Blog posts by mommy Shana and mommy Jess

Three children, two moms, one C.P. diagnosis....and a partridge in a pear tree.

Friday, May 21, 2010

Greta's milestones by mommy Shana



Since your birth, every visit with your Dr. we talked about milestones that you and your twin should be reaching. We went over the growth chart for you and your brother (your always in the 90th, he in the 10th to 50th), and she would ask us if you two were reaching the milestones that were age appropriate, and we would discuss how to help you guys along. After your diagnosis at 9 months, the conversation about milestones for you, has pretty much deceased. Gus isn't pulling up to stand yet, which is a milestone that is concerning for a 13 month old, so we are asked to watch and wait and see if he too may need some type of P.T. for his low muscle tone. We also wait to see if your brother doesn't walk at 15 months. Some kids are slower than others to reach certain milestones, and even though Gus is a little slow and didn't crawl until he was 12 months old, he did reach that milestone before alarms went off, and most likely will continue to be just a little on the slow side.
What I have learned about hemiplegic cerebral palsy, is that reaching milestones on time, for you, is no longer a concern. We don't know when you will crawl, walk, stand, clap, raise your arm above your shoulder, hold or feed yourself with a sippy cup, etc. With your brother there is usually some type of time frame that is typical. There is no time frame for you as far as we know. We hear children like you walking at 17 months or even 5 years (average around 3). We still don't know if you will crawl before you walk, or even if you will crawl at all. For many milestones, we just have no idea. It is very common for typical babies to reach developmental milestones at their own pace, but you will have long passed any of these milestones on the designated time scale, and at this point, not reaching them is pretty much expected.
In some ways I feel relieved. I don't feel that mom guilt like I'm not helping you enough or teaching you enough, or not spending enough time with you. We know why your not reaching your milestones on time now. Your schedule is full of P.T. sessions and O.T, botox and other forms of therapy so I know that we are both doing the best we can to help you reach milestones. It's almost like getting a "get of jail free card" when it comes time to talk about milestones and you. With Gus I often feel responsible (though his 10% short stature has nothing to do with me!), but since he tends to just fall behind a little in only a few areas, I mostly consider it normal and give him and myself a break from the guilt trip.
This last Dr. appt. which was your one year check-up (though you were pushing 13 months), I did start to feel that your other milestones were not mentioned and/or under appreciated. Not so much by us or the Dr., but just by the "basic baby" milestones that are common for children without disability. So for you I have made a milestone chart designed just for you! Of course I can't predict anything or make a fair time frame for which you should complete them, but what I can do is record all the new things that you learn to do, and when you learn to do them........so here are your latest milestones!
1) Spinning: You started this milestone when you were about 11 1/2 months old. While sitting, you take your right foot and propel yourself around in a circle. It's the cutest thing I have ever seen! You do it better every couple weeks. You get faster and faster with time, and have now mastered spinning in both directions! You don't use your arms at all. You just take your strong leg and have it pull the rest of your body in a circle. Your brother doesn't spin like this and I don't think he can. So this milestone is all yours!
2) scooting: Sure, a lot of babies have been scooters. Even I used to scoot before I crawled. However, your scooting is so much more amazing! You move your entire body by stomping your good foot down, then use it to pull the rest of your body. No hands or arms at all are used! I hear this thump thump thump sound, and I know it's you moving where you want to go. It again is so darn cute! You even do it with a little hop motion. I have never seen a baby scoot with one leg across a room with the other one limp and with no arm help used at all. So again, this one is all you kid!
3) Whipping : Now this milestone is a little more subjective, like catching or throwing a ball. Some kids will learn to throw or catch a ball early, and for many it won't really matter when or how good one does it. If a child doesn't learn to throw at a certain speed, it doesn't ring off any alarms. However....I have NEVER seen a baby throw an object as far or as heavy as you....EVER! Your right arm is like a professional pitcher, mixed with the arm of a bodybuilder. It's strong, fast, and has hurt the hell out of pretty much everyone in the family at least once! If you get your hand on the right toy, I have often made sure the family was in a safe place. I bet you could throw a tennis ball as far as me right now, and I'm not even joking. You only use one arm most of the time, and it really shows! Although this crazy milestone is at the cost of your other arm, and part of the reason you have such low tone and weakness in your left (you neglect your left arm a lot) I just want you to know that I wouldn't be surprised if you could pitch the best fast ball in the world right now!

This year you didn't meet your milestones, but it's going to be ok. I've written down the ones you accomplished and that show me that you are making your own way. It's ok if you don't reach the milestones your supposed to reach, or that Gus reaches. What's important to me now is that you are reaching your own milestones, your way, and are doing a damn good job.

Go Greta!

Monday, May 10, 2010

Mother's Day by mommy Jess




A quick Google search disabuses me of a notion I held dear, that mother’s day was just a made up fairytale holiday intended to fatten the pockets of Hallmark CEOs, and rather is something of an activist holiday with roots in ancient Greece. Not the first time I’ve been wrong (quiet mommy Shana) and probably not the last.

At any rate, it seems like at this age mother’s day is less about honoring us, your mothers, and more about thinking about motherhood as an institution. People are fond of asking us what we do on mother’s day (the general public seems to think we must choose one of us to act as “mother” for the day to get cards and presents) as though our traditions would be dramatically different. America in general is fond of breakfast in bed and sleeping in with useless presents and sentimental knickknacks peppered throughout the day. I can’t say we do that, but we do try to get each other things we like or things we need as a way of saying “hey, you loved these kids when they stank, when they cried all night, when they refused to wear pajamas for the 100th night in a row”. “You shared your expensive ice cream you had been saving for weeks, you used the money you had stashed for a tropical vacation on the good preschool, you put on sunscreen, and play in the sand, and buy the expensive juice with the better vitamin content”. And for that I salute you!

Greta, mothering you as a disabled child is a bit different but it is also a lot of the above. Just because we have an extra dash of orthotics and various therapies doesn’t change the nature of what we do. In our backyard our mothering of you doesn’t look that different (“stop biting your brother”, “quit eating sand”, “look Greta, a bird!”) it is only in public when your disability changes things. But before that gets you down consider that this is probably true for every one of our family members. After all in our backyard we feel like a completely normal family but once we leave it becomes clear that two moms is not the norm. Motherhood changes depending on location or spectator, but we don’t change, just the view from the outside. We are still the same people doing the same thing (“Gus quit pulling your sister’s hair for goodness sake!”)

So happy belated mother’s (mothers) day to all moms out there- here’s hoping you got what you wanted for the holiday in your name(s).

Saturday, May 1, 2010

Jack's got her back! by mommy Shana





Since almost the birth of the twins, Jack decided that Greta was "his" baby. In fact, he called both of them Greta until Gus was about 3 months old. Anyway, It seems that Jack knew Greta needed the big brother more than Gus, he new before us....always protective of her, and still, always siding with her over Gus. I wish I knew what it was about her that drew him to her so quickly. He showed her the ropes early on, showed her books, asked to hold her often, took toys from Gus to give to her.....and still, if the two are fighting over toys, Jack steps in and gives the toy to Greta. In Jacks defense, Greta usually has it first and Gus crawls over and takes it. But, Greta is quite the toy hoarder and is a master manipulator. She wants everything she see's, when she see's it, and will stop at nothing to get it. She will point and scream until you get it for her.....and of course we always give it to her, it's not her fault she can't crawl yet and Gus can, so we often give her an extra boost. She may be physically challenged, but she certainly isn't lacking the manipulative skills to get what she wants, that's for sure!

Now, don't think that Gus is in anyway missing out or being left out. Jack is constantly making him laugh, and he and Greta also have been known to make each other laugh as well. I have noticed Gus and Jack beginning to form a stronger bond, so he certainly isn't left of the loop. In my opinion, with Gus's history, I'm surprised Jack plays with him as much as he does. Once on a trip home from the zoo, he cried for 45 minutes straight......we have tons of horror stories about days and nights that involve Gus's constant crying....but we all moved forward, allowing him to be a part of our family, despite ruining almost every family trip, and preventing many others from occurring in the first place. He's a baby so we are willing to all forgive him....we are just not ready to forget just yet!

Anyway, what I want to say to you Greta, is that your brother Jack is a big part of your journey. He is your protector, he defends you against your hair getting pulled by Gus, he always returns toys to you that Gus comes and takes, and he always shares his food with you, even food your not supposed to have. So although it may seem sometimes like Gus has the advantage since he can easily use both arms in combat, and because he can get away from you and also charge at you.......I just want you to know, you have Jack. For some reason he has chosen, on his own, to be your defender, your protector, your advocate, your big brother. Yes, it's unfair that Gus is always at an advantage. But rest assured, you got Jack on your side, always making sure your treated equally, always making sure you get what you want.

So Jack, thank you for being the big brother that you are. I didn't know it was even possible for a first born to be so accepting of younger siblings, especially 2 at once! You make both your brother and sister laugh on a daily basis, and you are always so happy to see them every morning, and after every nap. You always make sure to remind us not to forget them on outings! Though we have never forgotten them, you always want them to join in the family fun.
You surprised me big time with your ability to adapt, you did so better than your mommies. Just like Greta, you are my little hero.....so thank you buddy.