CMV Spotlight: Alysa and Morgan
I'm so glad to have you! Thank you for sharing your story and helping raise awareness for CMV. Let's get started.
Please introduce yourself and your child to our readers. Tell us a little about your family:
My name is Alysa Grenawalt, my husband and I have two children Hunter who is 5 and Morgan is 20 months old. We live in Wisconsin, where my husband works at a Millwork factory and I have recently became a stay at home mom after trying to juggle my daughters daughters appointments and therapies amongst all of my sons extracurricular activities and school.
Samantha: Before your child’s diagnosis, had you ever heard of CMV, how much did you know?
Alysa: Prior to having CMV mentioned to me at my 20 week anatomy scan I had never heard of CMV before.
Samantha: How did your journey begin? What was going through your mind?
Alysa: After my 20 week anatomy scan I went to a specialist in high risk pregnancies. I was tested for CMV after my daughter had an echogenic bowel. I told that CMV was nothing to worry about after my blood test cane back as a primary infection. The high risk doctor said my daughter would be just fine and I was referred back to my primary doctor who said the same thing, not knowing any different. Due to my health problems during pregnancy, such as blood clots in my lungs and having Ehlers-Danlos Syndrome, along with my daughter failing a non-stress test very early on, I believe around 25 weeks, my doctor referred my care to a different high risk clinic. At that time, I was very worried. After my first appointment they had a emergency NICU care plan set up so the NICU nurses would be in the room when my daughter was born to do assessments and take her to the NICU of needed.| After my doctor had set up the NICU team with me, I had a NICU tour at 30 weeks. The same day I had an appointment with a team of doctors to explain what to expect for my daughter- they didn’t give a very positive outcome. I had appointments with my doctor, ultrasounds, and multiple non-stress tests weekly from 30-39 weeks and I was worried every time I went in that there would be something wrong and I would be having her that day. I, was told due to her echogenic bowel, my blood clots, and her IUGR., that it would be possible Thankfully I was able to deliver her full term at 39 weeks. As soon as she was born she had lab draws, urine samples, an ultrasound of her head to check for CMV damage, and an ultrasound of her spine since she had a birthmark that is common for spinal cord abnormalities.
The ultrasound of her brain came back with cysts, calcification, missing white matter, and a hemorrhage. The spinal ultrasound came back clear. They later confirmed the ultrasound findings of her brain with an MRI. The next day she had her newborn hearing tests and failed it after they did it 3 times before she was discharged at 3 days old. She had to start seeing specialists out-patient right after she was discharged from the hosptial to be able to keep her out of the NICU and come home with me. From the time she was born she has seen many specialists, Morgan has been in and out of the hospital often, and has progressively had more diagnosis added. It can be very stressful at times. I wouldn’t say it has gotten easier, it has just become our new normal in life. It isn’t a shock every-time she has a new diagnosis, gets sick, or her care team adds a new specialist.
Samantha: What secondary conditions does Morgan have? What does a typical day in her life look like?
Morgan has Congenital CMV, Nocturnal Hypoxemia- uses oxygen, mild Cerebral Palsy, Dysphagia- needs nectar/ honey thick liquids, hyper-mobile, G-tube fed, Sensory Processing Disorder, bilateral hearing loss, global delay but continues to progress in her development, and severe oral aversion. Morgan has therapy 4-5 times a week, doctors appointments on average once a week, and sees 11 specialists at American Family Children’s Hospital in Madison, WI. Everyday at home we work on her trying to eat, reading books, walking around trying to get her to be able to have more stamina during the day before getting fatigued, and playing with toys all day. With Morgan’s challenges we adapt things to help make her like as typical as we could giving her experiences like any other child would! Things may be hard for her but she constantly has a smile on her face. I will never forget the time they Morgan had just had a spinal tap at a couple months old, a CT scan, and blood draws done. Less than 5 minutes later she was being loaded in an ambulance being transferred to another hospital and she had the biggest smile on her face. I knew she was strong but at that moment it showed me just how strong my little girl was.
Samantha: What is your biggest fear for Morgan?
My biggest fear for my daughter is wondering how she will do in school, as she’s getting older and wondering if she will get the care she needs at school. Along with when it comes to her not being able to hear well enough in case of an emergency, will someone be there to help her, or if she is going to be treated any different than peers due to her health problems.
Samantha: What is your greatest hope for her?
I hope that Morgan will be able to advocate for herself and stand up for herself no matter what challenges may come in the way.
Samantha: How do you take care of yourself? This journey can feel solitary, like you are in it alone even though you know there are many more out there fighting the same fight. Where do you turn to fill your cup?
There are lots of days that I feel completely alone, my friends don’t understand what my family is going through and nobody does unless they are in the same situation. I have turned to many of my friends with children similar to Morgan, and even if it’s been a hard time I can turn to them and talk, knowing they have gone through the same thing before. I have distanced myself from certain people due to negativity or due to pure ignorance being around a child/ family with special needs. I couldn’t be more relieved after having done that. One of the best things I could have done for myself for my own self care is deciding to be a stay at home mom to my children so I didn’t have to juggle a very stressful job and all my children’s needs. Since I have stopped working I have made time as a family to go over to friends houses where our kids will play together, going to dinner with my husband while we have a respite care provider watch the kids to have some down time, or little things like running to the grocery store alone to have an hour alone.
Samantha: A life filled with hardness can teach us some amazing lessons on love, kindness, empathy, and joy. What are some lessons that you have learned through your journey that might be helpful to a mother who has just begun?
I have learned so much from my daughters journey. I have learned to never take anything for granted. Things as little as being able to hear a bird chirping outside is something my daughter will never be able to hear. I took for granted all the times Hunter and I could just up and leave for the day and not having a worry in the world. With Morgan, we have to have tons of equipment with us, make sure we are close to a hospital as she gets sick so often. I have become very knowledgeable for my daughter's needs and share my knowledge with others to be able to help their child. Having a child with special needs doesn’t change a person, it just opens up many more doors that were always right in front of you the whole time. Being a mother to my two amazing and perfect children in my eyes means everything to me, and no matter what challenges come up I will always push to get my children what they need and be their advocate.
Samantha: What is a quote, scripture, prayer, or piece of mediation that you would like to leave us with today?
WELCOME TO HOLLAND by
Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
If you would like to keep up with Alysa and Morgan, follow them here.
If you would like to learn more about CMV or make a donation in honor of Morgan, please visit the National CMV Foundation.
To make a donation to the Foundation in honor of Morgan, please visit here.