Storms

Last week, as most of you know, we had some devastating storms come through our part of this world. Having lived in Texas most of my life, I am hardly new to tornados and bad weather.  In fact, I have been through a couple of very hairy experiences in my time, all of which very thankfully never resulted in anything more than property damage.  I will admit though that the storms last week were a little too close for comfort, and for the first time in a long, long time I actually got everything ready for us to take cover and pray.

Thankfully, things stayed just far enough away that Chance and I never did have to actually go to our safe space.  The girls were with my mom in East Texas, so at least I was not worrying about them at the time, and Michael was at work where they spent more time than he liked standing in the stair wells.  When all was said and done, we were safe and had no damage.

As the danger passed for us, my attentions turned to our friends & family who were still in the line of fire.  It is in these moments that you sometimes realize that you have far too many people you love in one area, something I realized as I texted each one to make sure they were okay. One by one I was hearing back from these precious people that they were okay and the danger had passed, each time sighing with relief.  But as time passed and I realized some of our family had not responded, my concern grew.

After what seemed like an eternity, some news started to trickle through.  Most importantly, our family was all okay, but the neighborhood where both my Great Aunt & Uncle, and their daughter and her husband live had taken a direct hit and there was devastation. My great aunt & uncle’s house is completely torn apart….but they are okay.  Miraculously!!! My cousin’s house is one of the few still standing, and they were right there to help when it was needed most.  Thankfully the rest of our family in the area escaped the wrath of this devastating tornado.

Please keep our family, and all the others affected by the storms, in your thoughts and prayers as they attempt to rebuild their lives.

Sometimes, life feels a bit like springtime weather in Texas.

You have sunny, beautiful days where all you want to do is revel in the moment, feeling the warmth of the sun on your face and the perfect breezes.  Then, sometimes without much warning, you suddenly see something brewing in the sky and feel the winds shift as a storm starts to blow in.  It might blow over quickly, might just provide some needed rain, could be a gully washer, and sometimes it’s something much more. 

You can see the signs, just cannot know exactly what your in for.

This place, where you see something brewing but just cannot say for sure what it’s going to turn into, is where we have been with Miss Madison (medically) for a little while now.  Like last week, I haven’t wanted to say we were “okay” till the storm had passed, so I have been waiting for some sign from Madison that we have either seen the worst of this, or whether there is more to come.  It’s STILL not clear at this point. She is not in crises, but keeps flirting with the edges of that place far more than I would like to see. 

Last week, I lost a whole afternoon, watching the news and listening for signs that we should take cover.  Likewise, our days the last month have included gathering all kinds of medical information in an attempt to watch for signs of needing to do more to support our girl.  Much like a tornado, where you have just enough information to know that one might form, but cannot know where or when till moments before, we have been watching her like a hawk, looking for the signs that we might be seeing something that we need to take action to avoid.  Like a tornado, her body is sending signals, but we are (thankfully) still waiting to see if there is going to be a touch down and whether it will be a little tornado with no damage, or something bigger and more ominous.

At the same time, there has been a storm brewing regarding the kids care, who we are seeing, and between some of the physicians on our team.  This has not helped the general uneasy feeling I have, however, I truly believe some streamlining is in order and may make a positive difference for us all in the long run.  The stress of it all though has been intense.  I loathe making changes in the kids care team, in part because I have pretty carefully and meticulously built the team to where it is now, but also because it means new doctors and the process it takes to get them to the point where they have a vested interest in my children and our family.  It’s never easy, always takes time, and doesn’t always work the way we would like for it to.  The reality is though, while what we have in place has worked for us thus far, there are gaps that we have no choice but to get filled at this point.

In the midst of all of this, there HAVE been many sunny days (or at least moments), literally and figuratively, and for those I am so very grateful.  We are attempting to adjust to this new normal in some way, and with that is coming all kinds of changes.  In general, changes can be good, but they almost always come with some trepidation as I move out of my comfort zone.

Thank you all for the continued prayers…..please keep them coming!!!

*Courage*

Courage

Noun:            1. The ability to do something that frightens one.

                      2. Strength in the face of pain or grief.

A few weeks ago Madison had an appointment with Hematology at Children’s to discuss options for treating her anemia, and while the appointment was a bit of a bust, one aspect of our morning there was very good.

As we sat in the small room doing Madison’s vitals she noticed a poster on the wall and was intently studying it, trying to figure out what it was about.  Before I even realized what was happening, the nurse asked her if she was a part of the “Beads of Courage” program and upon realizing that Madi wasn’t, she insisted we needed to get her “hooked up”.  We left the little room with what I think is going to be the start of something pretty awesome.

I had heard of the program, and thought it sounded neat, but didn’t fully grasp what it was about or, more importantly, the impact it might have on my children and I. 

It is sometimes the simplest of things that make me stop and think….really think.

From www.beadsofcourage.org:

Every bead tells a story of strength, honor and hope.

What is the Beads of Courage Program?

The Program is a resilience-based intervention designed to support and strengthen children and families coping with serious illness. Through the program children tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path.

Telling the story…..tangibly!!  This, in and of itself, is an amazing concept, no matter the age of the child.  We talk about “owning” what our lives are around here all the time, as in that the kids have to own their treatment plans for them to work….they have to “buy in” if its going to have a chance to be successful….and while this was easier in some ways when they were little and much less involved, it is at the same time easier now that they can play such an active role.  This concept extends to all areas of our lives, but the truth is, “owning” something is easier when there is something tangible to attach it to.  So this part of the concept of Beads of Courage (BOC) feels really good to me.

The bigger revelation though, for me, was the idea of honoring, piece by piece, the kids strength, honor and hope.  RECOGNIZING all the things they do and get through, and not taking for granted that they will, or just should.

I am SO guilty of this….

After hundreds of blood draws, I expect them to just deal….It’s “just” a blood draw after all.  After so many doctor appointments, I expect them to handle what’s being talked about (with as much forewarning as I can give them) and “keep it together”.  After so many times being put under, going through a procedure, having their g-tube changed, etc., I just expect them to get through it unscathed. 

I realize that, in part, this is how I cope with putting them through it all.  Allowing myself to recognize how these things truly could affect them was too heart breaking and other than telling them I am proud of all they get through, there isn’t much more I can offer.  When they were little I could “reward” them for getting through some of these things, and in those early days, a Beanie Baby from the hospital gift shop was the ticket.  As they got older and endured even more, the “little” things like getting through an appointment with good behavior was no longer something I acknowledged, just expected. It needed to be something more, like a blood draw or anesthesia for them to be tangibly rewarded.  At some point, even those things were so commonplace that they were no longer considered significant, and besides, as the kids got older, the things that once gave them a goal to work towards (getting something), no longer held much worth to them either.  Oh sure, the promise of cash helped some, but the reality is/was, rewarding them had lost its charm and really wasn’t needed anymore.  They were giving their best just because, and I have grown to expect that.

I love that the idea behind this program is not to “reward” them doing something the way we want them to, but to ACKNOWLEDGE that they got through something….that they were courageous in facing their challenges that day, that they are strong each and every time they are enduring these things, and that we HONOR that courage and quit taking it for granted.

For me, it goes even further in allowing me to RECOGNIZE that courage. That its tangible, something we can put our hands on and see, that those in their care can SEE their story, and that they have the chance to tell their story fully, well….I think it has amazing potential.

The simple concept behind this program has changed me.

It has made me realize that I wish I could go back on some things and handle them differently….and not in a guilt inducing way, but rather, in a way that instills in me the desire to remember and make different choices next time.

I wish I could go back and deal with Madison giving herself a shot weekly differently.  It HAD to happen, and while it broke my heart to see her scared and upset about it, especially after handling it for so long without a peep, I wish I had stopped and acknowledged more how courageous she was to get through it each and every time.  I won’t ever take her composure for granted again, and I will acknowledge her bravery in the face of something like this.

I wish I could go back and handle Abby’s emotions in the midst of doctors appointments differently.  The good news is, I did this last week when we had a GI appointment.  Instead of asking her to “keep it together” till after the appointment and then we could discuss it, I shared with her that we all want her to express how she is feeling about potential treatments and that her emotions are legitimate, but the calmer she could be while talking to the doctor, the more her feelings could be expressed and considered.  She was AMAZING in that appointment…her precious voice cracked as she started talking, but she took a deep breath and finished strong, and the doctor listened!!  She will always be the one wearing her emotions on her sleeve, but she will also be an incredible advocate for herself when this is all said and done.

I don’t want to hang on to the things they have to get through daily, but I DO want to meaningfully acknowledge their courage in the face of the exceptional life we lead, and I think we have found a way to do that with this program…..and I am grateful!!!

A little more about the program….while it started as an oncology program, it has now grown to include several different diseases, as well as most recently, Chronic Disease, which is where we fall for the purposes of the program.  And while it is hosted by only a couple of handfuls of hospitals in the country, they have created a “Distance program” for those that are not affiliated with, or don’t fall under the auspices of their program locally.  While all of the hospitals we have affiliations with are involved, we haven’t had the chance to be included just because we didn’t quite fall into their criteria, so the distance program is ideal.

Finally, YOU have a chance to be involved…..

If you’re a family dealing with illness, I encourage you to look into the program.  I am seeing the impact it’s having on my “big” kids, and have seen others with smaller children that really get something out of this also.  Even if you choose not to participate, I hope sharing my story will help others take the time to acknowledge ALL these kids face daily, and not take their amazing courage for granted.

If you’re an artist, there is a role for you also, making beads for these amazing children.  There is more information at the website if your interested in participating in this way.

If you would just like to contribute monetarily to the program, that option exists also.

And finally, even if all you do is share this with a few people, there are families out there that could be so incredibly blessed to know the program exists.

Thanks for letting me share my excitement over this perspective changing program!!!

I promise an update soon.  Things are busy and kind of crazy here, as usual.  As I prepare for us to see our local Epileptologist we haven’t seen for a year, I suspect what all has changed will become even clearer to me, and this may not be pretty.  We are okay though….getting through each day and living by the mantra of taking things one day at a time and making it the best it can be.

Pomegranate Jelly

I have been a part of Michael’s family now for 26 years, and for as long as I can remember, every Christmas, Mammaw (Michael’s grandmother) has given him a jar of her homemade Pomegranate jelly.  It’s something we have both looked forward to, something we savor, and something we eek out through the year to try and make it last till the next batch.  We never, ever make it much past June.

Long before the pomegranate rage, we appreciated them and this amazing jelly made so lovingly by his grandmother.  Long before you could buy ANYTHING made with pomegranates, we were savoring the flavor, not even knowing it might be good for us in some way.  We were into pomegranates, before pomegranates were cool!!

I just placed the very last jar of pomegranate jelly that will be made by Mammaw, from her pomegranate trees in her back yard, in my refrigerator…..and it makes me sad, and melancholy, and just generally blah.

I won’t share Mammaw’s age because, well, she doesn’t (at least not willingly)…I will only say that she has been “39 and holding” for more than 50 years now.  She is exactly who I hope to be as I age….active, involved, engaged and, simply put, full of life. She is the epitome of growing old gracefully and I can only hope to do it half as well as she has.

Mammaw fell and broke her hip this past July.

She has recovered amazingly well…..no doubt because of all that graceful living she has been doing for so long…..but in the end, the fall has brought with it all kinds of changes, one of which is that she is now living locally in an assisted living apartment.  This means, at some point in the near future, her house will be on the market and there won’t be pomegranate trees to pick from and make jelly. 

This house has been theirs since Michael’s mom was a child at least, so saying good bye to this house is so much more than saying good bye to pomegranate trees (after all, it’s not like they are the only pomegranate trees out there!!), but in some ways, that yard Mammaw so lovingly tended for so many years, those trees that she took the fruit from every year, these are the areas that I personally will miss the most, the ones I grieve for as we move towards getting the house ready to sell.

I have already asked her to show me how to make the jelly, and I will find some trees somewhere to get the fruit from, but that little jar of jelly, so lovingly made by her, will never be the same being made by me.

Truth is, when all is said and done, we have one last jar to savor, Mammaw is here closer and we will get to see her much more, and she IS making amazing strides to getting back to where she was before…..all of which is way more important than a jar of jelly and some pomegranate trees.  Counting the blessings!!!

Sorry for being so MIA……updates to come…..working on getting back into a groove and getting out of the funk I seem to be in right now!!  It’s a new year and I just need to get psyched for new adventures and the promise a new year holds!!!!!