I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Wednesday, February 29, 2012

A Group For Zach

For the past six weeks Zach's enjoyed being part of a Sibling Support Group.  There were five kids total in the group and they each have a sister with special needs.  The purpose of the group was to provide the kids with an environment where they could be with other kids who dealt with the same issues having a special needs sibling and to give them an arena where they could talk openly and share about the issues and feelings that arrive from having a special sibling as well as to have those feelings validated.

A mom that we know, Britt, is a clinical social worker, AND has grown up with a sibling with special needs and she's had an interest in doing a group like this for a while.  Can you say "win/win"?!?  Britt not only provided an amazing experience for our kids, but she did it for FREE.   She gave up time being with her family to spend time with our kids.  And they all LOVED it.  And while the kids were in their meeting, us moms were able to go to a Mexican restaurant and have our own little group therapy.  I'm so thankful for Britt and for the experience she was able to give Zach.  Every week he has looked forward to going and I think all of the kids were a little sad that last night was their last session.  Britt ended the six weeks with a trip to Carvel after their meeting and the moms were presented with a little book they had been working on about their sibling....and I think we all got a little choked up.    While the kids were eating their ice cream and having a blast, Britt shared some things with us and there were definitely tears shed.  I am SO THANKFUL that I have such a great group of moms that I get to surround myself with.  I learn and get so much support from these groups and it makes me so happy that Zach got to experience that for himself as well.   We decided that this has been such a positive experience for the kids that we're going to keep them meeting once a month.  We're going to take them to the restaurant that we've been going to and they can sit at their own table and talk and the mom's can sit at their own table so the kids can still freely share whatever they want.  They've got a bond that they share and we all feel so strongly about continuing to give them the platform to continue to feel like they're not so different because of their sibling and to talk about whatever comes up - the good, the bad and the ugly! :)

I think we need to come up with a really cool name for their group....but here they are at Carvel.

Thank you Britt for doing such an amazing thing for our kids!!

Thursday, February 16, 2012

Rough Week - Kind of a Rant!

Last week was a rough one.  I need to preface that this is a complete whine post!  

Tabitha's son was hospitalized so we were without nursing for 9 days.  It's hard to explain, but I take for granted having Tabitha and how much she TRULY frees up time for me.  And it sounds kind of like an oxymoron to me - how can I take for granted something I don't want?  Who would want to have a reason to want/NEED nursing?  Who would want someone in and out of your house ALL the time?  Who would want your kids, and yourself for that matter, to get so attached to someone only for them to inevitably move on?  Not that I think Tabitha is going anywhere anytime soon, but the dynamics of nursing are never easy.   Last week was just a huge reminder of that.  The nursing agency was happy to send out a replacement for the week, but when the nurse they were going to send out called I did NOT get a good vibe from her.  She wanted me to work around HER schedule, she sound annoyed, and she had no desire to come out and meet Alex first.  Alex is quite quirky, so it does me absolutely no good to just have a body at school with her - they need to understand her and her schedule, so I declined.  Alex gets off the bus at the same time Zach needs to get picked up from school - so trying to get her off the bus, loaded in the car, up to Zach's school, unload her, bring her in the school while she's happily yelling the whole way causing lots of stares just stresses me out.  On a typical day, Tabitha is making Alex lunch and feeding her when I get home with Zach and we sit down to do his homework. On Monday night he had his sibling support group (more on that later), Tuesday he had piano lessons, Wednesday he had his class at church, Thursday Alex had physical therapy at 2:00 (Zach needs to be picked up by 2:15 so I obviously couldn't be in two places at the same) and then she started with her new speech therapist at 3:00 which meant we weren't going to be home until 4:30 - so there was a LOT of juggling and scheduling changes that had to take place and I'm very thankful to my friends who helped me out last week.  Sometimes I wish so bad that Alex could entertain herself, go pick out a toy and just play by herself,  or get around someway on her own.  Having her 100% dependent on one of us for all of her waking hours is HARD.  And I know people have multiple kids or have it worse than I do and would probably say get over it, but having to juggle two high demand kids at the same time when it's not the norm takes a lot of adjusting to.  I'm grateful that last week IS NOT the norm, I really am, but that didn't make it any less stressful!   I think it goes without saying I gave Tabitha a HUGE hug when I saw her on Monday!!

Tuesday, February 7, 2012

The Gift of Time

 “Time ~ the most precious gift one can give. Each moment is unique because it will never happen again…the gift of your time spent with others is the ultimate display of unconditional love.”

Robert W. Merriweather

Back at Christmas time Dana and I decided that we didn't need anything and to exchange just for the formality of it would be wasteful.  So I decided to give her the best gift I could think of....time.  I made her a certificate that entitled us to spend an entire day together doing whatever we wanted to be followed by an evening stay at a local hotel.  Just her and I, no kids, no interruptions!

Her son was flying to New York this weekend to be with his dad so she asked if we would could cash in our girl time certificate.  I checked with Aaron, cleared our schedule and we made a plan.   We decided we both do enough running around during the week that we just wanted LAZY time...I don't know who was more excited about just doing 'nothing'!!

It's been a long time since I had such a relaxing time.  We went out and had an awesome lunch, stocked up on some provisions for the hotel and went back to the hotel and talked and talked...threw in some mindless TV and then got ready to go out to dinner.  We enjoyed an awesome band and talked and talked some more. 

My favorite part...I got to SLEEP...A LOT!!!  We got up Sunday morning, had some breakfast, watched some more mindless TV and took a NAP...oh how I wish I could incorporate one of those into my every day life!!! 

I'm so thankful for my best friend - someone who knows me inside and out - someone I can be totally comfortable with just sitting in silence, someone who never judges me and just loves me for who I am - the good and the bad!

And it goes without saying that I'm VERY thankful to my husband who recognizes the fact that sometimes I just need a break and allows to me to decompress.  He was QUITE happy to see me walk in the door though and promptly declared I was 'back on duty'!

Friday, February 3, 2012

Nutrition Appointment

There are so many things I want to blog about but things have been so crazy and there just hasn't been time.

Yesterday Alex had her nutrition appointment at Children's Hospital.  For some reason our supply order of her formula for her feeding pump had been cut and we weren't even receiving enough to give her the 2 cans a day that she gets - so forget throwing in extra cans if she doesn't eat enough during the day, or in the case for the last month or so being sick and having zero desire to eat.  I love how insurance and costs seem to drive the supplies we get and not Alex's needs. 

Anyway - so we went for her nutrition appointment to discuss a few things and to get an increased order for her formula.  It seems like Alex has lost some weight, which doesn't really surprise me given her illnesses and hospitalizations since the beginning of December.  BUT - she was in the 25% percentile for her weight a year ago and she's now dropped down to the THIRD percentile.  I think that's a pretty drastic drop.  She's grown a lot in the last year too and she's now four and half feet tall!  Holy cow.  Her current weight is 53 pounds and kids her age and height should weigh approximately 64 pounds. 

We are having a lot of 'bathroom' issues, but that's not new - she's had constipation issues since birth.  Because of Alex's overall low tone, especially in her trunk area, it only makes sense that her bowels are low tone as well.  We have spent YEARS trying to figure out the right combo of medicine, fiber, water, etc. to keep the issues at a minimum, but it's still a constant problem.  And to be honest, it is not fun for her or me on a weekly basis to have to deal with the problem.  I'll leave it at that and spare the gory details.  So we talked a lot about that and came up with some other ideas to help her there in addition to what we already do. 

While there was some slight concern about her weight, the nutritionist is taking into account Alex's lack of mobility, meaning she's not as active as other kids her age so other than therapies, she's not burning as many calories a day as her typical peers.  We also discussed how it's really important for us as her care givers to keep her at a healthy weight, but not let her get too 'chunky' because at the end of the day, her lack of mobility means a LOT of lifting for us.  I can only hope and pray that we can get her walking with a walker sometime in the near future because the bottom line is she IS going to get heavier and heavier.  Alex started physical therapy at the age of 13 weeks - I never thought at 10 years old she still wouldn't have any mobility.  She can't crawl, she cant get herself into a sitting position, she can't pull up on anything, she depends on us for ALL of her positioning needs.  Ugh, these are the things I don't like to think about.