You’re right. It
sounds whiny and selfish. And you’re
right, again. Some days, I am whiny and
selfish. Some days, I am the exact
things that cause my precious 2 year old son to drive me batty. The biggest differences? I can communicate effectively about it. AND, I have opposable thumbs so I can TYPE
about it and put in on the internet.
WINNING.
Parenting is hard.
Preemie parenting is a whole new ball game. That, frankly, I didn’t buy tickets for. They were given to me. Forced upon me MONTHS before I was able to
fathom the responsibilities that came with it.
While I can see them for the irreplaceable and miraculous gift that they
are, there are times I want to say “NO, Thanks!” and give back the tickets to
the crappy seats with the questionable view to the game with too many
overtimes. But then, it’s the seventh inning stretch, everyone is happy and
celebrating a comfortable lead, and I remember, not everyone gets to experience
the game this way. Not every Mom was
trusted with the challenges of premature babies. It’s an elite club. One I am truly blessed to be a member of.
So, why all the baseball non-sense? Because I have had a few of “those” days
lately. And it makes being a Mommy
hard. Life after NICU is not an easy road. I am tired of pushing. Pushing and pulling, coaxing and coddling, to
get my baby to “catch up” to normal 2
year olds. I often wonder WHY? Why does he need to be normal or “within the
range of normal” for a specific development?
We were often told in the NICU by well-meaning staff, and even by other
preemie parents that were on the “outside,” that preemies were strong and resilient and that most of them in Finn’s situation
(without specific medical complications at discharge) will “catch up” by 2
years old. I am so grateful for a friend
who I met for the first time when Finn was about 2 weeks old. He was still in the hospital (of course), but
I had come home to go to a party with some friends. She was there, and she had a son who was 4 at
the time who was a preemie – a surviving twin. She knew our story and who we
were, and not 20 seconds into our very first conversation she told me, “They
don’t all catch up. People will tell you
by age 2 he’ll catch up, but don’t be surprised if he doesn’t.” Honestly, I hated her for that (we’ve talked,
we’re over it – GREAT friends now!). I
hated that she had burst my bubble that I had worked for DAYS to build up just
so I could come home to this party while my baby fought for his life. Way to ruin my evening, Friend. But looking back, I am SO GLAD she was so
brutally honest with me. While Finn is GREAT
and PERFECT and WONDERFUL, he is tiny, and has lung problems, and some hearing
loss, and speech delays, and feeding (texture) issues. And he’s TWO. He is not your average 2 year old.
This was all brought on by the milestones he has reached
recently, and the ways in which he is still behind. Right around his second birthday last month, Finn’s
vocabulary really JUMPED! We were so
excited as 3 words became 10, 10 became 20 and 20 become 50 in a very short period
of time! The “plan” we had written with
our Child Development Specialist (that comes 1-2 times a month to assess Finn,
and has since the day he came home from the NICU), has indicated we wanted him
to have 50 words, so we were THERE!
YAY! Celebrations abound! Until, she says, “OK! Now, when I come next time we have to write a
new plan with new goals.” *sigh* Over the last 2 years, we have done this
several times. Written a plan, met the
goal, written a new plan. He had a plan
to get off the supplemental oxygen. He
had a plan to roll over. To push up, sit
up, stand up; crawl, walk, run; chew, babble, talk… And on and on and on. We’re always working towards the next goal. Always pushing. Always pulling. What if I don’t want to try so hard anymore? It’s tiring.
It’s frustrating. It’s
disappointing when there is no progress.
Finn is still very much the same personality he was in the NICU. He is stubborn. Wants to do things his way and in his own
time. He was often on the brink of
something good happening during his hospital stay (off the oscillator, on to
bottle feed, etc), and he would regress and we would have to wait several days
to get back to that point. He is still
the same way. Reminds me of all the
roller coaster dips and turns we took 2 years ago.
Here we were at 50 words, and we hit a plateau. No new words.
No stringing 2 words together. No
sentences. And, we noticed his eating
habits were getting worse and worse, not better. In his imaginary perfect world, he would like
to survive on PediaSure (but only the vanilla or strawberry; hates banana, and I hate the chocolate because it stains) and Goldfish alone.
And because ANY food or calorie intake is better than none, I am pretty
sure a few days he does just that. But,
that’s not what ne needs to be doing. He
gets 2 bottles of PediaSure a day. (At
an average of $1.67 per can, that’s $3.33
a day, $23.33 a week, $95 a month – his drinking habits cost more than any of
his brother and sister’s lessons or activities). Some days, he gets 3 (cha-ching). Plus, the 2% milk – typically flavored with strawberry
or chocolate just so he will drink it. He
will only eat things that are crunchy (cookies, crackers, chips, cereal). Nothing smooth (aside from an occasional
pudding), slick or slimy. This includes
all fruits and vegetables. His favorite
meat is chicken. And yes, we feed him
beef, pork and shrimp but tell him it’s chicken. It works.
Like 20% of the time. The WIC nurse
was upset with me at our last appointment because he doesn’t eat fruits or
vegetables. I was tired, and I
know. So I said, “OK. YOU
try to feed him and see how it works.” I
know it was rude, but did she honestly think I didn’t know he needs a balanced
diet? HE WON’T EAT! Anyway – I know all the talking and eating issues
are related. He was intubated for 7
weeks. That’s a super long time.  |
| Finn. Early days. Intubated. |
So, here we are. Pushing again. He has decided the Buddy Fruits blended fruit
puree pouches are acceptable again (when he was first introduced to solids we
relied on these heavily, but he started refusing them months ago). But only certain kinds. I can't keep track of what he likes and refuses to even get close to. You should se the fits he throws when he thinks we are trying to "trick" him with real milk instead of his beloved PediaSure. Good times. We are sneaking in veggies where we can, with
limited success. Our “plan” for this next
3 months is to get him to eat a better variety of textures, and to get to 2
word combinations (blue ball, bug truck, my fork).
We talk and talk and talk to him to get him to repeat
us. Even if we’re tired. And don’t want to. And we throw away more food than you can imagine
trying to get him to try just one more thing.
We could feed a third world village on Finn's scraps. There are days when I really just want him to be “normal.” To have a “normal”
day without constantly working with him to make some grandiose stride towards a
goal. So, I let us have those days. Days where I don’t push and I don’t worry and
I don’t force. But then it’s right back
to the pushing. It’s not about me. It’s about Finn. And his future. We have no idea what that will look like, but
as parents of this precious miracle, it’s our job privilege to make sure he is
ready. So we push. Day after day. Month after month. And, it’s totally worth it. Even on my worst days, my most dramatic whiny
and selfish days, he is so very worth it.
