New Construction: the narrative

I’ve mentioned that we are doing construction on our house. So far this project has gone as most projects go: one step forward, three steps back. We were hoping to get our house on the market the first week of May… tonight, my husband has texted me multiple times with reports like this:

“the new shower started leaking… we tightened it three times and it still isn’t working”

“the new paint doesn’t match and my dad has to redo the whole paint job…”

“the back door still has a gap in the top…”

I get these texts in the midst of trying to put our two year old to bed. Bedtime with lucy has always been a bit of a masterpiece. She needs structure, but flexibility in just the right places, which I often mix up and pray for God to fill all the gaps. It’s been especially trying since I’ve returned from Boston this trip. I have made special effort to rebuild the trust in our relationship…. she likes to push the envelope. Today was a lot of discipline and praying together, I didn’t know what else to do. We went into the pool together though – just her and I – it was like the movies the way she smiled and leaned her head back in the water with utter trust and no cares in the world as we spun in the cool sparkling water. We danced in the outside shower and raced to get our pj’s on. 

Once safe inside I heard my second born crying out for me. I don’t know how moms of multiple children do it. It’s such a balancing act to meet all the needs… but oh! what a joy! I know I can’t meet them all… but I’ll try my darndest! thats for sure…

He smiles instantly when he sees me. A true momma’s boy and I couldn’t be happier. 

We had a little more success with eating tonight… a true challenge since he has mastered dodging the spoon. He put his whole hand in the cereal bowl!  I knew it was dangerous putting the bowl in front of him, but the OT in me has to allow for exploration 🙂

His new hands and feet are amazing. 

Back in Boston we had such a sweet trip with my mom who was able to go for the big reveal. 

It was quite exciting when we found out that the skull surgery was going to be postponed due to him having bronchitis… I was on the phone non stop with doctors and nurses and schedulers and the like changing our plans three or four times. It wasn’t until 4:00 last week that it was official we were going to Boston to have his casts and pins removed the following day. 

We packed in a hurry and I can’t tell you how grateful I am that my mom is flexible and so helpful just the way I need it. It’s like she knows me better than anyone 😉 she can put up with my sass and say things straight when I need it.. or be my listening ear to any thought I might have. 

The anesthesia team listened to Jack and the head lady said that if the procedure was elective they would say no, but since it wasn’t they were going to give the lightest amount of anesthesia they could. 

The first time I saw his hands I was overwhelmed. I was so happy for him. I couldn’t believe how the doctors fashioned thumbs where there were none! They were chubby and adorable and someday they will become functional and as soon as he reached up to touch my hair I knew my baby boy was back! The surgeon beamed across the table as he reported that the skin grafts had taken well and he had no further complications with his breathing. His feet will need more work he said… I’m only a little sure what that exactly means. His arch is going the wrong way, so instead of arched up they are more like a “u” or something like that. Another bridge for another day.

I was prepared for his hands to terrify me for some reason. I thought they would be raw or bloody or something I couldn’t look at… too deformed? 

they weren’t 🙂  

they were little. A baby’s hands. 

Last night Seth, Jack, and Lucy sat on our big bed and were counting all their fingers. I listened happily to the dialogue.

Seth was speaking, “Lucy, how many fingers do you have? 1,2,3,4,5…”

Lucy points to Jack’s hands

“Yes Lucy, Jack only has three… 1,2,3”

He said it with so much love in his voice my eyes instantly teared up though he didn’t know it. We are so blessed to watch this little miracle blossom before our eyes. Most people get to count their babies fingers the moment they lay eyes on them… We had to wait almost 10 months to count any. 

The rest of the trip was full of adventure. 

We stayed in a wonderful little suburb south of the city in a basement apartment of the sweetest family. They welcomed us into their home and their hearts instantly and we felt very loved and cared for by them. 

We experienced the trolley, the “T”, the science museum, crazy traffic in a cab, the faneuil hall, quincy market, and beet/rasperry tea. We drank a lot of starbucks to keep us on track during the madness as we shopped in the rain, my mom in her poncho… 🙂

One surprise was that the neurosurgeon requested an ultrasound of Jack’s head. Although it isn’t a perfect comparison to the CT scan we had done in April, it would tell us vital information we needed to determine if Jack’s hydrocephalus was aggressive or stable. It showed that the fluid had not grown substantially in the two months time which made the surgeon feel confident we could wait the extra weeks for his lungs to heal rather than do two risky procedures. We did learn, however, that on the scale of mild to severe, Jack’s scans show severe hydrocephalus, though not critical at this point. They still will not place a shunt until absolutely certain that he needs it. A shunt is a permanent piece of equipment that can hold a separate host of problems we would like to avoid if possible… 

I was talking with my sister a few weeks ago and she commented that it’s like I’m running a marathon with Jack. I was instantly brought back to the meeting with the geneticist in the NICU those 9+ months ago. As soon as I heard the word “syndrome” I knew it was going to be a marathon race and not a sprint. Kids with syndromes don’t just require a surgery and it’s done. They are puzzle pieces that you carefully put together. 

Apert syndrome is especially strange to me how these kids can be so “normal” and so “fragile” within minutes of each other. Such a true picture of humanity isn’t it?

Jack and Lucy aren’t really that different. They are just undergoing different kinds of construction. 

I have lots of pictures from our trip I’ll try to upload tomorrow 🙂

until then…



Published by: shanninvanderark

A stay at home mom/Occupational Therapist who has two children, one recently diagnosed with Apert Syndrome, a new coffee roasting business, and a whole lotta stories to share on the journey

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