for sure. 

I do not hurt right now, but I will probably feel it tomorrow. I just hope I haven’t done anymore damage to my rods than they already are. If the pain shows up and lasts, I will do x-rays and send them off to Dr. Kelly in St Louis. 

For now, I just got a lecture from Mom about being more careful and to “use my walker,” and “let go of my pride,” blah blah blah. It isn’t a pride thing Mom. it’s just hard to remember to use that thing when most of the time I do not need to use it. I do not mind my cane, walker, or wheelchair, but most of the time I am fine, so I do not think to use them when I feel weak. I will have to figure out a way to remind myself I guess. I just wish I knew why I was having these falling spells?? This is my second one, first one was back in August. Is it because of “that time of month,” or something more serious? Is it because I am not being cautious enough? Its a mystery..One I will have to figure out before I end up living in a plastic bubble because I am such a klutz. Ugh! 

#Medical, ADA, adulthood, Adulting, appointments, At home, Athome, Autobiography, Broken Rods, BrokenRods, Chronic illness, Chronic Pain, Chronicillness, collagen, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, doctor, Doctors, drs, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, genes, geneticist, genetics, genetics doctor, genetics dr, Handicap, Handicapped, Handicaps, Health, HealthCare, hospitals, illness, Infection, infection drs, Infections, Joint Pain, JointPain, Joints, Joints Pain, KyphoScoliosis, Kyphosis, Life, Louisiana, Medicaid, medical, medication, medications, memoir, Pain, pain meds, Parents of Disabilities, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scoliosis, Shriners Hospitals, Shriners Hospitals for Children, sick, sickness, Side effects, Special Needs, Spinal Deformity, Spinal Fusions, spinal infections, SpinalDeformity, SpinalFusions, Spine, Spine infections, Spoonie, Spoonies, UnBreakable, Uncategorized, Weird, wellness, Zebra, Zebras

Disability Update: Good News/Bad news, Infection Update

 I got a email from the Mychart app from my Infections dr; Dr. Mejia. He got my bloodwork results in from Quest diagnostics in Lafayette, LA. Good news, I am negative for infection (meaning, no more infection in my body) according to the bloodwork. 

Bad news, he still insists on the plan of antibiotics being a life-long thing; due to the “complexity of the infection,” whatever the heck that means. 

To say, I am disappointed and upset is an understatement. This makes 2 years that my labs show I am infection free. I had hopes that I could eventually get off the antibiotics. I am not even 30 years old yet, and the idea of life-long antibiotics; God willing I live to a ripe old age, that would be 60+ years of antibiotics! 

yes, it times like these it is hard to see the light and positivity of my life, but I cannot loose my faith and Hope in God my lord and savior. He is good and all powerful, he is all knowing and can perform wonderous miracles. He is the only one who knows how my story will go. Be gone, Satan, quit tormenting me with emotional meltdowns and sorrow. I will try to look to God and find peace in his love and warm embrace. 

#Medical, ADA, Adult, adulthood, Adulting, Athome, Autobiography, Child, Childhood, Children, Chronic illness, Chronicillness, collagen, College, Connective Tissue, ConnectiveTissue, Decent Humans, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Family, Friends, Friendships, future, genes, genetics, Handicaps, Health, HealthCare, Humanity, Humans, illness, Joint Pain, JointPain, Joints, Joints Pain, Kids, KyphoScoliosis, Kyphosis, Life, Louisiana, Love, medical, memoir, Mom, Momma, Mommy, Mother, parent, parenting, parents, Parents of Disabilities, Physical Disabilities, Q and A, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Relationship, Scoliosis, Social Media, social networks, society, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spoonie, Spoonies, story, story time, storytime, support, Syndromes, UnBreakable, Uncategorized, wellness, Youtube, youtube content, youtube infleuncers, youtube tag, youtube videos, youtubers, Zebra, Zebras

Planning a Q and A video…with mom….Need questions!

I am planning on doing a Q and A type video with mom for my youtube channel sometime this week. Is there anything yall would like to know?

Any questions about raising a child with disabilities?

Any questions about what I was like as a child?

Any questions about me in general?

Her thoughts/ feelings/opinions about raising a child with disabilities?

Her thoughts/feelings/opinions about society now a days? 

Anything…There are no Dumb questions.

#Medical, ADA, Adult, adulthood, Adulting, Autobiography, Child, Childhood, Childrens Hospitals, Chronic illness, Chronicillness, College, Confidence, Connective Tissue, ConnectiveTissue, Creativity, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Family, Friends, Friendships, Halo Traction, HaloTraction, Handicaps, Happiness, Health, HealthCare, hospitals, illness, Joint Pain, JointPain, Joints, Joints Pain, Joy, KyphoScoliosis, Kyphosis, Life, Louisiana, Love, memoir, Originality, parenting, parents, Parents of Disabilities, Physical Disabilities, poems, poetry, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Relationship, Scoliosis, Shriners Hospitals, Shriners Hospitals for Children, Social Media, social networks, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spoonie, Spoonies, story, support, Syndromes, Talent, UnBreakable, Uncategorized, Youtube, Zebra, Zebras

Life in Slideshows

I made more slideshows about my life in pictures. I added all my slideshows to a playlist on my youtube. 

Link to playlist:Β My Life Slideshows – YouTube

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Disability Journey: through Mom’s eyes

While I was working on my autobiography about my life (still a work in progress), Mom contributed the following chapter for it; Enjoy. 
” South Louisiana knows how to eat, drink & party.  Life was pretty easy for me growing up. I did my share of partying in my teen years.  Life should be a party, but we’re not always the guest of honor. Sometimes we must take our places in the back of the room. Jamie taught me that life is not fair and we are not perfect. I felt guilty and still do sometimes that my daughter has to suffer so much, to teach me and others about important things in life. 

During Jamie’s 1st year of life, words were spoken to me by a doctor that have haunted me to this day. He told me that he could just look at her and see that she wasn’t normal. I am thankful for these words, though, because they opened my eyes. We have all been created to be different, but we are normal. What we are is what God intended us to be, therefore, it’s our normal.

Jamie has such a strong personality with the ability to win hearts, but unfortunately, trying to fit in has made her heart somewhat hard. I always wanted her to be tough. As a female, I knew she would have to be strong; being female with a disability, she needed to be extremely tough. I never wanted her dependent on anyone. She learned well, she hates to ask for help. She hasn’t learned to balance her strong personality and independence with her ability to teach people as well as she has taught me.

A lady that had a hurt back shared with me what Jamie did for her life. During the time Jamie was in swim therapy, this lady was also receiving therapy, but she was having a tough time adjusting to her injury. She was angry, in pain, and feeling sorry for herself. Then comes Jamie, this little ray of sunshine with a smile that would light up a room. It was because of Jamie’s disability she found the courage to not give up. As the saying goes, “She put on her big girl panties and told herself, if this little girl can have such strength to deal with her pain, shame on me for the self-pity.”

She had such an outgoing personality when she was young. Ronald & I brought Jamie to a wedding for a pool playing friend of his. Ronald knew the bride, groom and a few of other people. I knew the bride & groom. Jamie didn’t know anyone. She worked the room like a politician running for office, going from table to table at the reception. By the time we left, almost everyone in the room knew her name. How does society take you from the point of being a social butterfly to the state of almost wrapping yourself in a cocoon? I hope one day, I can see the self-confidence she once possessed shine through again.

Jamie started preschool at 3 years old. She still often tells her preschool teacher, she would like to go back to that time in her life. She was so happy; rarely did she complain about pain. She was in preschool for 2 years. The coordinator wanted her to stay for another year. Ronald and I decided she needed to be pushed through to kindergarten.

She adjusted well with a fantastic teacher. At the end of the school year, her teacher shared with me, how she was apprehensive to have Jamie in her class. Unsure how Jamie would handle the class setting. With tears in her eyes on that last day, she said, “It had been a tough year, the class had challenged her, but because of Jamie’s smile, she had the ability to not give up. Jamie’s disability helped carry her through the year.”

When Jamie was about 5 years old, we took a trip with my niece and her children to Texas to visit my sister. We stopped for fuel. Jamie was told to stay in the car with the others while I went inside to pay. My niece needed the restroom so she came in and Jamie followed her. Jamie asked for a snack cake, but our plan was to eat when we arrived at my sister’s house. I told her, no, but a little lady looked at me & said, “Let that child have a snack” and she bought it for her. I realized at that time, the world was going to spoil my child.

On separate occasions, years after Jamie went to Jr. High, I met up with former principles of the elementary school. Both shared with me, Jamie would give them a hug, every afternoon before leaving school. Sometimes they may have had an extremely hard day, and her hug would lift their spirit.

In Jr. High, the assistant principal would give her such a hard time. He gave Jamie the name “Jasmine” and that is what he called her every day. She would stomp her feet, saying, “My name is Jamie, not Jasmine.” He would laugh. Getting Jamie frustrated seems to be what most of her friends and family like to do.

Most people go through their entire life not knowing their purpose. Jamie’s smile so often would lift a person’s bad day when she was a child. Being an adult, she finds it a little more difficult to be happy and carefree as she was in childhood. Her pain has gotten worse, therefore, it is more difficult to smile. Sometimes she needs someone to give her that smile and hug her that she so easily gave as a child. The great job we did making her independent also makes it more difficult to ask for help from anyone; even when she needs it!

  Why do we try so hard to fit in? We are all created equal. We have different hopes, dreams, and talents. It is when we try to fit in, we are put into a box. Thinking outside of the box is what makes us truly become what we are meant to be.  Ourselves.

People often tell me what a wonderful job Ronald & I have done raising Jamie. I feel we have been blessed to have shared in her great little life. Her life hasn’t been easy, no life is. Dealing with a disability for a child is more challenging, but the rewards I’ve received, far more outweigh the challenges. Sometimes, I still feel guilty, because the struggles with her disabilities have taught me so much about life. Although I do realize, we didn’t raise her alone.”