Careful what you wish for

Every year for the past 3 years we have gone to Kalahari Water Park.  It started out as Scott having a very rare day off three years ago and us finding a way of avoiding a day of "fixing up the house".  My friend had facebooked about having an awesome time at a waterpark - I emailed her that morning to find out where she went and we had reservations and were on our way to the indoor/outdoor waterpark resort just a couple hours later.  Needless to say we LOVED it!  More importantly, the kids Loved it, and even more importantly, so did Annie!  Woooo Hooo! Score!  This was fun for the whole family!  So the next year we booked without hesitation and asked lots of family to come join us!  Thankfully, they DID!  Even MORE fun!  This year, with the economy and some extra expenses not budgeted for, we didn't think we would be able to swing our 1 night away with the family.  In the end, we did, and let me say that we are so very happy that we were able to do that.  Our kids had a blast!  And Annie, true to form, did too - once she was acclimated of course.

We got there at about 2pm on a rainy Saturday.  Annie, having had a very pleasant drive with us, decided that she was NOT happy to be in this place.  So, as Scott and the kids got all the bags from the car and got dressed into their bathing suits I sat with Annie trying to settle her down praying that God would help Annie calm down and that she would have a happy time while we were on vacation.  When Annie is happy, the family is happy!  So, as Annie settled into a nap I sort of day dreamed away at an easier life.  I saw sweet Annie having a blast running through the waterpark with her little sister, free from the debilitation of Rett Syndrome - screaming "watch me mommy, watch me!'.  I saw my Annie running up the stairs with her brother on their way up to the waterslides to ride on together and then scarfing down pizza (feeding herself!) and asking for snacks and juice boxes.  What a blessing those day dreams were, although they left me quite sad when I woke, wanting so badly for my Annie to get her independence back.

The next day and a half left us with a sweet, happy, content Annie!  A blessing and an answer to prayer for sure!  But then again, this was the first year that we heard from James, longing for his sister (just 15 months younger and now 42 inches tall) to come on the rides with him.  He asked over and over and over again.  "Annie's 42 inches, can she come on this ride with me?"  "Annie's tall enough now, why can't she ride this with me?"  "I can help Annie get on this floaty why can't she come on with me?". Oh God how I wished I could take my prayers back.  I didn't want my content Annie anymore, surely if she was screaming and unhappy James wouldn't have longed to be with her.  But no, I prayed for content and content was what I was given.  Lord help us in what we pray for.  What a lesson.  The night rolled on and we had some amazing times as a family, swimming, playing, having fun.

Kalahari has this amazing restaurant that just honors kids and their need to be the center of attention.  They have a nice big stage and a DJ that runs lots of fun games with prizes and when the games aren't going on the kids get to DANCE on the stage!  Um, can we say "Gracie's  favorite place?"!  This year we got to the restaurant late so we had to sit a little far back and Grace was less than thrilled heading up to the stage "solo" so far from her family at the table.  I decided I would be her tiny cheering section and walked up to the stage with her, squating between 2 tables while she danced to her hearts content.  To my dismay Gracie walked onto the stage very shyly, didn't dance and walked back down to whisper in my ear "do you think Annie could come up and dance with me?"

James and Grace are being hit with the giant water bucket!

 James doing a little rock climbing.

 Scott and Grace!  I love that they are complementary opposites! 

 Scotty zip lining

 Gracie riding Ollie, the camel

 sweet little Lulu, napping

 James and Gracie brining us lunch!  

 Jamesy zip lining

 James with the Rhino!

 Sott and Annie

 James and Grace dancing at our dinner table.  

It's as though my sweet day dreams while Annie was resting calmly in my arms had turned into nightmares  All that I had asked for "Annie to be content and happy" had opened the flood gates of "what could have been".  Don't get me wrong, we had a fabulous time, but I couldn't shake the fact that Annie is getting older and the older she gets the more her sister and brother need her and the less I can take the place of James's "fearless younger sister" or Gracie's "partner in crime".  God how I hate having to let go and allow my kids to experience the pain of Rett Syndrome.  I have to feel it, but I can deal.  Annie has to live it but I can remain stead fast in fighting for her.  James and Grace, God help me, how do I help them walk this walk?  Lord, give these kids a heart to keep loving and believing in their sister.  No matter how long it takes for a cure to be found.

Whats keeping me up at night these days....

Any special parent knows that there is a huge, enormous, never ending list of things that we have to worry about with our very special little ones.  And I'm not talking the everyday, every parent kind of worry like "Will my son go to college?"  "Will my daughter stay away from drugs?"  "Will my kids stay safe while they are out with friends?".  We have worries that are much more immediate like "Is my daughter being educated in school"?  "Will my child ever walk?", and "Dear God will she still be breathing when I wake up in the morning?!".  Many of our kiddos have difficulty sleeping at night, I don't think this is by accident, I believe God did that for the sole purpose of making us parents exhausted enough to shut our brains off and get some sleep at night - if only for a couple of short hours.  Of course there are the rare occasions that our kiddos sleep consistently and with that new found rest our brains are recharged and able to worry again - enough to wake us up out of our precious sleep.

That is exactly what is happening now and the worry that is keeping me up is Annie's bones.  The typical parent might not understand but the special one knows, when a child does not walk or run or jump or play their bones feel it.  We all need weight bearing exercise to keep our bones healthy and that exercise is incredibly difficult with a child who is non-ambulatory.  Of course there are standers and walkers and therapy but there is no way you could even come close to the time a typical child is up and moving no matter how dedicated the parent.



Another piece to the bone puzzle is diet.  Annie should be getting about 1,000 mg. of Calcium per day, it should be pretty easy right?  Well, not so much.  Annie's tolerance to dairy is "iffy" at best.  At one point in time Annie was able to tolerate raw (non-pasteurized) milk which was awesome because in my opinion that is the best way to get calcium - it's surrounded by many other nutrients and is very easily absorbed.  But then she stopped tolerating it.  Of course there are other, less ideal options for "milk" - almond milk, soy milk, rice milk but, I don't agree with anything soy and Annie aspirates on thin liquids.  What about through the tube?  Yep, we do give Annie Hemp milk through her g-tube, but she isn't able to tolerate much bolusing through the tube, its tough on her delicate GI system.  Yogurt has always been intolerable for Annie, feed it to her and she just gags it back up.  Ok then, cheese - yes, she'll eat it, tolerate it, but it's a very special meal if you can get more than about 1/4 of an ounce into her.  I could go on and on about diet and the calcium rich foods - spinach - gives painful gas, almonds - great but she can only crunch, bolus and swallow a few of them - we have tried it all and come up short every time.  Believe me, as a dietitian it KILLS me not to be able to keep this child thriving with just food!

Annie has been on bone supplements since she was about 18 months old.  Thinking back Annie's bones and heart have always been a source of extreme anxiety for me - I have no control over her heart but darn it I was going to make sure her bones stayed strong.  This has proved to be a most difficult task.  Our bone suppelement is wonderful, it includes all of the essential ingredients to build bones - magnesium, boron, calcium, vit. D and K, yada yada.  Of course there is a balancing act to using supplements (especially with children) too little calcium in your diet can lead to bones breaking down to keep serum calcium levels normal but too much calcium can cause all sorts of issues including death.  We make sure to keep the balance at optimal levels, I tend to obsess over the numbers, calculating her night formula, her bone supplement, the hemp milk and whatever calcium rich foods I can I sneak into her during the day.  Another consideration is the type of calcium that is in the supplement is it calcium carbonate, citrate, gluconate, phosphate?  Calcium carbonate can interfere with the pH balance of your stomach (think tums).  And of course we have made sure that our supplement is from a reputable company since all supplements are not followed by the FDA.

Even with all of this careful calculating and supplementing we are still faced with osteopenia.  Annie has recently had a bone scan and we have found that her bones are thin in areas.  The news was quite a slam although not shocking.  We have been doing everything humanly possible, what's going on?  Oh, Rett Syndrome is.  I found this pubmed article that pretty much tells it like it is - girls with Rett Sydrome have low bone mineral content and what's more is that girls with R168X and T158M are at even higher risk for this.  Well, whadaya know, Annie's mutation is R168X.  You would think after reading this I would have thrown in the towel, it's Rett Syndrome, nothing we can do.  Oh no, you see when someone tells you something negative about your special kiddo "she'll never walk" "she'll never talk" "her bones will get worse and fractures will start" it only makes you work, think and challenge all the more.  You special parents know what I mean.  It's just a matter of thinking outside of the box to find something else that may help this bone situation - I'll keep you all posted if I come up with anything and Please, if you have any suggestions leave me a comment!

PS. I concentrated on calcium for simplicity's sake in this post but the truth is that there are many vitamins and minerals that contribute to bone growth, calcium alone will not do it.

Split Personality

Not many people realize this but I have a split personality.  At times I am a wife and mother of 3, other times I am a 6 1/2 year old little girl.  Living a double life is difficult, exhausting and often times just plain overwhelming.  The constant back and forth of each can be confusing to keep up with but it's a life I have been given and must keep up with, my daughter needs me.

There are many people out there like me.   They are easy to spot, they are the moms with a child in a wheelchair at the park that picks them up, struggles to carry them up the ladder and then slides down the slide - because they deserve to play.  It's the mom who is in the grocery store showing their non-verbal child 2 cereal boxes so they can make their own choice for breakfast - because everyone deserves to have a choice.  It's the mom who wasn't able to drop her child off at a birthday party, she had to stay, but smiles as she feeds her daughter cake and helps her daughter to carry a gift to the birthday girl - because she deserves to be included.  The mom who takes her daughter to church and pulls her out of her chair so she can help her dance, then grabs both of her hands so she can clap - because she deserves the right to praise.  It's the mom who invites other children over because her child can't pick up a phone, or dial, or speak - because everyone deserves a friend.  It's the mom who is in the movie theater reaching over to feed her child popcorn because no movie is complete without popcorn along with it.  It's the mom who pulls her child up to her feet at a school assembly because all the other kids are standing.  The mom who translates slurred talk or special looks to others because their child deserves to be heard.  The mom who is helping her child walk, or run, or jump or even sit because she deserves to experience what all the other kids are.  She's the mom that is happily explaining to a group of children why her child wears arm braces or travels in a wheelchair, or has a pacifier or can't speak because her child deserves to be understood and accepted - (even though she really feels like grabbing her child and running, crying and hiding until all of the questions go away.)

Us, "split personalities", aren't on Jerry Springer because we don't lead exciting or flamboyant lives.  we just spend our days putting ourselves in our childrens shoes and trying to think, act and do what our kids aren't able to.  We are the ones that are watching other kids to see what they play with, how they talk, dress, and wear their hair, so we can catch a glimpse of what our own child might like, do, say and look like if they were able to voice their opinions.  It's not easy to lead a double life.  You must keep a smile on your face at all times because there's no telling when you have to change into a 61/2 year old again (and we all know 6 1/2 year olds are always smiling).

Most of the time our evenings leave us exhausted, we change back into a parent and have to administer meds, hook up vents and tube feedings, snuggle, bath, dress, read stories and tuck in.  Then we wait, at this point we aren't sure what we are, caught between the 2 personalities.  At times we can be the mother that checks in on our kiddos, prays over them and heads to work or to sleep.  Other times we need to turn into a 6 1/2 year old girl and play, watch TV, or read until our child can settle to sleep.  When morning comes we wake knowing that we need to fulfill the lives of 2 different people again and that we only have 24 hours to accomplish that.

This post is dedicated to all of my split personality friends, our lives are difficult but are much easier when we lean on eachother.  Keep fighting the good fight my friends, your daughter loves and thanks you for it!

Ps. if you'd like to meet some of my split personality friends just check out the "we don't walk alone" list on the right!
Pps.  I know there are many special families out there that have a male child with special needs, I also know that there are many, many special daddy's out there that lead double lives as well.  I didn't mean to exclude you, I just write about my own experiences.  Kudos and blessings to all of you too!!!