The Things We Don't Say

Emotions in our house are high pretty much all the time, but I think mine are starting to push everyone else over the edge.

Kids are smart, they know when things are bothering their parents.  The trouble is, they tend to add to it because they don't know how to handle all the tension bubbling beneath the surface.  I try to be transparent with them, but I can't be a blubbering mess every time I want to cry.  Honestly... I've probably worn out most of my "Big Girl Panties" if you know what I'm saying.

I try really hard not to throw pity parties for myself.  I try to keep my frustrations and disappointments to myself or the people closest to me.  There are so many things that we don't say, and I don't think we are an exception to other families like ours.  If I'm feeling the pressure, I know other families are as well.

Did you know that there is a nursing shortage in our area?  Did you know that Lennon and other children like him need in home nursing care, have hours allocated to them, and still don't have a nurse assigned?  Do you know how HARD it is to accept the fact that your kid needs that kind of care in the first place?  Do you know how HARD it is to have your caregiver change?  (If not, check out my previous blog post.)

It is hard to make your "other kids" feel important when they have a sibling who needs care like Lennon.  It breaks my heart to refer to them as the other kids too.  There shouldn't be a separation between them.  I will never forget hearing "You love Lennon more than us."  It wasn't even said in a mean or hurt way... it was just the way that the boys understood life to be.  Even when I explained that we don't love Lennon more, he just needs more care, I don't think that mended what was broken.

I can't tell you how many times we have skipped something for the big kids because of the baby.  Nursing and attendant care are supposed to help with that, but even if we had someone in place, there's still the emotional struggle of leaving Lennon to miss out on what his siblings are doing.  This goes so much against my idea of what family is.  We are supposed to build our lives together. 

I can't tell you how many times we've said no to the big kids when they wanted to join an activity.  Sometimes it is because of finances.  (Lost wages are tough to overcome.)  Usually it is because of logistics.  Dad and I can't commit to getting them to and from practices or events given Lennon's daily care schedule, much less if one of us is in Wichita for a 5-10 day stay.

Lennon pretty much operates on a 3 hour schedule: 1 hour hooked up to his feeding tube and then 2 hours free for play, therapy, or snuggles.  He eats every 3 hours to help him compensate for his body's reduced ability to produce energy.  His amino acids, supplements, and anticonvulsants are given at every other feeding throughout the day.  We carry his emergency protocol and a diastat syringe with us at all times. (Diastat is like an epi-pen for seizures, only it's rectal gel... TMI... you're welcome.)  For longer outings we need formula, feeding pump, extra enteral feeding bag, extra mic-key kit, bottled water, medications, syringes, and pill crusher/splitter in addition to the normal diaper bag contents that "normal" kids need.  And we pretty much have to have the stroller everywhere because he is getting so big and can't sit in high-chairs, shopping carts, etc.

I feel guilty for even writing this... but these are just a few of the things we don't say.

I think families have enough moments where they feel like they are alone in their struggles.  I think there are probably many of you reading now that wish someone just understood what you're facing too.  Be kind, be compassionate, be patient... do what the feel-good memes on the internet tell you to do.  It will make a difference.

My last thought for the day:

When someone finally gets the courage to ask for help, give what you can, and don't be afraid to let them know that you don't know how to make a difference.  Chances are that they don't know what they need either.  Being an friend is usually enough.