Let it go….

frozen characterHi, it’s been a while since getting a blog written (many started, in the cue and never sent out) so, let’s just say this is a few blog posts rolled into one.  Over the past couple months, our last au pair left, our new au pair arrived (LOVE her!),  Danny went back to work (after 9 months of being a house dad with me – can you say trans-iiii-tion?),  pre and post surgery anticipation for Carson (this will change everything / this has changed nothing) , running and ending a successful fundraiser (AaaaaMAZING experience!), ordered a wheelchair for Carson (really?  noooooo  – yes, we’ve outgrown the stroller), and the most current transition, Carson turning 4 (??!!!).    It’s been a roller-coaster of emotions – some obvious, some hidden – but overall I’d say I’ve / we’ve  handled most of these transitions with a fair amount of grace (“Danny, care to weigh in on this?” ).   Typically my M.O. is getting the job done – start, complete, follow up – just do it!   Believe me, you need this when it’s the 3rd time your calling your insurance company about the SAME thing!.   Then something monumental comes along (like ordering a wheelchair for your baby) and feeeeeeelings come up, hormones do their thing (that’s nothing new) and you (I) feel like I’ve just stepped in quicksand.   Down I go into thick fog and not a lot gets done.    I guess this is what some may call ‘processing time’.   My brain so badly wants to make sense of it all and pull it together …. but sometimes no can do.   So, what I’m trying to convey here is the wild ride of life, childrearing, expectations (unmet), marriage and self care (I’m an avid believer in this, not always as easy to do when you have a FULL plate).

More times than I can count, people ask me how the boys are?   As mentioned already it’s quite a loaded question with a mix of emotion.    Generally, I say their great (because they are truly fantastic kiddos), however there’s much more detail that remains.    I thought I’d spend some time giving some weight to the question …. How are you / the kids/ Danny?

And, so … here it is:

Carson:    As many of you know, Carson and Danny flew to Texas in September for a procedure that we were hopeful would improve sitting, standing, balance and allow better use of his arms and hands.   Those are HUGE expectations to put on ONE procedure but there you have it, hopeful and willing to try almost anything are the name of the game.  Today (2 months later) Carson’s feet actually land FLAT on the floor (yahoo) without his ankles rolling.    This means that he doesn’t have to have his ankle foot orthotics on 24/7.   We used to have to put them on first thing in the morning if we expected him to walk in his walker down to breakfast.   Not anymore :).   His self-feeding has improved with an ability to get the fork to his mouth easier (another big plus).    However, Carson’s balance and ease of sitting independently (on the floor, particularly) continue to be a challenge for him.   We’ve not seen a lot of change in this area, yet.   And, Carsons walking still requires much assistance, however, he scissors less therefore his gait is better.  Those are the details of how Carson’s body and mind are communicating.   Carson knows everything he’s asked to do – without a doubt – it’s just that his body and mind can’t seem to sync up accordingly.  Can you imagine how infuriating this must be … to be trapped in a body that won’t cooperate.    Carson is quite the charmer and at times (a little man-ip-u-lator).    He is a smiley boy (always has been) but just like any good 4 year old he can throw a tantrum when not allowed to do something he loves (NETFLIX).   Cognitively the kid is brilliant ….  we have no idea yet what he’s capable of (Harvard?).   We’re working on getting his communication ‘systems’ in place through using an iPad which he seems to grasp quite easily (it’s his fingers that make it hard for him to use it – again, the body coordination).  To Carson this is  his norm.   To fight and work his *** off to do almost anything except lay on the couch and watch Netflix (his happiest place).   Our next adventure (soon to come) is the possibility of getting Carson a power chair.   Right now is form of independence is turning away (i.e. if he’s mad at one of us) – he doesn’t get to take off and run away or even ‘say’ NO.   At the end all I want for Carson (and Chase) is for them to feel empowered and confident.  If that comes with some equipment, so be it.

Chase:   I’m stumped at what to say about Chase because while he endures challenges with balance, speech and independent walking he is right in the mix with the next kid.  He is determined to engage fully with everything and everyone.   He, like his brother has an extraordinary sense of humor and I believe was born with an extra shot of serotonin.  He is a happy kid 99.9 % of the time.   Chase’s imbalance throws off is ability to walk without assistance (even walking with a walker is a challenge)  because his body is literally moving all the time on it’s own.  He practices mimicking words to the best of his ability as we practice oral motor coordination with him (like I said, he doesn’t give up – always tries whatever you throw his way).  Cognitively Chase is also very bright …    knows what he wants and lets you know it.   One of the best things about being a special needs parent is that there is no victory too small.   A new sound is reason to dance the happy dance.

At the end of this journey – after a zillion therapy appointments, intensives, home programs, specialists, etc…    it does once again come back to acceptance of who Chase (and Carson) are and who they’ll become over the years.   They are both pretty darn amazing (and funny) little boys who bring a smile to all who meet them.   I pray that through the upcoming years of hard work neither of them lose their wits about them.    I hope Danny and I never stop smiling and laughing with them (even though at times it can all feel so disappointing, tiresome and frustrating) – humor is a the great elixir in life.   And, in the end, what will be, will be.

Danny & Nikki:    People often comment on how lucky our boys are to have Danny and I as parents.  I agree.   Not from an arrogant place but I can’t imagine any other two people more committed to giving their best to Carson and Chase.   I don’t think Danny or I could imagine our lives without them ….(just the way they are).    They’ve already grown us exponentially both emotionally and spiritually.   Although, the growth periods can sometimes feel absolutely wretched.   Co-parenting is hard … but when you’re both constantly working toward improving, strengthening, challenging, supporting, lifting …. etc (oh, AND loving)  your kids, things can get a little bristly.    One of the hardest parts of a special needs marriage is all the decisions to make (and working on staying on the same page) plus the daily downloads from the therapists mouth to my ear to my husbands…. it’s a crazy game of telephone (and some days exhausting).   Sometimes it feels like we’re stuck in time as we continue for the zillionth time to help one or both of our sons to complete a task that we were hoping they’d have achieved by now ….  and we both so badly want to do this with grace and kindness.    Try that when you’re hungry, angry, lonely or tired.   🙂    A special needs marriage is beautiful and filled with many remarkable moments.  It’s also filled with a lot of hurt, sadness and disappointment that both of us would love to conceal for our own reasons.     Sometimes we cry together.  Sometimes we cry in our own corners.   It’s always better together!  Our marriage and our journey is one of radical acceptance (of each other and our boys).   We move at different paces, we have different strengths and we have different love languages however, when these things are in mind and we stay aware we make an AMAZING team.    When we’re asleep at the wheel (for whatever reason) we are  like a chain that keeps coming off the bike (sort of annoying).  I guess that’s the lesson over and over …  to stay tuned in to the good stuff (each others great qualities) and LET GO of the rest.   The same can be applied to our boys….   (“look what Carson is doing ….  yeah, but he’s not doing x, y, z yet!”)   Major buzz kill (and positive energy destroyer!).    So much good to be found no matter the circumstances.    Always.

Final words;  Carson’s favorite song is “Let it Go” from the Frozen soundtrack.   When he hears those words as on cue he puts both his hands up in the air – it’s both adorable and freeing to do it with him.    An amazing reminder to truly LET GO!   All of it – the comparison, the disappointment of what things are supposed to look like, the grudge, whatever…  LET IT GO.    I pray for this motto to be the Miller legacy.    Why hold onto things so tightly – who cares in the end?    I think it comes down to true happiness on the inside.

This is what I would say when someone asks how we / the boys are …   I think it’s a little long winded though, so I’ll stick to “great” for now.  🙂