As we all know, children are not born with instruction manuals and you have to figure it out as you go along. This is especially true when you encounter major challenges with your children.
When Caleb was first diagnosed with SMA, I had no idea how much of my life would be spent in doctors' offices, therapy appointments and hospitals - both for inpatient and outpatient treatments. Or how deep and profound the grief was when Dave and I had to process that our dreams for Caleb and our family had to change so completely from what we had imagined.
After the shock wore off, and we chose to climb this huge mountain in front of us rather than wallow in the valley of self-pity and bitterness, we had to readjust our thinking and our parenting. Spoiler alert - there is no book on how to raise a special needs child to be a thriving successful and happy adult! I know because I have looked. Yes there are books and resources but it was an “eat-the-fish-and-spit-out-the-bones” approach.
So, in true parenting fashion, we flew by the seat of pants, prayed, and did what we thought was best.
Our first goal was to encourage Caleb that he could do amazing things and achieve his dreams. To this end, I started buying children’s biographies on differently-abled individuals like FDR, Helen Keller and Louis Braille, along with other biographies to start planting the seeds that he could do great things.
Secondly, I sought out parents I could look to as role models. I began observing other families affected by special needs - especially at Cure SMA conferences. In our journey with this disease, I have learned a huge distinction - we are NOT a SMA family, but rather a family affected by SMA. By this I mean that SMA does not define Caleb, our family or me as a mom. Is it a huge aspect of our daily life? ABSOLUTELY! But does it dominate our life, our thoughts, and most importantly our attitude? ABSOLUTELY NOT!
What I discovered was that disabled adults who were positive and thriving were the ones that did not let SMA define them, but acted as if their disease was an obstacle to overcome. Their conversation was about their interests, their jobs, their passions, etc. and not about SMA. While being willing to answer questions about their obstacles and help others navigate them, these individuals focused more on what they could do.
After identifying these amazing individuals, I watched, talked and listened to the parents who raised them. The ones I gravitated towards were the ones that would put their arm around me, empathize with the challenges and grief. They would agree that yes, SMA is crappy, but then immediately look at the positives: their child(ren) had amazing perseverance, their other children grew up to be empathetic and caring individuals, the challenges they faced as a family made them appreciate the little things that others may take for granted, and finally, they looked towards the future at the limitless possibilities of what our children could do. I wanted to be this type of parent.
What I steered clear of were the parents who only wanted to talk about the disease. These people seemed to only see the limitations and the grief of the initial diagnosis and were not willing to move past that. They used it as an excuse to be bitter and discontent. They lived in fear of the future and bemoaned the limited options their child would have.
One important point I want to make is that even the most positive parents of disabled children go through a grief period. It is hard to acknowledge you will be taking your child to therapy and doctor appointments while others get to go to dance class and sports. It is also difficult to strike a balance between “typical” siblings and a differently-abled child, feeling like you are providing enough attention to each child. But the reality is - you just do it. You push on and preserve for your child and then one day watch as they begin to persevere on their own.
I am extremely proud of Caleb. He has had his hard days where he would cry and be frustrated. My heart would break when as a young child he would voice his wish that he could walk, and sometimes cry. He has come to the point in his life where he has accepted that while SMA affects him, it will not define him. So, I happily take pictures at doctor's appointments, because a great deal of his young life has been spent in doctor offices and hospitals - and he is stronger because of it, and that definitely deserves its own layout in the family albums!
Scrapbooking Tips
I often have to get pretty creative with layouts that focus on medical/hospital themes. There are limited papers and embellishments available. When I find supplies with a medical theme, I usually stock up on the papers and stickers. After COVID, Echo Park came out with a first responders paper collection. I ordered at least two of everything they offered!
One thing I loved was a 6x4 card that said, “You Are Amazing.” I carefully fussy cut out each individual letter, leaving just a minimal white border. Using foam adhesive, I centered the word "AMAZING" centered across the bottom border. This meant I had to adhere the first part of the title on top of my photos. I chose to do this so I would have a common margin of the colored papered strips on the top and bottom of the layout. It looked more pleasing to the eye.
One thing I did when adding my embellishments, is I placed the shot sticker in a way that pointed the viewer's eye to the IV in Caleb's hand. As I was arranging my embellishments in a visual triangle I originally had the shot on the other side of the page. But I found the little needle was directing the eye off of the layout. That's when I got the idea to move it to the right side and position it in a way that drew my attention to Caleb's hand. The more I scrapbook the more I realize that attention to little details like this make a big impact on the overall appearance of the layout.
In the beginning of our special needs journey, I would have never imagined that I would ever be in a place where I would be able to scrapbook photos of Caleb getting treatments, but I find it therapeutic and a way to celebrate Caleb, what he goes though, and just how amazing a kid he is for living life to the fullest despite his challenges.
Supplies Used:
Cardstock - Bazzill
Pattern paper, stickers, enamel stars - Echo Park
Embroidery Floss - DMC
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