Reaching For Milestones

That old saying that "Slow and steady Wins the race!" is so true. From our own experience, I know how poignant it can be for parents of children with special needs to cheer them on at every turn. And from reading the daily blog diaries of these parents, I share in their afterglow of pure joy at seeing our kids succeed. In our home, Sarah Bear continues to improve little by little. It seems like the smallest accomplishments take forever to achieve. And yet, when she hits a milestone, there is no better feeling in the world! Since Sarah was not predicted to do much at all, I take pleasure in the fact that she is proving the doctors WRONG!

Last week, Sarah started trying to crawl. After having worked on it for so long, it just happened -- at Sarah's pace! That's the thing. Sarah is ready when SHE is ready, and not before. While she undoubtedly has a strong will to do things, it's just on her schedule.

And so, she continues to improve with her undertanding of language, and can press a button on her toy when she wants to hear music (which she loves) . She also has started saying "Da Da," and even shouts "DONE!" when she finishes a meal. So, when I have my moments of "Why did this happen to Sarah?," I think about her smile and how she laughs when I tickle her. Then I remind myself what I said from the first day she became ill . . . if she can be happy, then that's truly all I need.

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Posted by Sarah's Mom at 11:12 AM Permalink

Velvet Throws

Do you have trouble as we do decorating "tastefully" around durable medical equipment (DME)? -- the ever-growing assemblage of gait trainers, positioning equipment, bath and Hoyer lifts, standing aids, portable ramps, scooters, and wheelchairs? And that's just for starters. Add in the tumult of three energetic little children, fondly dubbed the "wrecking crew," their toys and improvised playthings (just about anything will do! for merriment), and there's a growing conviction that we need more space and our house is too small.

At first my husband and I considered adding on an addition. We also considered velvet throws. Velvet throws were my mother-in-law's suggestion to cover up the DME and any other daily detritus that couldn't be picked up, swept away, flushed or otherwise disposed of out of sight, but in a manner, of course, that seemed purposeful and aesthetically pleasing. She had learned this trick as a young girl, it seems, when she used to visit an elderly neighbor who lived in a Queen Anne Victorian mansion. The mansion had been built by the old woman's forebears who were railroad magnates, and boasted 10,000 daffodils blooming on the lawn every Spring (and in the Winter, gaily colored rags tied on to the deciduous bushes banking her driveway to "punch up" the appearance of pale skies overhead). Anyhow, the house staff had a multitude of velvet throws -- ruby red, terullian purple, gold -- and spread them about purposefully to tidy up the place for guests, recounts my mother-in-law with laughter.

For us, it's "oNay" ("No" in Pig Latin) on the throws. For now, we're thinking of what changes we need to consider to make our living space more workable -- changes designed specifically for Sarah and her Daddy, too, to ensure that we end up with the features that we must have (and, hopefully, can afford) for the future. It may be just easier to move. While we are fortunate now to have one-floor living in a ranch-style house, its footprint on our property is a big limiting factor, making it either too difficult or prohibitively expensive to adapt. Yes, we could add on a floor and a two-story home can certainly be made wheelchair accessible, but the space and money required to install an elevator is not something we have.

Yesterday, the kids and I checked out a nearby property where the house was delapidated and the seller anticipates its being torn down and a new one built. I looked at it with pictures in mind of different architectural plans drawn specifically for people with disabilities in mind. Unfortunately, the lot, while it was in a very desirable neighborhood, did not support any of them. So, we will keep looking, I guess. I should say that, while cramped, our rancher is fortunately what architects call "visitable" -- a term meaning that our house meets three design criteria:

• a zero-step entrance,


• doors with 32-35 inches of clear passage space, and


• one bathroom on the main floor with wheelchair access.

We also have an open floorplan in the main living areas that allows a bit more ease for a person who uses a wheelchair or walker to negotiate. (Let's see -- that's Sarah, Daddy, Nana Anne, Great Grandma, and a cast of family and friends at various times in recovery from running injuries, knee replacement, therapy for pelvic instability, and more.) What we're shooting for, though, is what is called "Universal Design" where even more architectural features are standard, with a vision of creating a barrier-free, "lifetime home" that allows it always to remain functional.

Heading home, we packed it in and stopped by Nana Anne's to enjoy her pond and geese. The Fall colors don't get better than this!

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Posted by Sarah's Mom at 12:45 PM Permalink

All In The Family

This was just too good not to share -- a picture of Sarah Bear next to a photograph of her Nana "D", without whom this household could not run. Hmmmm. . . a great idea . . . Nana "D" being recruited to be a regular contributor to this blog. We like it!



It's all in the family, right? 0 comments

Posted by Sarah's Mom at 2:52 PM Permalink

The View From Pumpkinville

Well! Halloween is upon us, when "all the ghoulies and beasties go bump in the night!" (Oh my!) I wonder how many trick-or-treaters will be out tomorrow night for fun, fancy, and candy.
Here's the scene at Pumpkinville. where our family goes each year to shop for a pumpkin to carve, although we have yet to make toasted pumpkin seeds, which Sarah's daddy says are very good.

We'll be watching at our door, of course, to greet all the kids in our neighborhood tomorrow, hand out the goodies, and compliment everyone on their costumes. It's always so much fun to see imagination at work and what people decide on to wear. Last year, for example, Sarah and her twin brother, Joshua, dressed up as Little Red Riding Hood and the Big Bad Wolf. Just two twins like two peas in a bucket! Here they are below:

Yep, we're pretty sure they're just . . . .

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Posted by Sarah's Mom at 3:07 PM Permalink

The Reality We Live With

There is a blog that I follow from time to time and an entry from a mom who has a daughter who not only looks like Sarah, but has some similar issues. I posted her entry below along with her Website because her post really hit home for me and describes the way I feel.

From http://babybrookie.blogspot.com/

"I spend quite a bit of time focusing on the positive in this blog. You'll notice that there are large gaps of time between postings. We live a good life, a happy life, a life filled with love and laughter and all those things people hope for. I won't take away from any of that for a second. With that being said, I feel as though I sometimes misrepresent the reality we live with. I don't know if I do this for everyone else or for myself. Perhaps I feel guilty being entirely realistic. Perhaps I don't want to put it all down in writing, because that's admitting it to myself and facing the truly difficult life we live. And I thought to myself . . . how could everything look so perfect, yet be so miswired inside. How could this life be so cruel to my little angel? Her long dark lashes were resting so perfectly on her pink cheeks and her curly hair lay peacefully on her pillow. When I look at her like that, I can imagine her opening up her eyes and smiling at me, saying "Mommy" and reaching up to cuddle. I can imagine her hopping out of bed and running to Julia's crib to see if she is awake. That's what Brooke wants to be doing!

I am thankful that my little girl does smile. She may not look at me when she smiles, but she smiles at me. She is saying "moma". She likes to cuddle and hug. I am so thankful that we can share those human necessities. I realize that so many people don't get that from their children. I don't take it for granted. But my God . . . I want her to walk. I want her to not be frustrated because she can't crawl and speak and digest her food. She is on this diet that we are so grateful for. Without it, she would still be seizing multiple times a day. Without it, we may never have met the Brooke that we know now. Again -- with that being said -- why can't she live without this diet that makes her stomach cramp, constipates her to the point of needing daily Miralax, tastes horrible, and restricts her eating so severely.

Why!!

Tonight she threw up for the 2nd time today. This simple head cold is a lot for her inexperienced body to handle. She struggles with the mucus because her brain cannot tell her muscles to fire correctly and expel it from her lungs. She gags and cannot stop herself from loosing it all together. We take a little Robitussin or NyQuil and move on with our day. Brooke cannot take these medicines because they contain sugar and that would put her out of ketosis.

She's asleep now. We have the head of her bed elevated. We have blankets rolled up holding her in place. We have her hooked up to her pump with a slow drip of water and a Farrel bag that allows gas to escape from her stomach as she sleeps. That is our reality tonight. One last time -- with that being said, she lays there with her long dark eyelashes resting on her beautiful cheeks. She has her Binky in her mouth, and she is hugging the teddy bear that lights up her bed at night. She looks perfect. Minus all the tubes and strange bed, she looks so perfect. Like she was supposed to end up with this hand in life. Like we were all supposed to be blessed with her. Then again, she also looks like she should be able to crawl out of her sleep safe bed in the morning and into our bed. Like she should be able to wake me up to make her sugary cereal or pancakes.

We have so much to sort through on a daily basis. This is an exceptional life that we live! We have been given a chance to experience something most people never come in contact with. Tragedy mixed with pure joy and love. They can all be wrapped up in one congruent package. I can feel the worst pain and feelings of loss and anger and in the same day I can feel so much hope and certainty. Quite amazing, this life I have been given. Thank you for choosing to be a part of it. Thank you for allowing me to share it with you. And from now on . . . thank you for letting me be very honest about it all -- for all of our sakes."
Posted by Brooke DeMar

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Posted by Sarah's Mom at 1:15 PM Permalink