99% revisited

I had a friend over the other day.  She has a son who is one year younger than Nathan and also has special needs.  We have this in common as well as both being Ebay and Amazon sellers.  We are both Christians and we both struggle with being parents of special needs kids.  There are other things that separate us but one of the big things is that her son's disorder is not progressive.  He has had surgeries and still has some limitations in mobility but is only improving.  This is a HUGE difference obviously but there is much common ground for us. 
We were discussing our house and how little room we have on the first floor.  Our steps are steep and Bennett cannot go up and down the steps.  Nathan is able to go up and down but I believe he could slip and fall at anytime.  (Mark and I have each almost fallen down the steps) Our discussion was around modifications in the home and how difficult they are for us as parents because we are not "supposed" to need them for our kids.  My friend has been over several times and with the sweetest of intentions does not really understand why Nathan and Bennett cannot go up and down the steps freely.  She has seen Nathan go up and down and believes him to be pretty steady.  Her son's physical limitations are different.  He falls often but it is rather due to loose muscles than tight muscles as is the case with Nathan and Bennett.  Well, seeing is believing because as Nathan was kneeling on a chair putting chicken fries on a tray...crash!  He fell completely off the chair, screaming and crying.  When they fall, they fall hard.  It does not happen every day but rather once a week.  One week it was leaving for school and he fell out the door, onto the concrete walkway.  Another week it was while spinning around in the kitchen when he fell and hit his forehead on the door frame and suffered a huge black and blue knot.  Of course when his teachers asked him what happened, he couldn't remember but that is typical Nathan. 

Anyway, my point is (yes, there is a point) that 99% of the time Nathan and Bennett are fine but it is that 1% of the time makes me crazy.  It happens just as we settle in and trust them to do more independently.  It keeps us (mainly me) hovering nearby instead of letting them go on their own.  It keeps me closing gates at the top of steps even though Nathan is six years old.  One slip and it might be skull fracture # who knows how many!  And it makes me cringe when they walk down the back steps to the car.  It makes it tough to find a balance between independence and safety.  Seeing is believing and my friend was finally able to see that when they do fall, there is a good chance they are going to get hurt.  I felt bad because she felt bad that she had minimized the risk but she did nothing wrong.  It is a difficult thing to understand unless you are around Nathan and Bennett.  

Part of me would love a one floor home so we did not have to worry about this but we love our house and it is kind of a scary time to try to sell.  An addition with a bedroom for the boys does not seem like a viable option as we would be separated from them which I am not crazy about.  We could have the stairs reconstructed to make a landing so they are not as steep but that would require a whole lot of construction and reconfiguration of the downstairs as well as cut into our already limited space.  I like this option but it may end up being more expensive then an addition.  We could call Extreme Home Makeover and have them redo our house but did I mention we love our house?  We could hope that a cure is discovered and they get better instead of worse.  That way as they get older and taller and their bones are not as fragile, they could scamper up and down the steps with ease and without a "spotter."  (And really, what am I going to do at the bottom of the steps spotting him, except keep telling him to focus on what he is doing.) So far that sounds like the best option!! 

Nathan's school picture is great but it also is a reminder to me that we have to find a cure for this disorder.  We have to stop the progression so that I can get my boy back.  I cannot lose him in his teens, early twenties or thirties.  Even forties are not enough for me.  I need to be able to tell this little boy that he will grow up, go to college, get married and have a family of his own.  He is my son and he is awesome!    

Libby

As I'm sure you all know by now I try very hard to make sure Libby feels special.  I really miss the time we used to spend before and after school while the boys were still at school at UCP.  We try to do things together still but really there is nothing like that built in hour or two every day like we used to have when I could give her the one on one attention.  She is a kid who really needs that.  Plus she is now sharing a room with her brothers (whole different story) and is on the top bunk so I no longer am able to rest with her.  This is when I got a lot of information and questions from her. 

Anyway, I know I am a phanatic (oops subconscious spelling mistake) when making sure that all three of the kids are treated as similarly as possible.  So much so that I am sure it drives some people crazy.  I have made obvious corrections in front of people and redirected people's attention to make sure they include Libby and vice versa.  If I think about from her perspective, it makes sense.  We have shirts for the boys, events for the boys, a post office box that we check for the boys, people asking how they are doing and more.  Even though we know that saving their lives is of the utmost importance, the fact that Fighting for their Future is all about fundraising for the boys must make Libby feel a bit left out sometimes.  When we were planning our Make A Wish trip, I drove the poor workers nuts making sure that Libby was included in everything.  Ironically, when the brochure came it was addressed to Mark, Phyllis, Nathan and Bennett.  Anyway, people may think that I go overboard with this, that life is unfair and the sooner she learns this the better but so far no one has objected.  Some of the special attention that Nathan and Bennett receive is built in, therapists, team meetings, fundraising and more so I will work as hard as I can to find a balance for Libby. 

One of the things that makes me very happy is that my mom and Libby have a very special relationship.  They are two peas in a pod with the things they say and do sometimes.  Plus they both love horses and Libby gets to go to MeMaw's house for a few days in the summer to go to Aunt Sherri's pony camp.  As I mentioned previously, my parents came down on Sunday and brought the kids some Christmas gifts.  They gave Libby a hooded sweatshirt from my sister and brother-in-law's horse farm, "Brownhill Stables"  Libby was beyond thrilled and has worn it two days this week (tried to go for three but I said we had to wash it).  When she was taking it off on day two she said "I guess I am special or something because Memaw and Poppop gave me this sweatshirt."  Ohh happy day!  I really want her to know how special and wonderful she is but sometimes I think we miss the mark.  I'm glad though that my mom manages to make her feel special and I feel so fortunate that they have a special relationship and both enjoy the horses and being outdoors.  Horses and the outdoors are not my thing. 

PS  If Mark and I tried to get her to wear a hooded sweatshirt, it would not happen.  She has major sensory issues so the fact that she can wear a something with the hood sitting on the back of her neck is testimony to how much she loves Memaw and Aunt Sherri!

One of the things

One of the things that really bothers me is that our boys have taken on the Progeria look.  Yes, they are cute but I hate that they have the look of a disorder rather than of themselves.  They look like all the other kids with progeria.  I don't know how to explain this any better.  It is a very strange thing. I hate that two of our three kids don't look like they are "supposed" to look.  I know that I talk alot about them not looking like us and how much I want that so badly but the truth is if we had three adopted children who didn't look like us but were healthy, I would not be feeling this way.  At least I don't think I would.  I know that I tend to be an "if only" person but in this case I think I am being realistic in just wanting my kids to be healthy. 

24/7 and 99.9%

I wrote this a few days ago and was not going to post it but changed my mind.  I am feeling better.  It seems to go in waves.  With Christmas around the corner, we are all caught up in the preparations which means lots of typical kid-like moments which are my favorite.  On Sunday my parents brought gifts for the kids which included sleds.  The kids began using them to lay down and watch television.  Then Libby decided it would be a good idea to pretend they were boats and she promptly had them all traveling to exotic places.  She has such a great imagination!  In the evening the local fire company brought trucks through the neighborhood with Santa riding on one.  We ran out to see him and wave and Bennett was so excited! 

We also celebrated Bennett's third birthday with minimal fanfare.  This is partially because his birthday's close proximity to Christmas and partially because he is the third child.  He got lots of Cars stuff as this is his favorite movie right now.  He would watch Cars (the first one) ten times a day if we would let him.  One day I could not get the movie to work he began having a meltdown.  In despiration I bought the movie on demand for $16 (also a result of being the third child).  Anyway, he was pretty excited about his "Happy Birthday" which seemed to last several days with packages from very sweet aunts, uncles and grandparents. 

Anyway back to my original blog post which I wrote last week:

As I was walking around Target the other day of course I notice all the little kids in the fronts of carts, boys mostly but girls too. I felt so alone. 99.9% of the world does not understand what we are going through. 99.9% of families have healthy kids. 99% of parents don't have to worry about the things we worry about. We are in such a minority, a minority among minorities. There quite possibly no one else in Target that has a child with special needs and there is most likely no one else in Target that has heard of Progeria. Lately it is the shoes that I have been noticing. In addition to being able to wear crocs and boots, other two year old's have these monstor size feet! My Bennett has teeny tiny feet and has not outgrown a pair of shoes in more than a year. At his age he should be going through several sizes a year.

Every minute I am awake my mind is consumed with sadness about the boys, their condition and their limitations. I have convinced myself that it is because we have a second child with progeria, not just one but two. I am constantly focused on their progeria-like features. Obviously it is my choice to allow myself to wallow like this but I seriously don't know how I even function under the pressure of all these thoughts, of noticing the changes in their appearance every minute.

We have noticed that Nathan has been getting taller.  He is able to reach the light switches when he stands on his tippy tippy toes which is awesome!  We thought for sure he had gained weight.  I have to lift him into the car (yes, my six year old has to be lifted into the car) and I have been thinking that he is surely getting heavier to lift.  Well I weighed him and he is not even 31 pounds yet.  So he possibly gained 1/2 pound but nothing noticeable.  Plus with his height increase, I assume this means he has gotten skinnier. 

Its just so strange that there is no one else out there like I us.  Sometimes I wish we were a generic family, Joe Schmo family, to be seen on any commercial or magazine page. When there are so many activities going on I forget about progeria.  Then something reminds me that they have this horrible disease that is rapidly working against us.  My heart aches for me, my husband and my kids, all three of them.