I can’t believe my sweet Brandon is turning 2. His condition has kept him so purely innocent making every laugh, every smile, every little bit of progress he makes that much more joyous to see. Sure, his condition is in plain sight a handicap but it has taught us so many priceless life lessons that no money can buy, no textbook or professor can teach. We are better people because him and we want to thank God and Brandon for that. We truly can’t wait to see what this next year has in store for him. Happiest of birthdays my darling!!
(if you’d like to read more detail on his condition and our thoughts on it you can catch it at the bottom of the blog post after the images)
Recap of the last year with Brandon. Video is strictly from cellphone footage.
LACMA Rain Room for Daddy’s birthday.
Photos with his cousins and grandpa.
Visiting with the Easter bunny.
Trying some ice cream at the beach.
Announcement that he’ll be a big brother to a little sister.
Trip to Japan. If he wasn’t in the stroller, he’d be forward facing in the carrier. Rob was a champ carrying him like that because he is not a light kid to be putting that kind of stress on your back but it had to be done.
Visited a cat cafe. We would be out all day so having the tablet with Little Baby Bum videos to entertain him was a lifesaver. Probably the most challenging thing was the food situation (Brandon still only eats pureed foods). We only packed enough baby food for half the trip. There was plenty of luggage allowance to pack for the entire trip but were there enough adult hands to push a stroller and roll an extra suitcase of food around for 2 weeks? NO. So we were constantly in search of Japanese baby food.
At the infamous Fushimi-Inari Shrine in Kyoto. A ton of steps means its not very stroller friendly so we only got to see a small portion of it.
Napping in a beautiful part of Kyoto and at the awesome Osaka Aquarium with the whale shark.
Annual holiday family photo session.
Annual visit to Tanaka Farms Pumpkin Patch. Always a ton of fun!
Wore his brother’s hand-me-down chicken costume from 2 years prior.
Holidays at Disneyland is a must.
Keeping with tradition we visited Santa at the Crystal Court.
Christmas Eve with mommy’s family featured again with grandparents and cousins.
Became a big brother to Harlow.
Valentine’s Day shenanigans.
Turning 2!!! And sitting better on my own.
Shortly after Brandon’s 1st birthday we found out from the neurologist that he has hypotonic cerebral palsy which explains exactly why at a year old he had yet to babble, sit, crawl or walk. Basically, Brandon seems to constantly be in a relaxed state because his cerebellum was damaged before birth. They describe it as a “rag doll” look so you’ll see that he has trouble sitting up straight and lack hand and leg coordination. Cognitively he is also behind and estimated to be at about a 6-7 month old and still eats pureed foods since his tongue and mouth control has yet to develop that far. His eye sight was also affected so at just 14 months old he already started wearing glasses.
For me, the gravity of the effect his condition would have on the rest of our lives did not totally hit until 6 months after his diagnosis. For the first 6 months I just thought he’d always eventually “catch-up” to all the other kids his age, but in reality he will progress at a snail’s pace and one day stop progressing altogether. Where will he stop? We won’t know until we get there because every case is unique, every child different in how this mystery illness affects them. Because his progress is so slow every little bit of progress he makes puts us in awe and has us jumping for joy. Now with a year of physical and occupational therapy gone by he has yet to get himself into a sitting position but when put there, can sit on his own for a few minutes; still doesn’t babble or crawl or walk. The professionals can’t give us an estimated age of when he ever will do these things because again, each case is so different. Brandon’s still light enough for me to carry but there will come a day when he will be too heavy for me so it will be his dad who carries him everywhere–his own personal Hodor if you will (Game of Thrones reference).
I’m not going to lie, every child I see his age (or younger even) I yearn for him to be doing the exact same thing: walk unsteadily up/down the aisles at the store, sit in a shopping cart, sip from a straw, say “mama” a million times to get my attention, crawl around the house getting into mischief, self feed a snack, wave hi/bye, hold his own bottle, sit unassisted on the carousel ride, flip pages of a book, use a spoon, blow out his birthday candle, share bath time with a sibling. Yes, we currently give 3 separate baths right now!! It’s kind of funny thinking back to when he was born 2 years ago I remember saying to myself in reassurance that “it’s only 2 baths for probably 6 months, then they can start bathing together.” Two years later I am thinking the same thing that in 6 months maybe he can start bathing with his brother, heck maybe we’ll go from 3 baths down to 1!! So like any mother, I have hopes and dreams for my child, but mine for Brandon are the most basic things that many of us take for granted on a daily basis.
I bet people wonder this all the time and can’t get themselves to ask us but knowing his condition, why did we choose to have a 3rd kid and why so soon? Remember that I got pregnant shortly after we got his diagnosis so the gravity of it didn’t quite hit me yet plus we’ve always wanted 3 or 4 kids AND I’m not getting any younger so we had to have kids now or never. Even with knowing Brandon’s diagnosis as we know it today, we’d still would have wanted a 3rd child. We accepted his condition pretty quickly, didn’t let the weight of it linger or drown us into depression and self pity, but instead took action to get him the help he needed right away. It does hold us back at times but we find ways to keep on doing what we would despite his condition (like travel to Japan with 2 kids and while I was pregnant). God also blessed us with Nolan who in our eyes stands to lose out on the most because our priority and focus is constantly on Brandon. He has been nothing but patient, sweet and loving with his baby brother. Gets him to laugh like no one else can, retrieves his pacifier when he’s crying; reads him books at bedtime, relinquishes tablet screen time for him. I don’t think any typical 3 year old would be able to stand thru the jealousy that would easily manifest from a situation like this–let alone now having to share time with 2 other siblings. Nolan has nothing but love for both his siblings–truly been a Godsend!
Our ultimate goal is that Brandon can be as independent as possible when he comes of age. Even if he can’t walk at least be able to feed himself, communicate to a certain degree and be able to perform tasks that can enable him to hold a job someday. For now, we will keep at his 4 therapy sessions per week to give him the best chances of progressing as far as possible. If anyone has any experience, thoughts or advice to share we’d love to hear it! Thanks for listening!