Wednesday, July 30, 2014

Summer travels

Let me start by saying I am so proud of my little travelers!  We've now taken 2 "vacations" with them and both have done wonderful.  (I use the term vacation loosely as I end up doing the exact same thing each day where ever we are.  And "vacation" has added stressors of them not being in their own room or being able to run around like usual.)

We kicked off the end of their birthday week and 4th of July with a trip to the mountains with the Savant side of the family.  It was so fun to watch Andrew relive his childhood trips with his boys.  And I know it will only get better as Warren & Dean are able to go on the hikes, eat the Kilwins ice cream, pick out their candy from the Mast General Store, etc.  We tried to do as much as we could with them (though no hikes or ice cream this year!)  But we did enjoy a nice picnic in Blowing Rock, playing in the creak at Price Lake park, and even suckers from the Candy Barrel.  I have some sweet-tooth boys to deal with in the future!

 Loving the creek!

Daredevil Dean isn't as sure about this cold water...

This past weekend, we flew (germs, germs everywhere!) to Kansas City to visit the Ferguson side of the family and for Ashley's wedding.  My grandparents and extended family were finally able to meet Warren & Dean for the first time!  They did phenomenal on the flight there.  I kept waiting for the meltdown that never came.  Such big boys!  No problems with air pressure or being cooped up that long.  We landed and they were able to get some energy out at the pool and running down the hallways of the hotel (sorry other guests...)  They actually attended 90% of the wedding and made it through with the help of a large quantity of puffs :)  That's healthy...  And then we went to the reception and, as expected, they were done.  It was 7:30 our time, past their bedtime, and they were done cooperating.  So, we put them down in a room right off the ballroom, where they actually slept fairly well while Andrew mostly sat outside the room to make sure no one stole them.  And during that time, I was able to create this memory...possibly my favorite of the trip.  Grandma getting down!  

I have no idea what dance move we are all doing here, but Erin apparently thought it was hilarious.  I am bummed I didn't get a dance in with my boys, but know that was absolutely what they needed.  Who knows when they'll be going to a wedding again, but I'll sure be getting a dance at that one!

All these family trips are great, and I am so thankful my boys did well with all the transitions and being out of their little bubble.  But each family outing, each trip we take, there is a little ache.  A sense that our whole family isn't there.  I wonder how long I will feel that.  How long I will be jealous of families with their little girls.  How long will it be before I can make it through a father/daughter dance without having to find an excuse to step out so I can sob on Andrew's shoulder.  This was my second wedding since Reagan passed, and I still feel my heart shattering at the realization that Reagan will never experience that.  I'll never see her dressed up in a wedding gown (maybe even wearing my own), hair all done and makeup on, so eager and excited to be married.  Though I am daily grateful she didn't have to experience the pain in this world, I am saddened by the thought she never got to experience the joys of this world either.  I know our present joys are NOTHING compared with eternity with our Savior, I know she is not longing for those moments.  But my merely mortal mind cannot comprehend what is going to be, all I have is what is around me at the moment.  And in that moment, it was heartbreak all over again.  I know if I had lost a son I would still have these moments, they would just be different triggers.  Anyway, apparently it takes more than 2 years.  Maybe it takes a lifetime.

Tuesday, July 22, 2014

Some things that sting

As a women who has endured infertility, loss, and sick infants, there are a handful of things that people say without a care in the world that really get to me.  Today, it's been both of these, right around the same time.  So I'm choosing to vent while my children sleep peacefully and their baby food is simmering.

#1. "We're going to start a family" or "our firstborn made us a family."  I used to say that all the time, we tried to start a family.  But, as time went on, I realized that Andrew and I were very much family already.  We loved each other, were committed to each other, traveled together, shared our hopes and dreams, and shared a name.  I'm not sure how having a child would make us more of a family.  But to those of us who can't conceive, who wait years for that child, it makes us feel as though something is inherently wrong with us.  Trust me, the guilt is already there on a regular basis, questioning everything, and this phrase only adds to the pain.  Particularly for those women (and men) who are suffering silently.

#2. We don't care what gender as long as it's healthy.  Heard this one while watching the Bachelorette (oh my goodness, I can't believe I just admitted to watching that's my guilty pleasure. And embarrassing...)  It's the first time I've heard that since the boys were born, but I used to hear it all the time when pregnant and never thought anything of it.  Who knows, I may have said it once in my life.  Of course we all want our children to be healthy.  No one wishes for a sick child.  No one wants to see their children struggle to breath, surrounded by a team of doctors and nurses, hooked up to machines, faces obscured by tubes.  Of course not.  But again, this statement stings to those of us who have had babies who are not "healthy."  I wouldn't change a second of Reagan's existence, however short it was, and this just casts her aside.  I cherish those early months in the NICU, extra time I got to spend with my boys, time so many women never get, celebrating countless milestones most take for granted.  Our journey has not been easy, but I wouldn't trade what we have and where we are today for "healthy."  Do I wish Warren & Dean didn't have their medical issues? Absolutely.  Would I like to be able to take them in public during the fall, winter, or early spring?  You bet (especially this year as they are "big boys" now!) Would I like to hold Reagan in my arms every day, watch her laugh and play?  Of course.  But God has used each of these difficulties, these "unhealthy" children, in my life, in Andrew's life, in others' lives.

I know nobody means any harm when these statements are said.  I know nothing was directed at me personally.  I'm sure I offended women at one time with these very statements.  So I'm just putting it out there for those who are tempted to "start a family" with their "healthy" child.  It's picture perfect, but when it doesn't work out like we dream, the statements dig just a bit.

Monday, July 14, 2014


So, 3 weeks ago we had our second set of evaluations for the boys: Occupational Therapy.  She asked ridiculous questions, like does your child help with dressing?  Ha!  Dean does the exact opposite of helping with dressing.  He rolls and wiggles and throws his head back, screaming hysterically.  "No!!  Don't put that shirt on me Mommy!" Like I am torturing him.  It's even worse when, God forbid, someone else attempts to dress him.  My simple response: No.  They do not assist with dressing.  I was unaware at 1 year old that this was expected.  Apparently it is.  And once again, we were diagnosed with developmental delay.  (For far more than just the dressing issues).  How do parents keep track?  How do people who have no therapy background know that, at 12 months, a child should pick up a small object using a pincer grasp?  I feel like I am struggling to keep track of the milestones when I had several classes and an internship in dealing with the physical side of those.

This time, Dean was a little more delayed than Warren.  But both qualified for occupational therapy, falling well below the normal range for their ages, even when we subtract 3 months for their prematurity.  Sigh.  When I look at them, I just don't see all these delays.  I tell everyone how great they are doing, how they are advancing and growing.  Only to be told they are not.  It's incredibly frustrating.  Yet, at the same time, I am so grateful we receive all these services in our home, on our schedule, with some great women who (so far at least) have been incredibly accommodating as I deal with the boys schedules.  Our first session is this week.  If we schedule as recommended, that brings our weekly therapy visits to 4.  Add in the near monthly weight checks, soon to be monthly synergist shots, hearing and eye tests every 3 months, etc. and my new life will apparently be attending doctor appointments.  I now understand a little better how overwhelmed my patients must have felt when I recommended PT 3x/week!  But I am ready to help Warren and Dean catch up to where they should be, as we only have 11 more months where the excuse "but they were 3 months early" can be used...craziness!