Lanier Landing: Happy Birthday, Oliver!

So thankful for this day! Such a happy time for our little family.

The years teach much which the days never knew

-Emerson

We’re so thankful to celebrate 4 years with our sweet Oliver! These are some photos from his little birthday party we had a Chick-fil-A last night. Oliver had a blast! He even French kissed the cow J. He was especially excited about the cake, which was not only super cute, but also delicious (thanks Heather Sutton!). The three things I prayed wouldn’t happen, did not…and I can’t really express to you how thankful I am: 1. No seizure during the party (check) 2. No biting of friends in the innards of the play-place (check) 3. No blow out diaper, which has happened 99% of the time Oliver enters the play area (check). As far as I am concerned, this party was a runaway success! I am not sure Oliver knew the party was for him, but he lived in the moment and squealed with delight numerous times. We’re thankful that our little friends (all that attended were typically developing) love and care for Oliver, it is so beautiful to watch!

I also wanted to update on the IEP meeting. In general, it was a success. We had a huge table full of people discussing Oliver for close to three hours (I had to end it due to a lunch meeting!) These things are intense, and the amount of information that needs to be covered is significant. One of the main goals was to make sure Oliver was receiving adequate playground supervision. His IEP currently reads “close supervision” while on the playground. We want to add that he wears his helmet the entire time he is outside (except when in adaptive swing) and is “within arm’s reach of a staff member” which is where the school representative said he would have to get back to us. We expected this, but are anxious to get an answer. Oliver also can ride the bus, so we are exploring who the aid would be that would ride with him and how long of a travel time he will have to our house. This is a new consideration for us, and one we are just starting to consider…

Oliver’s seizures continue to hover around 2-4 a day.

For Christmas, we’ll open a few gifts and spend time with family. Oliver does not really know to expect Santa to come, or look forward to baking cookies, gifts, etc… All of this is super-painful for me. I really, really love all the magical parts of all holidays. Not being able to put out reindeer food and talk to Oliver about baby Jesus hurts my heart. I had so looked forward to this part of parenthood. I share this because the counselor I see on a somewhat regular basis and I had a breakthrough last week. I’ve been angry the last half of this year, partly because the VNS got infected and other issues that I couldn’t quite put my finger on. Through Snowy’s help, I realized that I’m not angry that Oliver has a rare genetic disorder, or that he has seizures, or that our life is more complex than most; I am angry at what I am missing. The absence of so many things is what hurts, and I think is the root of some of my anger. All the “We can’t do that” stuff hits me virtually everyday. So Snowy suggested I create a grieving journal and write down about all these little daggers. She feels that my deepest need is to get real with God about the pain I’ve been feeling. As the years go it gets harder, not easier. There is typically so much more a 4 year old can do than a 19 month old (the age when Oliver had his first seizure), and his progress has been so painfully slow. I have often kept going by “focusing on the positive”, saying to myself “At least I am not in a concentration camp.” I have made myself think these things are trite. For some they may be. For me they are painful, and perhaps Snowy is right that these tiny deaths need a place to be buried.