Hi Everyone! My name is Amanda. I’m a happily married mother of three beautiful children. I work and attend school full time and my husband is a stay at home dad and about to start school as well. Like most other large families, our house is usually humming with barely controlled chaos. Our youngest daughter, Malina, was born with a rare chromosomal deletion. Basically, she is missing the bottom part of her 13th chromosome and attached to that is an extra copy of her X chromosome. She just turned two this past February and is so darned cute you can’t help but smile when you see her (I’m not biased am I?) Ok… let’s get started.
Miggy: Amanda, you said that Malina was diagnosed a couple weeks after she was born, can you take me back to that day? Did you know or suspect anything was wrong before that day? Can you compare those first thoughts and feelings with how you feel now?
Amanda: The day we found out about her deletion was actually not as eventful as you would think. I was still grappling with all the information that was being thrown at me that I didn’t have a lot of time to sit and ponder what it all meant (I think it was blessing in some ways). Malina was admitted into NICU on her second day of life and stayed there for eight weeks. I can’t even tell you all of the tests they ran on her trying to figure out what was going on. They finally were able to pinpoint the deletion with a test called micro-array. The geneticist sat us down and explained her chromosomes to us, pictures and all. He then told us that because her deletion was so rare, he would learn more from us than we would ever learn from him. That shocked me. You mean every question I had poised on the tip of my tongue would be met with an “I don’t know?” Yep. That’s exactly what it meant.
I didn’t suspect anything during my pregnancy with Malina. My last two were easy labors giving birth to healthy babies. I expected nothing less from this one. How wrong we were and didn’t even know it! After ten hours and two epidurals, Malina Anne finally arrived! I knew something wasn’t quite right the moment she was born. My husband videoed her birth and amidst all the noise you can hear me asking the doctors and nurses what was wrong. To this day I can’t really put my finger on how I knew. It was just a feeling I had, almost instinctual, that something was wrong.
When I compare my thoughts then to now, the biggest difference is peace and acceptance. I’ve made peace with the fact that I don’t know what Malina’s future holds. I don’t need all the answers right now; we handle questions and issues as they come up. I accept that Malina may never walk or tell me she loves me. She may never play sports or take gymnastics. And you know what? That’s ok. If one day she walks and talks that would be fantastic. If not, that’s ok too. Malina is special because she is MY daughter, not because of what she can accomplish.
Miggy: Explain how Malina’s specific special needs affect your day-to-day life?
Amanda: Last April, due to respiratory issues and the beginnings of congestive heart failure, she had tracheotomy surgery. She requires ventilator and oxygen support around the clock. She has several medicines that must be given at specific times of day, chest PT and inhalers to keep her lungs clear, and she does daily speech, occupational and physical therapy to learn how to hold up her head, sit up, etc. Her schedule is full and our family has adjusted. We don’t go out a lot as a family because it takes so long to load all of her equipment. We also try to limit her exposure to the outside because she is very sensitive to other environments and tires easily. A 45-minute car ride can take her all of the next day to recover from. I miss not going out as a family. I would love to take trips to the zoo, a weekend at the beach, etc. but I worry that it would be too much for her.
Miggy: What are the biggest worries you face for Malina?
Amanda: I worry about who will provide long-term care for her in the event that we can’t. No one else in our family is trained to care for her like we do. We have nurses that come during the week to assist with the bulk of her medical needs, but even that may not be permanent.
I also worry that I’m not doing enough for her. Am I asking the doctor’s the right questions? Did I tell them all of her symptoms? What if I missed an important one? It’s so easy to get lost in the details and medical symptoms that you forget she is just a baby and that babies get sick. I feel like I need to watch her 24/7 for some small sign that she is getting sick, or having trouble breathing. We have numerous machines that would alert us in the event of an emergency, but sometimes I still can’t relax.
Miggy: How can people best approach or respond to Malina? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Amanda: I understand that it’s hard not to stare when you see this huge double stroller filled to capacity with all kinds of medical equipment and this little baby in the middle of it all with tubes and wires surrounding her. While I understand people’s curiosity, I wish they would take that extra step to come over and say hello. Comment on her pig tails, tell me how cute she is. Something! Even a smile would be welcome. I don’t think that people realize how hurtful it can be to stand and stare at us while we suction her or we’re dealing with her vent alarm going off. If you’re curious, please come up and ask questions. I enjoy showing off all of the medical jargon I’ve learned over the past two years. Like other parents, I enjoy bragging about what a sweet little girl she is.
Miggy: Tell us something you love about Malina. A special story, a personality trait or just something others might not know.
Amanda: I don’t know where to start; I love everything about her! Watching her bloom since the trach surgery has been a huge blessing. We didn’t realize before how much energy she put towards breathing. Now that she doesn’t have to, she has time for other things. She LOVES chewing on her toes! A lot of times you see her she’s either talking to her hand, her favorite monkey or imitating some cheerleader move that will enable her toes to reach her mouth.
She’s started communicating in her own way. Her nurses have learned what she’s thinking by a look, movement or cry that she’ll give. She’s quick to let you know when she’s done with her therapy! She can be stubborn when she wants to be and she’s got a little temper on her that cracks me up whenever I see it.
Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?
Amanda: What’s the biggest lesson? Wow…that’s a tough one. It’s not one big lesson so much as a bunch of smaller lessons that came together and changed the person I was before she was born. I’m not the same person I was two years ago. I’ve learned how to be a patient advocate and speak my mind about what I think is best for her. I’ve learned not to take the small moments for granted. I’ve learned what a wonderful father my husband is. Malina has changed me in more ways than I ever could have done by myself. I believe she has made me a better person, certainly a better mother. This isn’t a situation I would have pictured for our family, but I think we’re doing a pretty good job. I’m thankful for each day we have together.
Amanda thank you for your wonderful spotlight and for sharing your beautiful Malina with us. I love what you said about the biggest difference between when you first found out about Malina and now is "peace and acceptance"... yeah, I get that. And once again I love that you talked about how you just knew... those motherly instincts are no joke. Thanks again!
As always, if you or anyone you know would be interested in being spotlighted please email me at thislittlemiggy at gmail dot com.
Have a great weekend!