Comparing Blessings

Which one is more full? Can you tell by looking?  Nope.

 

One of the things I found myself doing as a new mom when Lily was born was I compared her to everyone elses' babies.  Her cry was distinctive. She could talk very early. She crawled late, walked a little later, she was gorgeous and funny. Potty trained herself at around 13 months old. Was I happy enough? Was she happy enough? Did she make friends easily (I do not)? Was she eating enough, often enough.....she was a clothes size over her age sometimes 2!

Holly came along and was the quiet one, but she crawled early. She then walked late. She refused to talk until she was two. She refused to potty train. Refused. We cloth diapered. We wore her. We gave her watermelon. Constantly measuring her progress against my peers kids and the child development books. Also a HUGE baby and child. (No one panic, she is now 5 and uses the potty.....) I slowly learned that each kid is their own person, their own timelines apply, and I would just need to roll with that.

Then Isaac was born. I knew from Holly's babyhood that sometimes kids just take their time. As it became more and more apparent that Isaac was falling behind in milestones and growth, he stayed in premie clothes and then in newborn, 3-6 month sized at a year old. He was diagnosed with 22q deletion syndrome at age 5 months. As a baby it is easier to pass at the playground. Everyone we don't know just assumes he's actually a newborn. As he got older, even crawling, the playground introduction is always followed by, "How old is he?" and the answer is greeted with politeness, but the shock or realisation on their faces says enough to make my gut drop out and make me want to throw up. At that point I usually blurt out his dx and start making excuses, explaining hypotonia.....but it makes me feel ill. It does. Random strangers don't have a right to his medical information. His life should not be his mother making excuses for him. Eventually, he'll begin to understand what that means and it isn't good.

Still when my friends were posting pictures of their 9 month olds walking, cheering with joy at these first steps, I held back tears and my own fears as Isaac was still just crawling at 28 months. I would sob at night. I would question the decisions I made for his therapies. It would consume me at times and block out all other joy in my life.

I stopped doing that. Isaac started walking and I've been too busy trying to keep up. That day was so full of wonder and happy that I thought I would have a heart attack and my face would fall off from smiling.

It got me thinking about my own internal dialogue though. Stop comparing to other "healthy" kids. That part was easy, all I had to do was embrace and rejoice in how adorable Isaac is and how amazing each and every milestone and every day is full of love and happy. Isaac IS healthy, he is making progress, he is amazing.

What is harder is to stop comparing to other special needs children. This goes two ways actually. I found my heart reeling with fear when another kid, a full year younger, with a more severe diagnosis was walking when Isaac was just still struggling to crawl.

Then we'd meet a non mobile 14 year old on a ventilator and I would feel relieved about our situation. Then I would feel guilty for feeling better about ours by comparing to someone else's struggles. How horrible of a person could I be? Then I would get whirled up into fundraisers and fanpages of kids with Isaac's diagnosis who were actually very sick. I felt out of place. How could I offer our story to the collective support groups when Isaac, while slow on physical and verbal milestones, has never had a single surgery and never been hospitalised with an illness, not even RSV even though he had it last winter (just an ER visit). I'd do my part offering prayers, all the time guilting myself into sleeplessness because my kid is healthy. Compared. Someone would get another diagnosis or hospitalization that would send me into another guilt spiral. Why them and not us? Why do we keep escaping the symptoms of Isaac's diagnosis?

I'd read books about special needs families, hoping that folks that I don't know in real life might offer me a more objective perspective, a 22q adult narrative, a therapy book. I kept coming back to comparing what we do, what options there are, Isaac's current health state. Comparing statistics, comparing politics.

Compare.

That's the snare. I don't want my joy to be stolen by guilt and every time I compare in either direction I am racked with guilt and horrible feelings.  There will always be kids healthier than Isaac and there will always be kids sicker with greater struggles than us. We will slide between, walking the line and stumbling, slipping like it is wet sloppy mud. Just like Holly and Lily fighting over who has the most orange juice in their lunch cup, the fighting stops when I assure them that if they drink all they have, they will get more as they each need. Their needs will be met to the best that I can provide. They can relax and settle into saying what they are thankful for and eat and play. Their jealousies forgotten. I can meet my families needs and prepare so if they get worse we can be ready, hopefully.

Since being in this much better place in my own mind, I have found a depth of relationship I had never known with other families. I have found my voice.

That doesn't mean our struggle isn't real and it doesn't mean our joy isn't also a blessing. I used to think it was this grey area we fall into, this fog of in between, but that's not it at all. The world is not black and white with shades of grey and no one is promised perfect health always. We all have our own stories and our own struggles and we do the best we can to make the best life we can manage. Isaac is not a fog of grey, he is orange monkeys, and sea glass green, and bright neon pink Dora sock puppets, yellow bananas, melting raspberry Popsicles, summer peaches, and bright sparkling silver trumpets, and delicious blue skies thick with fluffy clouds laughing as he swings too high on the tire swing! This is the life!

Through my children I have learned  to stop comparing and be with them in that sparkling moment, their fleeting childhood, that magical place where their mother's love is enough and then some.