Submitted by kim on Wed, 05/28/2014 - 19:41 in Nathaniel's Story
Nathaniel and Mom waiting for surgery
I walk Nathaniel back to the operating room beside the anesthesiologist chatting about her twins and my eight and the first time I handed a child over to a doctor for surgery. Twenty-four years ago this summer. So many surgeries in between. But a mom never gets used to that moment when the baby or child disappears behind the doors. A lump in the throat. I bite my bottom lip. I walk quickly back to his pre-op room where I can wait in prayer. It does not matter how many times I have done this, my faith is stretched every time.
I have carried Nathaniel for nine months. His feather light hair rests in the nook of my left elbow and he breathes softly through his tracheotomy tube. He sleeps deep in my arms. His body wraps around mine; his right hand resting on my chest, his feet extending to my right hip. We are stomach to stomach and he feels as much a part of me as if I once held him inside. In these quiet intimate moments I think of the woman who carried him in her womb for nine months.
It is slowly occurring to everyone how much of an adjustment we have to life without Grandpa in our home. Grandpa has been away from our home before: a week to visit other family or a weekend church activity. But we always expected his return. One night this week we came to the dinner table and realized our seating arrangement could change. Family meals have always been an important part of our day and with Grandpa's seat empty, we felt a need to squeeze in tighter. We did. Everyone has a new place to sit now. Closer. With no empty spaces.
What happened at the table is happening through out the day. We are drawing together, diminishing the gap, and desiring to connect to one another. Ben, Nathaniel and I spent Monday at Missouri Botanical Gardens doing just that. Walking. Talking. Taking time together in the sunshine. Our conversation jumped from the adjustments we are making as a family to the benefits of Tall Fescue over Zoysia grass. It felt good.
Submitted by kim on Mon, 04/14/2014 - 12:43 in Nathaniel's Story
Someday we will have a cordless baby. But for now, cords are part of Nathaniel's and our lives. This is what Nathaniel looks like attached to his g-tube feeding pump housed in the little backpack.
When out in public, children often approach us, point at the tube, and candidly ask, "What's that?" Their parents are mortified, but equally curious. I've learned that children and men want to see the whole system, right down to the skin. For educational purposes, here it is: an explanation of the Mic-Key™ g-tube feeding system we use for Nathaniel. No needles or blood involved so even the queasy should be ok scrolling through the photos.
I do not take selfies often. And I rarely post them on the internet. Especially if I'm not wearing makeup. But I love the stories this photo tells.
Nathaniel's fat little chin and cheeks tell of his recent weight gain. He is not on the growth chart yet, but is gaining steadily. With every pound, I see him getting stronger. Stronger means he can cough up his lung secretions and battle illnesses. Stronger means new gross motor skills. Stronger means longer periods of play time. Stronger means walks after dinner as a family rather than going straight to bed. Stronger is a criteria for reconstruction surgery. I see all those things in this photo.
Nathaniel's first word was BATH. He said it with his hands a few weeks ago.
It happened like this:
While I have been talking to therapists and reading, Rich has been quietly doing his own thing. Consistently. For months. He undresses Nathaniel, signs "bath," and says, "Let's go take your bath!" One afternoon Rich and I were talking about the bedtime routine and decided we were under a bit of a time crunch and would skip Nathaniel's bath. After dinner Rich took Nathaniel into the nursery like normal and started to undress him. As soon as his shirt was off, Nathaniel signed BATH.
We made time for a bath!
I have been kindling a dislike of speech therapists for months.
If I were perfectly honest I have been kindling a dislike of speech therapists since I was in elementary when I had to sit in a hot little rectangular room with four boys practicing my "s" and "r" sounds.
But my weariness of speech therapists has started to change.
Submitted by kim on Fri, 03/28/2014 - 22:24 in Nathaniel's Story
Nathaniel and Mom enjoying a moment together.
Helping Josiah with math.
Playing guitar with Dad.
Submitted by kim on Tue, 03/18/2014 - 09:42 in Nathaniel's Story
I'm a bit caught. Due to Nathaniel being in the custody of Children's Division for the first six months he was with us, I couldn't share information or photos publicly. The telling of Nathaniel's Story is back in August for the most part. But life today is fun and exciting and I'm eager to share what is happening in Nathaniel's and our family life THIS week.
The easiest solution that I can come up with is to share lots of photos from our fall together. A picture is worth a thousand words, right? Here are some photos of Nathaniel and our family as we settled in the last weeks of August.
Thinking back on yesterday's augmented communication appointment, I must have looked like a crazy mom. I hauled in a large bag of stuff that I had made, his toys, the talker that Nathaniel's speech therapist was trying to use, his iPad, copies of research articles I had found, and my go-everywhere-Nathaniel-binder.