Life is Changing

Life is Changing

It’s been quite a while since I have last written an update both regarding my health and also Nasir’s diagnosis of autism. As far as my health goes, I feel I’m in the best place I have been in years. I have occasional setbacks, but over-all I have been feeling very good. I’ve been following up with doctors, continuing my biologic medication, and trying to practice a healthier lifestyle. I have been going to the fitness center several days a week. The gym is two-fold. One, for my physical and mental health, and secondly for Nasir. He is socializing with his peers more and more, and the gym’s childcare services provide an opportunity for him to do just that.

Where we started

Since I last blogged about this, we were in the middle of a whirlwind of overwhelming hits coming at us from every direction. Nas wasn’t meeting his appropriate age mile markers. I was battling my own health issues with my Crohn’s disease and mental health, the most difficult being post-partum depression and anxiety. You can read more here.

Soon after the doctors told us Nasir was on the Autism Spectrum, we were thrust into a new normal of therapies of all kinds. Speech, behavioral, occupational, and more. Nasir was nearly two years old and other than making some babble sounds, he didn’t say actual words, mimic our sounds, answer or respond to his name, he wouldn’t make eye contact often, he played independently from other children (other kids didn’t interest him much), he obsessively watched or paid attention to only certain things like specific TV shows that he watched over and over. We would discount or rationalize them, or chalk it up to other things – “maybe it’s his hearing” or “he was born a little early, he’s just a little delayed.”

What came next

Getting the diagnosis of ASD was bittersweet for our family. It’s one of the most overwhelming things to process, but we also have a solid reason for the why’s we were experiencing. We could finally move forward with all the wonderful resources our community has to offer.

Where we are now

Nasir is in therapy nearly every day. He is now talking non-stop. He has lots to talk about and share. He has big opinions and now that he has discovered his voice, he is eager to discover new words, things and experiences. He loves adventure, to play, and to build. He swims and loves the park. He has friends and learns a lot from parallel play. He recently started dancing and his love of music has always been strong. Magna-tiles have opened up his imagination, and he is a master at building castles. He sings, counts, says the alphabet, and identifies so many objects we see throughout the day. He loves his family. Mama and Daddy are his favorite people followed by his grandparents, all his aunties, uncles, cousins and his amazing therapists. He loves reading books, and presently, The Mickey Mouse Clubhouse is his favorite TV show. (We shout “OH TOODLES” a dozen times a day!)

We have come SO FAR in a just under a year. The therapies have provided Nate and I small windows in our day to have a break. Despite Nasir’s achievements, he is still demonstrating behavior that do not allow us many moments for breaks. He’s still a wild toddler, of course, but he also never sits still, his attention span is very short. We are having less meltdowns, but they still occur daily. My entire life is devoted to this sweet boy and facing all the challenges that come our way.

Moving ahead

When I do get a chance, I’m trying to get back into my crochet. I feel that spark coming back. I feel several sparks returning. I’m beginning to feel more like myself. Therapy has helped – my own therapy. It’s been life-changing. Little by little, I have been able to piece myself back together. I’m stronger than I have been in a long time. I can do hard things, and I’m doing them every day. If Nas is doing hard things, then I need to continue to set an example and do the same. We continue to take baby steps toward doing more crochet projects and hopefully soon, things will be back into full-swing.

I am currently working on one crochet project per month, and I have a goal of doing 3 to 4 projects per month like I used to do. At the time of creating this blog post, I am anticipating planning out our Halloween costumes for the family this year. You know we have to go all out like every year! Can’t wait to share what we have up our sleeve in 2022!

 

Here are some fun pictures we took this summer!

 

 

 

 

Scary and Uncertain Times

Scary and Uncertain Times

Like most of America, and the world, I am staying home as ordered by our state officials. It is such an unusual and unprecedented time and everyday things are changing. Our situation is so fluid meaning what we hear on the news in the morning, can completely change by the evening.  I don’t know about many of you, but this unsettled world has me feeling so anxious and nervous. It also puts me on high alert because, as a person with a severely compromised immune system and a long history of health issues including asthma, I am fearful of everything I am learning about this illness.

Presently, I take immuno-suppressant medications that keeps my chronic disease under control, but severely taxes my system leaving me little to fight off infection or illness. I fall into that segment of society who are at high-risk of danger if I come into contact with anything going around.

Plans Change

I have not left my house for over 3 weeks. I don’t know if you recall through my recent posts and videos, but Nate and I had a trip to Colorado planned for our second anniversary and Nate’s golden birthday. (He turned 30 on March 30th) We were going in early March to Denver. Everything was booked, ski-hill passes were purchased, airfare and lodging reserved and paid for, sightseeing plans and a special anniversary/dinner was in the works. Nasir was going to Grammy and Grampy’s house for the week. We were so excited.

As more and more news broke out, it became apparent that we would have to cancel our vacation. I called my doctors and they advised me NOT to travel. They had insisted that in my condition and with little to no immune system to fight, going into an airport or on a plane was too dangerous at this time. Was I sad and disheartened to cancel all our plans? Absolutely. However, I trust my doctor, and if my doctor issues a grave warning like she did, there is no way I would go against her recommendations. I have been through too much in my life not to heed her warnings.

Everything Is Canceled

So, we, like many of you, decided to retract and cancel all our plans and reservations and stay home. Glued to the TV and internet we watched everything unfold in real-time. Rapidly changing, constantly fluid and more frightening by the moment, we stayed in and were gripped by what was happening in the world and right here at home. I needed to walk away from the screens and try to salvage what I could of our “vacation” by re-inventing a plan to enjoy our anniversary and Nate’s birthday. And we did. We kept Nasir home and the three of us did a “stay-cation” in our living room.  We binged Netflix shows, took a few countryside drives, walked a trail or two in isolated places, we cooked a nice dinner on our two celebrations and WE STAYED INDOORS. My extent of “leaving the house” is going into my backyard.

Our Options

Nate is fortunate to have several weeks of vacation and PTO (Paid time off) that he is using up from his “essential” job. He works in a plant that has numerous employees, and from all indications, we felt that his going to work at this time was not wise because of community spread and he was able to use up his vacation to stay home so far. On the advice of my doctors, they suggest he take time off and stay home indefinitely, as to not bring anything home with him that puts me or Nas at risk.

It has been extremely stressful to work through the decisions of him returning to work versus staying home if he is able. Like many people, this serious crisis is forcing our hand to make hard choices to protect our family and none of the choices are easy. He stays home, we cut off our main income for the indefinite future. If he goes to work, then he risks exposure and bringing “it” home in a household that deals with an individual with little to no immune system to fight off any of this. I can’t tell you how scared or anxious I have been!!! I know I am not alone in saying this. ALL of us are scared.

We will find a way

As we navigate through the uncertainties and worries of this ever changing situation and confide in our doctors and families, we have been able to come up with Plan A, Plan B, and Plan C. Each one comes with its own set of concerns and heartaches. Do we take no pay? Can we survive on just my income? (I have exhausted myself looking into options –FFCRA-the Families First Act or Paycheck Protection-none of which apply to us) Do we send Nate to work? Should Nas and I stay with my parents and be apart from Nate for an indefinite duration?

We, are faced with life-altering decisions while we press ahead into the unknown. At least we have what we need. At least we can manage through each plan despite the difficulties of each choice. At least we have support. I remind myself all the time of the blessings I have before me and focus upon those. Many are not so fortunate, and it hits me over and over to imagine the unimaginable. We will work this out. No matter what sacrifice we make, it is small in comparison to so many others. No matter what, we all have had to work through so many rough spots of this situation and it’s not easy.

Moving forward

As we move forward, sometimes slowly, sometimes at a mad pace, the least I can do to keep myself occupied is what I do best. Crochet. So for the next weeks, months, whatever it takes, I will continue to bring you what I can of my craft. I will show up. Every day. I will bring some new projects, new patterns, light, laughter and a distraction from the craziness that is swirling around us. So, join me as we keep moving forward. Bring your hooks and your yarn, and for a few minutes a day try to focus on other things that distract us from our worries, and relax with our craft. Because in a time when so much is out of control, one thing we can be in control of us the choice to take a few moments to do something we love.

“It is how we embrace the uncertainties in our lives that leads to the great transformation of our souls.”

When we reach the end of this, and we will, I hope we can all move forward with more love, patience, and understanding of one another. The lessons we learn will be immense.

I hope you all stay healthy…

~Nadia

P.S. A huge thank you goes out to everyone in the world who are on the front lines of this insanity. ALL the helpers. ALL the essential workers. ALL the people who risk their lives so we can be home. Our gratitude knows no limit. And for the families this may reach, I hope and pray that all of you are well and safe. I am sending every bit of goodness your way.

I don’t know who needs to hear this as I hope no one is breaking these rules, but if you are one who was told to stay home, please do. Follow the guidelines of what has been mandated so that those who are unable to be home with their families can stay as safe as possible during this time.

Sending you lots of love.

Share with us how you are getting through this difficult time.