It’s hard to pick up and write for this space. I want so badly to present a complete lesson learned, a conclusive package for my readers. But we are still so very much “in it”, that it’s best to just keep on, like a freight train, and allow you guys to jump into the craziness that is our journey at your leisure.
The past couple of months have held great things with Havy girl’s FIRST birthday (Haven and Havester also acceptable). One sure is fun isn’t it? She’s repeating words, using sign language, being rebellious (Weird, we didn’t have to teach her that), and almost walking. She’s overall very entertaining and I think I’ll have more. Although, she does eat A LOT…
The girls, my mom and I returned from a 12 day hospital trip in April. Oof. That stunk. But Jane is now successfully on a new diet that started out rocky but is shaping up to her benefit.
We celebrated my birthday and Rich and I had our first overnight (at home) away from our girls since before Haven was born. I sure do love that man.
We seemed to really be rocking this thing for a while to be honest. Getting to a comfortable place and feeling all balanced. Funny how that feeling never lasts long.
Tuesday came and I dropped Jane off at school. Her teacher greeted me as always. We both started remarking on Jane’s umbrella stroller, it’s size, it’s function. Jane’s size, Jane’s needs. Which led to the question, “Have you considered getting Jane a new stroller?”
“New stroller?”, I thought.
“”Oh yeah, totally!” I said.
“Something a little more supportive, something that she can grow into. More or less, it’s essentially a wheelchair.”
Mrs. Teacher has had this conversation before I’m sure. She knows that you lead the conversation with the word “stroller”. You say “wheelchair” later. She did it right, but it still stung every organ in my body.
“Oh yeah, totally!” I replied.
Where is a rock I can go cry under for 3 hrs.
She graciously showed me some examples of what Jane could potentially use. I nodded and smiled and thanked her and took my youngest and myself back to our minivan. I shut the door and wept.
I texted Rich. I didn’t want to wait. I wanted him to hear what I heard, as soon as I heard it. I wanted him to process in the same time frame that I was processing. I texted a few friends. I was on my way to a play date of several people and needed to not sit in sorrow alone. I needed it to come OUT before I showed up to a house full of kids who are definitely not in wheelchairs. (I still ended up crying when I got there. Didn’t want to leave them out of my emotional crisis, after all).
I told my husband and my dear friend that the thought of wheelchair shopping was suffocating. Debilitating. I have managed to do a LOT with Jane, and at that moment I wasn’t sure how I would be able to do this.
They both separately replied with the same thing, “You don’t have to go alone, I’ll do it with you.”
“I’ll do it with you.”
Five words that can change a whole heart.
The sting of our situation with Jane, is often not the condition itself, but the isolation that her condition leads to.
I feel it when I’m standing in line at her pharmacy. I’m usually surrounded by elderly people or teenagers who have busted their foot and their mom is there for the pain meds. I’m there to pick up 5 different medications for my epileptic daughter who will not survive without them. And she’s 3.
I feel it at parties, and play dates, and when I strain my back to get Jane in the car, out of the bath, into her pajamas. And we wonder, “How on earth do we sustain this as she grows, and grows, and grows?”
And now here we were on our way to getting a wheelchair. When Jane is in a stroller, we can kind of help her blend in. People don’t often get it right away. They usually (always) think she’s sleeping. We just smile and nod and agree even though they are wrong 90% of the time. We can maneuver her quickly in her small umbrella stroller. Go up stairs. Get her places fast. Pack it in the car in 5 seconds.
You can’t hide a wheelchair. You can’t hide that typical kids don’t use wheelchairs. Jane will. She is not a typical kid.
The isolation of the situation is what stings the most.
Yet here was my extended hand. My heart altering offer.
“I’ll do it with you.”
The stings of isolation stand no chance when confronted with community.
The knowing that while you may be experiencing unique things, someone wants to come in and get all up in that pain. They want to climb in with you and go wheelchair shopping.
We were not made to go it alone.
In 1 Kings 4, the prophet Elijah meets a widow. She’s almost out of time, money, and family. She’s isolated, hopeless, and she “has nothing”.
Elijah’s first instruction to her is to, “…go to all your neighbors”. She’s to borrow their empty vessels and God does the miraculous and fills every borrowed vessel with oil. Enough for her to sell and gain back her home and her hope.
I like how many translations all include the word “ALL your neighbors”. As in, “Get out of this isolated spot and go meet some happy people who want to help you. Not just one happy person, ALL the happy people”.
Her miracle could not take place in an environment of isolation. They had something she needed, but she needed to go let them know that she needed something.” And they had to be willing to sacrifice a little and say, “I’ll do it with you”.
My friend who offered to go wheelchair shopping with me has two kids of her own, a full schedule and a part time job. But I know she was serious. I know she would sacrifice a little of her vessel to help be my miracle. When you have an “I’ll do it with you” attitude, and sacrifice what seems little to you, you may actually be someone’s miracle.
Our need for community is evident all around us, isn’t it? Isn’t that why we share photos on social media? We want people to see our stories, have a part in our lives and give feedback into our situation.
I see the same thing with my girls. Haven is learning to talk while Jane’s speech is reemerging. Jane started talking more after she heard Haven start talking. Because community changes things and makes you brave again.
My heart still aches for the wheelchair to come. For the group pictures my daughter isn’t in, the parties she won’t be invited to and the procedures she has to face. But there is always a somebody with a vessel. Whatever is next, we will not do it alone, and neither should you.