Special Needs Spotlight: Raisa

***************

Miggy:  Stasia thank you thank so much for being here today and sharing your story and wonderful Raisa with us today. So let’s start at the beginning, can you take us back to the day you knew Raisa had special needs?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Stasia: Oh yea, I remember.  We learned early on in my pregnancy that Raisa had multiple physical “anomalies” and were given a choice as to whether or not we wanted to continue the pregnancy. The decision was easy, though we didn’t really know what to expect until she was born. My pregnancy was filled with anxiety and fear, though I did have some beautiful moments of pure pregnancy bliss. And then quite unexpectedly, my water broke 5 weeks early, and I was taken by ambulance to a larger hospital about 1.5 hours from my home.  Surprisingly, I was somehow able to let go of months of anxiety and fear and be fully present for the miracle of child birth. I was fortunate to have a lovely and nurturing natural childbirth with very little intervention, despite the labor and delivery room being filled with specialists, ready to resuscitate and respond if necessary.  The very moment Raisa was born, the neonatolgist whisked her away to do a full examination, even though she passed her APGAR test with flying colors. I didn’t see her for almost 30 minutes.  When the doc finally brought her to me, swaddled tightly in her baby blanket, he hovered above me and very matter of factly presented me with my baby, and a laundry list of everything that was physically wrong with my daughter. I hadn’t seen her yet, and his description left me absolutely petrified to even look at her.  Until I did, and she was absolutely perfect.  To be honest, when I look back at that moment, I would like to kick that doc in the knees.  Ok… maybe not THAT. But why didn’t he say something like, “You’re daughter is absolutely precious, congratulations.  Why don’t you spend some time getting to know, and in a few minutes, we can talk about some of the things I discovered in my examination.  But right now, the most important thing is for her to be near you, so go on, hold her close to your skin and get to know your precious baby.”  

Raisa’s needs became more and more apparent as the days, months and years passed.  Our days were filled with medical appointments, hospital visits, surgeries, and discovery.  And absolute pure joy and marvel.  Raisa was the sweetest, most lovable, kind hearted, burst of love I’d ever met.  

And today, all that fear and anxiety has melted away. We still have “stuff”. But if I’ve learned anything in the past 8 years, it’s that everything’s gonna be just fine.

Miggy: I know there was period of time where Raisa’s needs were constant, with many, many doctors appointments.  Can you tell us how Raisa’s needs affected your day-to-day life back then and how they affect your day-to-day life know?  

Stasia:  My life was completely devoted to my daughter’s wellness for many many years. I did nothing but care for her. I stretched her tight muscles.  I massaged her camptodactylic fingers for hours every day. I drove her back and forth to Boston multiple times a month to meet with her geneticist, otolaryngologist, audiologist, cardiologist, endocrinologist, pulmonologist, GI doc, sleep disorders doc, neurosurgeon, urologist, cranio-facial doc, and/or hand surgeon, just to name a few.  I restrained her dozens of times for blood draws, swallow studies, nasal rinses, and wound packing.  I even pumped my breasts 6 times a day for 18 months because I was committed to my daughter receiving mother’s gold.  I loved on her, snuggled her and played with her 1000 hours a day.  I gave her absolutely everything I had, until I couldn’t do it anymore.

And that’s been hard on Raisa. As she’s gotten older, her medical need has dropped off dramatically.  And though in my mind I feel as though she doesn’t need me in the same way anymore, she doesn’t agree.  She misses mama’s constant love and undivided attention, and it’s a struggle the two of us are currently navigating together.

Miggy: What are the biggest worries you face for  Raisa?

Stasia: Oh geez. I guess I worry about kids making fun of her for being different. But this is a tricky thing, because I have to be careful not to project my fears onto her. If somebody made fun of her 4 fingered hand, it would crush me, but maybe it won’t crush her. She does, after all, love her four fingered hand more than her five fingered hand because it’s so “unique”. And a few months back, a kid at school said something to her about being glad that HE doesn’t have to wear hearing aids like she did, and do you know what she said… “You’d be glad to have them if you had hearing loss like me.  They’re awesome and let me hear so much better.”  She never took offense. Her feelings weren’t hurt. And the kid did a total about-face. I hope, I hope to the moon and back that she can move through life with this sort of grace and confidence.  But undoubtedly there will be a time when somebody WILL say something mean, and I hope it doesn’t break her.

Miggy: In addition to being a mom you also are a personal stylist and you have a fantastic blog where you write about style.  Your main message is to help people’s outsides match their insides, matching their inner style to how they actually feel on the inside.  You have a particularly poignant story about your ah-ha moment in regards to this philosophy and your daughter Raisa.  Will you share this story with my readers?

Stasia: Since Raisa was a young girl (2 years old) she’s been drawn to boy things. Whenever she went to the babysitters house, who had two boys of her own, Raisa would come home wearing her son’s clothes. I never made much of it, and never considered that this could be a real thing… my daughter preferring boy clothes over girl clothes. The clothing battles REALLY started when she was 4 and 5 years old, because she didn’t want to wear dresses, boot cut jeans or t-shirts with capped sleeves. But, I persisted. Until last December, when she was 6 years old. We were at a thrift store and she wanted me to buy her a shirt and tie. Ugh, I resisted, but when she found one that she LOVED, I went ahead and bought it for her, knowing right well that I would “disappear it” that night when she went to sleep. But when we got home, she immediately put on the shirt and tie, and stood in front of the mirror.  When she first saw her reflection, she became motionless and said to me in a whisper, “Mama, look how handsome I look.”  Then she bolted across the dining room and said, “Mama, Mama, look how fast I can run!” and then she jumped and said, “Mama, look how much higher I can jump when I’m wearing a shirt and tie!”  I just stood there, ashamed, shocked and in disbelief. Here I was, telling my clients to dress their inside to their outside, but I was completely ignoring my daughter’s plea to dress her own authentic inside-out spirit. Now, she wears a shirt and bow tie to school, and she rocks it!

Miggy: I’m familiar with the difficulties in having a child with visible special needs.  How can people best approach or respond to Raisa? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Stasia: Smile at her. Be kind. Be gracious. Ask her how old she is or what her favorite book is. She’s a lovely beautiful child, as all children are. If you have a question, ask. She’d love to tell you the story of how her finger became her thumb, or about the scars on her neck from that big surgery she had when she was a baby, or about how her little brother likes to chase her around the house hitting her with train tracks, or about how she’s really a girl, but likes to dress like a boy.

Miggy: What is the biggest lesson you’ve learned since becoming Raisa’s mom?

Stasia: Hands down, it’s to trust my intuition. When she was a brand new baby, just home from the hospital, every part of my body KNEW that she was struggling during her feeds. I took her to the doctor over and over again, and they just kept sending me home, saying I was being over-reactive and she was fine. I even demanded that my small local hospital admit her for observation.  And though her oxygen levels were dropping during her feeds, they discharged us with nothing more than infant CPR lessons. I was so angry, I could have spit nails. I hopped in the car, and drove her to the ER at Children’s Hospital Boston, where she was immediately admitted to the hospital.  She was aspirating her feeds, and the docs couldn’t believe that she was still alive. I knew something was wrong, even when the fancy, educated, smarter-than-me doctors told me everything was fine. I learned that if I KNOW something, than I KNOW it, no matter who tells me what I know isn’t true.

I never trusted my intuition before, but somehow, it all changed the moment she was born. A few times I faltered, and went back to questioning myself, and each time, I kicked myself in the pants because as it turns out, my intuition was right on.

I know what I know. And I’ve learned to trust that.

***************

Amen and amen. Seriously I can’t not agree with you more about that intuition… when you know, you just KNOW. I don’t even like to call it mother’s intuition, because I think it goes much farther than that. As mothers I think sometimes, often critical times, we are given a gift of knowledge when it comes to our children. And of course I love the story of Raisa wearing the shirt and tie and how she could run faster and jump higher… I think that’s true for all of us when we’re allowed to be who we really are and it’s clear you and Raisa are truly blessed to have each other (and the rest of your family!) Thanks again Stasia for all your wonderful words. One of these days we’re going to have to get our awesome and crazy families together.

Thanks again for reading and supporting the spotlight everyone. Please, please please if you or someone you know would like to participate in the Special Needs Spotlight please email me at thislittlemiggy at gmail dot com.

Have a fantastic weekend!