Ok, so you are NOT ALLOWED to judge me for this post. Of course you can do whatever you want to but I ask that you take all this with a grain of salt. I am an exhausted Mom of twins after all. ;>)
So last week I did a little shopping online. I wish I could say I was shopping for clothes for the girls, a new coat for me, sheets to replace my ripped ones, and a million other more fun things. Instead I was shopping online for a walker for my daughter. This is a couple weeks after I was shopping for a helmet. I know it isn't a bug deal but shopping for a walker (that thankfully a wonderful local foundation will be footing the bill for) is something that no Mom wants to ever do.
Lately things with Abby have been tough. She is shaking more than normal. Her head size is back up to the 90th percentile (while her body lags below the 5th) so we have to worry about a bigger increase in cerebrospinal fluid. She is not doing that great at following commands. Her tone and balance continue to lag even with increased PT. It is most likely a phase. At this age quite a bit is going on neurologically. Unused neural pathways continue to die off. Mylenation increases in the brain. And a host of other developmental milestones occur. Each stage that we pass through is a source for worry. Will she scare us (like she is now) and then cruise through it a little late? Will we hit a stage where we see more disabilities start to unveil themselves. We live with a fear in the back of our minds that we might hit a wall.
We have one daughter who is a typical 15 month old girl. She runs, she plays, she follows verbal commands. She thinks she is about 5 years old instead of 1. Then we have another 15 month old who crawls, pulls to stand but makes no efforts to stand, has no balance or tone, shakes a lot and looks like she is 9 months old. She is amazing, don't get me wrong, but sometimes her disabilities are just so glaring. I guess I am now talking in circles but it can get a little overwhelming at times. Brian works a ton with the new job so all of her PT and doctoring falls on me. I feel like I am doing all I can but is it ever good enough? Can I ever give both of these girls everything they need?
The last thing I will leave you with on this topic is a wonderful dose of reality prescribed by my Mom. I mentioned how much it sucked that I had to get Abby a walker. She very matter-of-factly reminded me that I didn't have to shop for a wheelchair. The doctors told me when I was pregnant that Abby would not likely crawl, walk, talk or do any of the things she is doing. So that provided me with the perspective I needed.
Ok, enough whining... geeze. Can't stand to hear myself bitch and moan. Ugg!
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4 comments:
Kristen - *HUGS* I'm sorry that you're aching right now... I'm sorry that a lot of the PT and doctoring comes down to you (in addition to everything else you do during the day!). I hate to point something out that's obvious to you but your mom is right - Abby has come so much further than her doctors thought she would... and I'm sure that a lot of that has to do with you and how you nurture her! I think I've told you this before (and it's certainly easier said than done) but God only gives you what you can handle. Considering how much you have to juggle I'd say that God certainly has faith in you...
Why don't you get someone to watch the girls for you one day and take yourself to a spa or even just a cozy bookstore so you can unwind... Try to do it at least once a month so you have your "me-time" to look forward to when things seem impossible...
Abby is a beautiful little girl (and so is Gracie!). She's very lucky to have someone who loves her and cherishes her as much as you do! Just remember that she gets her strength from you!
Thanks Nicole... I needed that. And some me time sounds fabulous!
I can relate to what you are going through.
I have 12 month old twin boys who had no issues during pregnancy or after birth - but now we are finding out that one of our guys likely has CP. He is just sitting up now - not crawling or bearing any weight on his arms, while his brother is crawling all over the house like a brute.
As a parent, it is very difficult to deal with having twins who are so very different - almost like having two children different ages, but everyone expects them to be the "same". Even when you are "prepared" for it, it is still hard to deal with.
Do not at all beat yourself up for feeling frustrated and discouraged. Being a parent to a child with disabilities is difficult under even the most perfect of circumstances. And yes, as she ages her disabilities may seem more profound but then her strides will seem more amazing when they occur. I'm a "worst case scenario" person (sad as that is) and in your case, I guess the worst case scenario is that you end up with a daughter who is loving, fun, engaging, and interactive. The rest, as one commenter already stated, is as much as God knows you can handle. And unlike many children with disabilities, Abby will always have a loving partner in crime in Gracie, who's ability to navigate her sister's needs will in her create a kindness and patience and strength that will likely always impress you.
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