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.
One night recently when Kennady was in the hospital, Kennady’s home health nurse came up and sat with her so I could go out get some dinner and feel the sun on my skin. On my way out, I decided to step in to the gift shop because they had these big shiny red balloons that said “SALE”, which is an instant magnet for most women.
I proceeded to call my husband and tell him that this store had a very cute necklace and that it was thirty percent off, which made it only a mere thirteen dollars, and that seeing as we are in such a stressful time I should really do some sympathy shopping and buy this for myself.
Alas, this ploy did not work and I made myself leave the store empty-handed, content that I could use my money to buy myself food to put in my belly instead.
On my way out the door, there stood sweet Jesse. Jesse gave birth to her precious baby boy Wyatt, and her second child with Cystic Fibrosis, just a little over two weeks ago. She was on her way in to see Wyatt in the NICU and I was on my way out to get something to eat.
We stopped and chatted for a while and began to discuss our children and their special needs and how living a life with a special needs child shapes you in so many ways you never realized it would or could.
One of the ways that this life is shaping us, is through us shaping our children and the next generation.
Robin and I feel strongly that the challenges we and our children face in this life will build our character and make us stronger, if we allow it.
Character:
1 one of the attributes or features that make up and distinguish the individual
2 the detectable expression of the action of a gene or group of genes
3 the complex of mental and ethical traits marking and often individualizing a person, group, or nation
Wheew! That is a lot of things to cover, but we will focus on just one point this time around. Character: One of the attributes or features that make up and distinguish the individual.
Character traits can be good or bad, strong or weak, life-giving for life-taking.
Our boys both have a sister with multiple special needs, food allergies and last but not least, they are preacher kids (holla back atcha if you know what I mean).
Talk about opportunities to build your character.
Our society is so comfort driven that these things seem like huge boulders and walls to overcome.
This type of stuff grieves people, makes them want to stomp their feet, yell and say “this isn’t fair!!”
Things in the special needs world are complicated. Life in general is complicated and not “fair”.
Life isn’t “fair”.
Did you read that??
It’s not. No two ways about it.
Part of our problem though is that the America we live in today is a fountain overflowing with “Fairness”….or is it really?
We have abused the word fair until it is a worn out rag doll that had all it’s hair cut off and no eyes and looks like something totally different from what it was intended to be. The version of fair that we see is something along the lines of “if they have that, I should too”. Merriam-Webster defines this type of “fair” as specious: having a deceptive attraction.
Because something looks more attractive and like something we think we should have, we seem to think this is the “fair” option.
It seems like it is ingrained in us from birth. So when we have a problem in our lives, we naturally compare our life to someone elses and point the proverbial finger and shout “Hey! That’s not fair! My car doesn’t have shiny sparkly paint!”
So how do we go about re-training our brain, flesh and every other thing in us to honor and respect these scenarios in our lives?
First.
Faith. Faith in God. Faith that, whatever comes, good or bad, He is in control. Period.
2 Corinthians 4:17 ~
For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison
This is where the brakes are put on, on “fairness”.
Each of us has been blessed with an opportunity to live this life. To take each moment, each good time, each bad time, each hardship in and make a choice.
Are we making it match what the word of God says or are we making it match what the world says?
If we choose to make things match up with what the world says, we have chosen to fail. Life will never be “fair” and we will always get the short end of the stick.
With our boys, we remind them daily that “life isn’t fair”. They cry because they want to be like the other kids and eat whatever they want without fear of anaphylaxis, they want to go places without people staring at their sister, they want to watch movies that other kids watch, listen to music that other kids listen to. For Jesse and her children, this means not going to parties, not being around other kids with CF, not eating certain foods and many other issues.
During these times we give them space to share their feelings and validify the hurt they feel. After hearing them and letting them process through these things, we gently remind them, that this life isn’t fair. They are different.
Whether the situation is by choice or something they are born into, they are processing what “fair” looks like in this world. They are learning to throw out the beat up rag doll that doesn’t represent any part of the true nature of “fair”.
You can’t divide life “fairly”. You can divide a cookie in half and make it “fair” to two people. However, making this beautifully complex walk of life “fair” is robbing ourselves of an amazing opportunity to develop character. Character, that reflects mature humans able to live a life that is beautiful, even when life seems to be falling apart at the seams.
So, I hope that when my boys grow up (and me too), that we are able to not become blithering whiny babies at every turn, crying out that “life” (this beautiful, amazing and crazy hard at times, life) isn’t fair.
The bottom line…
This life is about living for God and to Him be the glory in everything.
Cry, give yourself some space, then pull up your boot straps and get on with it.
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