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.
It has been one week since Kennady went into the hospital and today she goes back to school! She was admitted into Dell Children’s hospital because of severe vomiting. The source of the nausea was low sodium levels. It took eliminating all food and drink to get her levels correct again. It was a drastic step. The doctors telling you that your child can not eat or drink anything for the next 36 hours is intense. Erica actually asked them, “Would you treat a normal child like this.” The answer was yes.
It only took a few more hours and she was doing better. We were sent home on Friday night.
During that time, life goes on. Our other two boys are doing their 6yr and 8yr old thing. I have to pastor a church. Erica balances life, school, mothering, being a wife. The rest of the world doesn’t stop. It takes the GRACE of GOD to maneuver through. We decide several things:
1. We need help. When people ask what they can do, we have learned to tell them. It is so difficult. Our natural response is to say “Thank you” and then not use their help. However, we have learned that people are blessed when they help and we need the help. It is a double blessing. Every time we go through a challenge at this level, we have a huge outpouring of prayers and people calling to support. We had people buying breakfast, visiting, helping with our kids, and more. Here is a clip that “Grana” took when she went to field day with Jude.
2. We need to connect. Before the storm comes we need to connect with people. We make the conscious decision and effort to connect to a local church body. I don’t know what we would do without our church family.
3. We need to focus on the need. We need to be there for our daughter. God has put us in her life to raise her, provide, and protect. We need to research the conditions. We need to TAKE INITIATIVE with the doctors and nurses.
4. We need to keep moving. We must have balance and continue to walk through the rest of our life with as much normalcy as possible. One day, I took the boys to my parents house and we worked on a new playhouse. Or should I say play mansion??
All of the movement is a dance with life. We take a step and then life takes a step. We move and then conditions change. The only way we are able to smoothly move is through the Grace of God. His power enables us. He has endued us with the ability to move through challenges and valleys.
As of late Wednesday night Kennady’s sodium level was at 128. That is up from 125. The doctors are trying something (that we think is) drastic.
They are not feeding her or giving her anything to drink for up to 36 hours. They are giving her no medication or an IV. This is a strong effort to get her levels up to 140. We are not sure what they will do if this doesn’t work.
It is really complicated. We believe that God will work it all out.
One of the most difficult decisions we had to make was whether I (robin) would go on a scheduled trip to Atlanta on Wed-Thurs. Erica and I talked a great deal about the trip and Kennady’s condition. We finally made the decision that I should continue the trip. I return Thurs evening. We have such a fantastic group of friends and family that really nothing skips a beat. Our boys are well taken care of. Our PromiseGroup met without us. The church staff continued to make progress (I think). I haven’t checked on them in a while. Ha!
Erica and I have gotten to a healthy decision making process. We weigh all the factors and make a decision where we are both in agreement. I have found that these road bumps actually bring us closer together. We respect one another and love on each other. We see the body of Christ rise to the occasion and we feel really loved.
We are hoping that the sodium levels increase very soon and we can bring Kennady home on Thursday. This is still an option at this point.
Monday afternoon Kennady started throwing up big time. This is not anything new. In fact, she throws up quite a bit and we have gotten used to it. Honestly, the ‘throwup’ is not near as bad as other kids because she only eats ‘formula’. Anyway, it is not easy and we always have to be on guard to turn her on her side so that she will not choke on it. One time that happened as a 2yr old and she stayed 10 days in ICU with pneumonia.
It took a turn for the worse on Monday, when we begin to see blood in the ‘throwup’. At that point, we decided to take her to the ER at Dell Children’s hospital in Austin. I insisted that I be the one to take her. Erica stayed home with the boys.
When we got there (8:45pm), it was PACKED with people. Fortunately, they got us in quick (advantage to have a child with special needs). As soon as she got to the ER room, she started smiling and perking up. Here is a pic.
From that point on, she did not throw up and had no other symptoms. They did a catscan and xray to confirm that her shunt had not clogged again. They tested urine for infection. Nothing…Well almost nothing. They tested her blood, but for some reason did not check her electrolytes. So, everything looked normal and we were sent home around 1am.
Everything was normal until 4pm Tuesday. She started throwing up big time. At this point, she couldn’t hold water down and we decided to take her back to the hospital. This time Erica went and made sure they checked all the components in the blood. They found that her sodium levels were low.
From birth she has struggled with her sodium levels. She lacks a hormone that regulates her kidneys. When she doesn’t get the right amount of medication, she pees too much or too little. This throws her endocrine system off. Sodium levels are affected and she struggles. The worst case scenario is that she would pee herself into dehydration and eventually die. As she grows and her body changes, she needs more or less of the medication. Obviously, there is really no way to determine that we need to change medication until something like this happens. This condition is called Diabetes Insipidus. It has nothing to do with the other type of diabetes you are probably familiar with.
As of Wed morning, she is in the hospital and we are waiting for her levels to balance out. This occurs with changing the amount of fluids she gets and the medication given. Thank you for the prayers and support. We are so grateful to have so many loving people in our lives.
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