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.”
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.
Jeanie Jacobson says
Oh sweet Hilary thank you for sharing your heart and my heart hurts for you and your situation. Continuing to pray for a miracle of healing for precious Jane. Regarding the wheel chair I feel a little of the pain of that as well. I recently had an accident with my walker and Alan said babe we’re going to have to get a sturdier walker and I said, do you know what that’s called – it’s called a wheelchair! When I said that it was like a knife pierced my heart and my emotions instantly took a nose dive to a dark place. I’m still processing from the words I spoke with my mouth (wish I had kept my mouth shut) – yet I continue to trust in the Lord and His plan for my life and pray for healing just like you are doing. May the Lord continue to sustain and strengthen you and Rich and you’re so blessed by the community around you and we are blessed by you. You’re in my thoughts and prayers and I understand. Hugs, J
mm harris says
Another well-written post from the heart, and one, btw, whose message could apply to ANY of us confronted with an overwhelming challenge. So useful; so grateful that you share…..MJCH love! xoxo
terces engelhart says
Aww Sweet Hilary, your heart is so pure and your love is so deep. While I hear your pain I also know it is the pathway you are on to the miraculous. I love you and your sweet family. Thank you for sharing with us all. Terces
Rina says
This reminds me of my favorite poem/story. Actually it was my dads favorite too. “Footprints”.
In life’s hardest moments we are never alone. Having support of friends and family is such a blessing, but even more our Father in heaven is right along side us, or sometimes even carrying us through.
Prayers for you and yours my friend. Your thoughtful writing touches my heart. Wishes of healing for Jane, and comfort for you and your husband through this next step. Thanks for sharing your journey with us all, so that we may grow and learn and experience your pure selfless love.
Joshua 1:9
Much ❤️
Teresa Cruz says
So beautifully written, I pray for healing for your precious daughter. Epilepsy is so scary my mom has been epileptic since she was a baby too. She went about on a drug study about 15 years ago and they thought if it was one side of her brain that they could do surgery it wasn’t, when she had a seizure it was her whole brain so they kept trying new medications and I remember walking into the drs office with her and they told her because they were trying different meds for the past 2 years as she was on the study and nothing worked. They finally gave the last medication they had to try and it finally worked. She has now been seizure free for over 13 years. I am praying this for your daughter gods got this.
Gayle Belanger says
I’m never giving up with you! (worded correctly)
Love you friend,
Gayle
Mary Ann says
I love you Hilary & your precious family! I love reading about your journey, you are amazing & I know it brings so much Hope & encouragement to those around you. things in our life are just so hard sometimes, but your attitude & transparency amazes me! I continue to stand & believe for a miracle for your little Janie ❤️
Jennifer Armbright says
Hi Hillary,
I saw you preaching in church today… we may not know each other but I can seriously relate to what you are going through. My daughter is 4 and a half and has cerebral palsy and epilepsy. This journey is surely not easy, but you are not alone. When you announced medical fragile child, I just knew I needed to look more j to your story… thank you for being so open and honest with your feelings.
Hoping to hear more into your story,
Jennifer Armbright