This
week has been hard. Really. Really. Hard. Last Wednesday morning, our
little community lost sweet Annie. Not much in this world is more
devastating than losing a child. I have to say that our "moms' group"
has banded together in ways that I am so proud of and admire so deeply.
And though in some cases, the (now) 22,000+ people that follow Annie's
page on Facebook acted rashly or offensively, I am ultimately proud of
that too. The Down Syndrome community is one of warriors and fierce
advocates who have the power of technology to help in uniting the force
against any injustice that might plague our little ones.
Annie's
service was beautiful. We wore red flower bracelets in her honor, had
our kids there to support us all, and released balloons that reminded us
all that just because Annie can no longer be seen doesn't mean she
isn't with us. Her two older sisters were more courageous than I could
even comprehend.
For
now, I find myself imagining Annie with her angel wings, in a pink
dress, giggling and dancing in Heaven, free from suffering and pain. I
know it is unimaginably hard for her family to wake up each morning
without her, and how much hurt and anger they must feel. I am so
thankful to them for bringing Annie into all of our lives-- she was a
brave, strong little girl that deserved many more painless days than she
was given, but taught us to smile through it whenever possible, all the
same.
We love and miss you, Annie Golden Heart.
The contacts have been in use for about 2 weeks! We have had a hard time with them, as we somewhat expected. But the benefits far outweigh the drawbacks...though you may have to remind us of that on tough nights! We tried soft contacts, with no luck, and switched to hard contacts. The benefit to these is that we can leave them in longer, they provide a little bit more focus for Parker, and they are slightly easier to take in and out.
We VERY quickly realized that it is just about impossible (unless you have about 6-8 hands) to do anything near Parker's eyes while he is awake. Thankfully, we are able to do just about everything we need to while Parker is asleep. We also discovered that it is REALLY hard to take out someone else's contacts, so we use a mini plunger, one that you might expect to find in a doll house, to take the contacts out.
The scary times are when the contacts get stuck-- the right one doesn't have a perfect fit, and easily becomes dislodged and stuck in the corner of Parker's eye, and knowing that since he only cooperates while sleeping, if there were ever an emergency, we would be left helpless without outside help.
But the benefit....Parker can see! In less than two weeks of consistent use, Parker has learned how to put things in and take them out of a bucket, play mini-basketball, and launch for people who are across the room! It is so incredible to watch him develop so rapidly, though it is very difficult to manage the emotions that come from "what if..." questions, like "what if we had gotten these 6 months ago?" I suspect that will be a recurring theme that I will need to work on!
Basketball:
This Spring has been crazy and shows no signs of letting up for summer. Parker is getting big so fast, I just want to freeze time before it all goes flying by. We are so very much enjoying the warm weather-- though it is about to leave us again for a few days. We are excited for the summer when the threat of being cold is out of our minds for a while.
This school year has been especially hard in terms of balancing family and work responsibilities. I have found myself struggling with being great at either one, which is a hard pill to swallow for me. For some reason, I have been under the impression that as Parker gets older, his appointments and checkups will decrease, and that has just not been the case for us. While I love being in Chicago, which sometimes feels like the expert doctor hub of the region, we have found that the doctors around her often travel from hospital to hospital around the area, and are therefore only at hospitals near enough to Parker's daycare once or twice every few weeks. This ends up meaning a new appointment on a new day every time we have a checkup-- even if the appointments are at the same location. Matt is having a hard time with this with his new job, and I have maxed out on my sick time at work-- unfortunately, my job does not allow me to leave an hour early one day and stay an hour later the next.
We have accepted the fact that we still have ugly curtains up in the living room that were here when we moved in, have weeds overgrowing our back flower beds, and have the long lawn of shame in the neighborhood. We try to keep up appearances, go out with friends/family, work out (ha!), etc., but sometimes just fail at doing what we "should" be doing. There are some nights when the anxiety of not doing enough for Parker is suffocating--- the "I should have..." or "I need to..." thoughts are so overwhelming. We are trying the best we can to keep up, but some days just result in lazy couch evenings, or on tough days, some tears and a good book to escape a bit. Parker is such a good model for us-- he is so resilient, even when the appointments we go to cause him discomfort or pain.
At this point, we are trying to determine what we can take off our own plates to keep life manageable. Do we hire a lawn service? Do we try a cleaning service? Who knows.
It is also no secret that I have always been looking forward to becoming a mother, and get a strong baby fever, which set in a few months ago. After the past few months of strain and appointments, we have decided to hold off another year on baby #2, as much as it hurts and is scary genetically to wait. We feel like emotionally, we are barely getting by, and have some work to do to re-prioritize our lives to remove some of the stressors.
Needless to day, I can't wait for my 5.5 weeks off this summer (I agreed to work 4 weeks of summer!).
