2013 was a hard year in a lot of ways: diagnosis, seizures, Seattle, surgery, and more. On New Years Eve, Jeff turned to me and said “I know 2013 was tough, but we have each other and will always.” So as hard as 2013 was, we still have a wonderful family and are lucky in so many ways. So, we are hoping 2014 will be easier but if not, then we always have each other and in the end that is all that truly matters.
2014 hasn’t lived up to all its glimmery hope so far. But we aren’t even a month in, so the jury is still out. I foresee this year being hard in many ways, but there are some bright spots out on the horizon. Hard because we will hit the mark that seemed so far away when we received C’s diagnosis. His two year birthday. All the doctors said we don’t know much now, he is too young. At around 2 years old we will know more of what the future holds. We have started discussing adaptive equipment with our therapists. Seems so early, but we have to start getting prepared for C’s needs as he grows and gets much too big for all the “baby stuff.” This means a special stroller, so C can be more easily integrated into his environment. For example, playing with his peers at daycare. It is kind of hard to interact if you are doing it from the floor staring at the ceiling, when those peers are off running around. We will also hit our year anniversary of C’s diagnosis, that will probably be somewhat difficult from what I hear. However, many other PMG families have told me the first year is the hardest. So with that, maybe 2014 will also hold something more, something I don’t know yet. Once that day passes, will it feel different and will we be better equipped to handle everything? Who knows? I guess we will know soon enough.
We are all ready for this winter to be done already. With Spring, comes the hope of C not getting sick with every bug and virus. C has been hit hard this winter, poor kid can’t catch a break. After Spring, SUMMER! C loves to swim, so hopefully we can partake in that activity as frequently as possible. Then at the end of summer, C will be a cousin again. Very exciting! And we are planning a family trip (dogs included, oh my). We have recently learned traveling by aeroplane is somewhat fraught with difficulties. So we are planning our first ever car trip. We have decided Lake Michigan holds the appeal of beaches, but not the long haul of an actual coastal beach. This will be very interesting, this is neither Jeff’s nor my idea of ideal travel, but who knows we might decide to buy an RV next year. AHHAHA, who am I kidding, that will NEVER happen.
So 2014, we will see. Regardless, Jeff and I are very blessed to have each other and even more blessed to have Chamberlain as our son. We will continue to give C every opportunity we possibly can. And help him learn and help his brain create those pathways.
Making a pregnant lady cry…thanks for sharing this update. I love you guys!
Thank you for sharing your update. Chamberlain is so fortunate to have parents like you!
Hello, I saw you on the PMG group. Our Sophie also has PMG (bilateral perisylvian). She is 3.5. She doesn’t talk (she used to though which isn’t typical in PMG kids) but she does walk (started at 19 mos). She’s not as coordinated as her peers but continues making progress. We are working on PECS. She also has autism though which complicates things, in her case more so than the PMG really. Anyway nice to meet you and your son. Good luck! Feel free to check out our blog too 🙂
Thanks for checking us out. I will check out your blog. I follow Sophie’s Facebook posts.
Jenna…you & my man, Jefferry Michael are an inspiration to me…lil C is one lucky dude. Please give Jeff a hug for me. I look forward to the next time I see you three.—All the Best, Chris
Jeff and Jenna, What amazing parents you are to our precious little guy. He is greatly loved and is such a good little boy, even he isn’t feeling good. The 3 of you are surrounded with love and hopes for a brighter 2014.
Gosh Jenna and Jeff, somehow your blog has eluded me until now. Love you all three and am glad to finally be part of this through Chamberlain’s blog. I too hope that 2014 is a much better year for you.
Jenna, that was so nicely informative. I think 2014 will hold some new adventures in your lives and we’re hoping they’re all positive. Yes, and a trip to Lake Michigan will be great. I used to live in the Great Lakes area, and it has a lot to offer. BTW, I love my photo of little Chamberlain that you sent at Christmas. I show it to everyone….he’s such a doll. Keep us posted, and all the love and luck in the world to you three.
We appreciate the comprehensive update on our sweet little guy. He is such a happy little fellow, due in large part to all the love and support he gets from such wonderful, committed parents! You are both super! We celebrate with you all the positive developments, and hope 2014 will be a year filled with many good times for all 3 of you. We love Chamberlain with all our hearts, and his Mommy and Daddy too!
Your doing great Jenna! The first year is definitely the worst. The second is still hard but you can get through anything with your attitude of being grateful for what you have. You rock!