Pack it up – Pack it In – Let us Begin…our journey
And the drum roll please…
Here are Kennady’s supplies for the next two weeks.
A lot O stuff here. This time around I (Erica) have managed not to get completely stressed out until this day before we leave, which is a big step in the right direction. Usually, I am a giant troll for at least 4 days before leaving.
sssskkkkrrreeetttcchchhhhh This is Robin interrupting my wife’s blog. Today, she has made up for all the days she wasn’t a grouch. Got it all in in one day. Ok, back to Erica….
My husband is a butt and I just punched him!
Anyone remember The Princess Bride and the old lady?? “LIAR, LLLLIIIIAAAARRRR” yeah, that’s basically it.
Ok, back to my explanation of the packing scenario.
This is how it goes down. I pack everyone except my husband, who meanders in the night before we leave and packs his stuff.
Ok, back to packing Kennady. It’s a lot and you can obviously see that.
The rest of us are allotted one checked baggage and one carry on.
Check back daily for more random spouse banter and updates on our adventure.
Choosing to Go to the Grocery Store
Sometimes the difficult decision is to “have the surgery or not”. Other times, it is “should we go grocery shopping today or not”
Every time Erica goes to the grocery store it is a spectacle. I (Robin) often try to get her to wait until I am home so she (or I) can go solo. However, there is always something going on and she can’t wait to go get her groceries.
It is a balancing act. 3 kids (10yrs, 8yrs, 6yrs). Shopping cart. A LONG list of supplies/food to purchase.
As she meanders through the store, they get strange looks. Of course, some folks are curious of Kennady’s condition. Some folks are asking themselves ‘why did they have more kids’. When we had foster care kids, I am sure people said, ‘who in the world are these people?!’ <<<<<SCRREEECHHH>>>> that is a tire noise for those of you who don’t recognize it. (now, insert song…”hold up, wait a minute, let me put some boom in it” and that should suffice for the interruption) I (Erica) am hacking the blog and adding in my own thoughts since my dear hubby wrote a blog and published it before I could add my own touch to it.
Yes. People did make comments. When I was pregnant with Avery, #3, people would say, “wow, you sure do have your hands full” to which my constant refrain was, “yes, but it is a good handful”. They would take long looks at us as we made our way through the store, pushing Kennady, pulling the cart with a two year old in it and a very large belly attached to me. Now, the comments have turned to stares and I am not quite sure if that is a good thing or not, I kind of enjoyed the small talk in the store. I am sure a lot of that has to do with the missing, super cute, chubby and smiling baby that was usually with me. Now they are bigger, louder and slobberier.
The awesome thing about us humans is that we keep growing and my little two year old is now a big 8 year old that does an awesome job at keeping his sisters chair going the right direction and not run anyone over. There is the occasional knock down of something here or there, but if that is the worst of a trip to the grocery store, we are good. I am still working on #3 to be in charge of driving his sister, then I will be sailing through the store, #2 driving the cart, #3 driving his sister and me, ME…walking through the store tossing things in the basket like a little kid at a toy store (until the money runs out that is)!
<<<Thank you for bearing with the interruption, now back to my husband>>>>
I am amazed when she comes home and everyone is alive, the eggs aren’t broken, and the milk is still cold!
We made a decision early on that Kennady’s condition would not take us from normal life. It was easy to say that when she was an infant. However, the bigger she gets, the harder transportation gets. The more difficult it is to keep her happy in certain environments. She can only stay in her chair for a limited amount of time. Then, she has to be stretched and diapers have to be changed. All these factors limit our ability to run out and do anything. Plus, our boys are still at an age where they require a lot of attention and ‘hands-on’ interaction.
We continually find ourselves reshaping our thinking. Get out! Don’t stop! Difficulties can shape decisions, but they don’t have to dictate or be the final authority. Improvising and changing is the name of the game. Get creative. Ask people for help. Pray for direction and strength. Rest. Stay home. Talk to friends. Stick to the non-negotiables.
Those are processes we use to keep on going.
One of the friends we have ‘met’ online
Here is a blog by Shelley Colquitt
Beautiful Beyond Compare
Before I had children I would think of what kind of child I would have. I imagined her beautiful beyond compare, she would be so sweet and kind, and her brilliance would shine through her eyes.
I never imagined having a special needs child. the words beautiful beyond compare, sweet and kind, and brilliance would shine through their eyes were not what I thought described a special needs child.
Obviously I had never met a special needs child.
Our Adventure on a Small Town Friday Night!
Chasing Calves and Riding Sheep! It all happens plus a lot more at small town rodeos in Texas! Check out these short videos of our adventures in Wimberley, TX this past weekend.
In Spain, bulls chase men! However, in Texas we tie ribbons on cows’ tails and see if our kids and pull them off for prizes. It’s called a calf scramble!
Kids (under 60lbs) can get on a sheep and see how long they can stay on! Here are our boys giving it a shot.
Summa Summa Summatime!
This summer has been very expected and very unexpected in lots of ways.
We have had some lazy days, some super fun days and way too many super busy days.
We kicked off the summer with having our nurse of almost two years just up and quit on us.
Talk a about a shocker!
We love her and she had become much like family to us. I (Erica) really thought that we were on cruise control and all was just sailing along. Until, I got the call from the nursing company that she would not be coming back to work for us.
WHAT?? Are you sure you have the right lady?? I was speechless. Totally blindsided.
I am currently in school to become a midwife and was working with a midwife and had a very busy schedule. All of the plates were spinning, and I wondered which would fall first.
We tried to contact the nurse and apologize for anything we may have done, but we got no response.
Completely cut off from her life. It hurts my heart. Having people leave your life with no explanation is hard.
However, I am sure there is a bigger picture that we can’t see.
Just as God does, we had a new nurse that came to work the very next day. She has been wonderful.
She is genuinely concerned about Kennady and her overall wellness and happiness. They do therapy, read, listen to music and nap (well, not the nurse, but kenna).
I decided to step down from my apprenticeship for the summer. That plate spinning was getting to be a bit much and I figured it was time to put something down to make our family function better.
It was a hard decision, but I feel good about it. I am continuing with school, just taking a break from the hands on part for the summer.
Kenna chilaxin while her brothers pose
We have been swimming, going to the library and doing all the fun summer stuff we can squeeze in.
The boys may drive me a little crazy, but I love them being home.
the craziness inferred in the previous sentence
We are planning a trip out east (in a RV) and we are all very excited. I am pretty sure we will never want to travel any other way with our girl. I am just daydreaming about not having to have her wedged in her chair for hours on end only to have to unpack the whole back of the van to get her out and stretch her at a gas station. WHOO HOOO!
Just stop and stretch right there! WHAT!!
this is pretty much what I will look like the entire road trip if my husband doesn’t drive like an 89 year old grandpa
I am getting a tattoo.
Just kidding. I thought I would throw that in to wake any of you up that know me and are thouroughly bored with this post already.
Another invigorating experience this month was having a caseworker come out from the government to audit our case through the Medically Dependent Children’s Program. This program has us covered from head to toe with Kennady. All of her medical expenses, nursing care and respite care. It is pretty much the bomb.
I was panicked in lots of ways. I thought for sure they would cut off our funding and we would be back to the no nurse, no house help scenario of the past. AAAAGGGGHHHHH.
I am not a organized person by nature. Having people here to keep me afloat is essential to the health of our family and our marriage.
We have a wonderful lady named Juanita who comes and helps us during the week to take care of house stuff. Basically, she does it all. Then, we have our nurse who helps with Kennady.
We are super blessed to have this help. It is the only way I can go to school, work and be a sane mama and wife, and even then, I am not so sane some times.
I have had friends that say “man, I wish I had a Juanita”. I just tell them, “go get yourself a disabled child and you too can have help around the house”. Was that too harsh? Oops. It is really all in good fun.
So, the long story made a little bit longer is that the auditor came out and gave us the amazingling sweet, good, joyous news that we were not going to lose any funding!
I wanted to ask her to be my third grandma! She was just sweet.
You know, the no non-sense, “son, I am gonna give you something to cry about”, but sweet “do you need some cookies and milk to make it better” kind of grandma. I just wanted to hug her, but that would have actually been creepy and she may have revoked our funding, so, I resisted and instead piled on an excessive amount of thanks.
Robin and I have also been slowly been working our way through a bible study by Timothy Keller, titled Gospel in Life. Wow, it has been deep. Not one you can just breeze through and say, yeah, check check. It’s more like…
Ugghh, ooff, ouch. Then, re-read. But, amazingly good stuff. Life changing stuff. Wouldn’t want it any other way stuff. I am sure there will be thoughts on this one at some point down the road.
So, this summer has been full of fun and emotions and lots of stuff in the middle.
If I come up with other randomness, I will post it for your entertainment.
Blessings to you and yours!
+Erica
Poker Game
Kennady officially beat us in her first game of math poker.
What do you say to someone who has a disabled child?
After our last post on “Curiosity is OK“, we had the question brought up: “What should you say or how should you ask questions about someone’s special needs child.”
Great question. Here is our stab at that question. Disclaimer: We only know our situation and personality. I am sure that other parents might feel differently. In fact, other parents that read our blog, PLEASE give us your input.
From our point of view:
- Genuine questions from anyone are better than long stares. It is ok to ask questions. It is awkward for everyone for you to stare long term. If your kids are staring at Kennady, it is completely appropriate for you to say, “She is different from us. Would you like to ask them how she is different?” At that point, if your child is interested (90% of time they are) you can approach the parent. If your child is not interested, you could end with something like, “Not everyone is the same. Some people can’t walk, others don’t talk well. Just because someone is not like us, doesn’t mean that they are bad or wrong or not ‘like’ us.” Teachable moment.
- Sincere heart. Whether you are with your kids or alone and you want to speak to someone with a special needs child, show your heart. Smile, be sincere. Most likely the parent of the child knows everyone is staring and is looking for people that will accept them and be interested in making them feel normal. Compliment them.
- Opening lines. Here are some ways to open the conversation. Of course these depend on your situation and the other family:
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- “Your family is beautiful…please tell me about your son/daughter”
- Offer to help if there is a quick need at the grocery store, bank, etc.
- “I would love to hear more about your son/daughter”
- Ask specific questions about the scenario: “have you found it hard to find parking spots” …
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- Keep going. If you are flowing in conversation and you both have time. You can ask things like:
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- What are your biggest challenges?
- What is school like?
- How could our community help families like you better?
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What if you say something wrong? Over the last 10 years, we have only found one statement that kind of gets on our nerves: “God only allows for special parents to have kids like these…” We heard that a lot from people early on (with the best intentions). After a while, we said, “We don’t want to be special. We would love to be normal.”
I wouldn’t try to give deep encouragement/advice unless you know them really well.
Just be friendly, interested, accepting, and helpful.
Curiosity is OK
Little kids always come up and stare at Kennady. We have the opportunity to tell them about being born different, her brain is different, her legs don’t work, etc. They continue to look puzzled and then “it” clicks and they warm up to Kennady. Many of them hang out with her and like to play with her. Here is a pic of us talking to some kids at a park recently.
It is interesting how adults are so timid and kids are so blunt. As adults, we are scared that we will make people feel uncomfortable. We are afraid we will say something wrong or stare too long. Coming from our perspective, we are glad when people ask about Kennady, her condition, and her story.
A Picture of Hope!
When looking at the stats for our websites, I saw that the search term “30 weeks pregnant hydrocephalus” brought someone to our website. So, I went to google and searched for that term. When I clicked on the images pages, I saw Kennady’s beautiful face. What a great picture of hope for people who find themselves in that place during their 30th week!
MadeMeaningful Tour
We are taking a vacation (July17-28) and calling it the MadeMeaningful Tour. It actually is quite a tour, and we will be talking about our story all along the way. Check out our stops: (please people, just because you know our stops now, please do not have the paparazzi following us. and those of you planning to rob our house, we will have people in it. So don’t bother. Plus, a SMPD officer goes to our church and will be checking it out daily. ok, enough of the parenthesis sentences.) We will be blogging every day with updates!
Night 1: Desoto National Forest (Mississippi) This is a quick pitstop to sleep and rest up.
Nights 2-3: McKinney Campground (Atlanta area) On Thursday, I (robin) will go to an all day coaching session with Tony Morgan. This has been an awesome experience for me as a leader. The family will hang out at the lake and have fun.
Night 4-5: The Kelly’s – We will hang in Winston Salem NC area for a couple days with our dear friends Michael and Annette Kelly. They pastor a church where we will speak on Sunday (July 22).
Night 6-8: Families for HoPE Conference. This is our first time to attend this special conference for kids with HPE (Kennady’s Condition). We are so excited to meet all the other families and share stories with one another.
Night 9-10: Lowerys. Of course, all trips to the East Coast involve at least 2 days with the Lowerys (Robin’s sister and family). They live in Spring Hill, TN.
Night 11: We have no idea. We will stay one night on the return trip home. If you are between Nashville area and Austin, let us know, we will crash your pad!
We are so blessed that Advanced RV rental gave us a great deal on a SWEET RV. We will be traveling in style across the states. Also, we want to thank our church family for allowing us to go on this break and for helping us financially with the expenses. THANK YOU!!
What People are Saying