So, I (Erica) thought I would discuss how life is hard and the real stuff about having a child with special needs, then I thought I would talk about how we deal with it…so here it goes.
They say that having a child with disabilities can break your marriage. There are a lot of stats thrown around that are a bunch of bologna (which naturally infers disgustingness)
I read a great article, that was actually researched to some degree, on divorce in families with special needs children. It actually seems as though the stats that we have been told for so long aren’t quite as devastating as you might have thought. In some cases, children with special needs can actually make a marriage stronger.
On our blog, we often say that Kennady is a blessing, and she is, and focus on all the good that life with her brings, which she does.
However, there are plenty of times that just plain stink.
It IS hard having a child with special needs. It isn’t always cheery, fuzzy and warm.
I don’t want to turn this into a complaint session, primarily because it is not a complaint, simply a statement of truth; secondly, because I strongly dislike whining, complaining and general martyrdom for things that one should not attain martyr status for.
Recently, I was watching a documentary on vaccines and there was a mother on there that had a son with Autism. She made a statement during the documentary that was something along the lines of {people say that children with special needs are a blessing, but it isn’t. It isn’t a blessing to have a child that isn’t the way that they want to be, or that we would want them to be.}
I have thought about it before, about how our perspective isn’t the same as other peoples. This really hit home for me. It was one of those uummpfff moments. A punch to the gut in your brain. I don’t have a child that is mobile and could potentially harm themselves or someone else. We don’t experience lots of really hard things that other families do, but we have our own times.
Our focus through this blog, is to bring to light the joy our children bring us, regardless of their abilities. This joy that we are shinning a light on, often leaves out the reality of the shadows.
No matter how much joy our children bring us, we have some tough mountains to climb.
For some families, it is making sure you have extra locks in place so that your child doesn’t run out in the middle of the night.
For others, it is sleeping with your child beside you every night of their life to ensure that they are able to breath.
There is an immeasurable list of things families will do to preserve life in a way that keeps everyone the happiest, and if at all possible, sane.
Here is a list of things that I find very frustrating/hard/crappy/inconvenient, about life with our special needs child.
1.) Going out in public and needing to change a diaper of a child bigger than the infant/toddler changing table is made for.
2.) Your husband having to change diapers on his adolescent daughter.
3.) Puberty
4.) Isolation – Because you can’t just leave your child with complex needs with anyone.
5.) The unknown
6.) Accessibility in stores, restaurants, other people’s homes
7.) The large amounts of supplies, kits and randomness needed at all times
10.) Not being able to know how my child feels specifically
All of these things are part of our daily lives and things we have to process.
How we cope with the reality is pretty straight forward. We pray, admit our shortcomings, we are open about our fears, we surround ourselves with our church and family, and we laugh…a lot.
Robin and I deal with a lot of things through humor. It’s just how we make it through.
When we started tossing around the idea of a blog, we came up with some of the following titles. We ended up with Made Meaningful.
Some of these are funny. Some are serious. Hopefully, you will laugh. If you are offended, please skip to the next title, maybe it will un-offend you.
The grass is yellow on our side
Hearts that serve
So you wanna have a kid…well he is going to be sick
H.o.P.E. floats
Life is beautiful
Imperfectly beautiful
Oh $&%@, I have a handicapped kid!
Colorful
Life Junction
Empty promise
Awkward!
A Special Heart
Crossing a/the broken bridge
Bridging brokenness
Life Is Beautiful
If you thought the first year of marriage was hell…
A meaningful life
Life here in our house is probably a bit skewed to the humor side. I have often said that if Kennady could talk, we would all be in trouble.
One of Robin’s favorite things to say when I call home while I am out, is, “Kennady is throwing up, Jude has a fever and Avery is feeding the puppy chocolate”. None of which are true, but some how that sick mentality seems to be funny.
That, or, he answers the phone as if he is just waking up from some long winters nap. “uh…hello…”
Basically, we fight, we laugh, we cry, we laugh…uhh is this turning into an Alanis Morissette song??
The bottom line, having kids with special needs is hard. Making the choice to embrace what we have and focus on the good is far better than living in the darkness of resentment and “life isn’t fair”.
So yeah, this isn’t the year of the Norman Rockwell Christmas for us. In fact, every attempt I’ve made at celebrating the Advent season has been derailed in some fashion. I’ve yet to be able to sit through the entirety of any service or function that is Christmas related. That’s been tough on my soul, as all I want is for life to slow down enough for us as a family to be able to enjoy some (dare I say, “leisure”) time together and to celebrate all that the birth of Christ has meant for our family, especially this year.
But just like with all those prenatal prayers when I asked God to heal Pearl, he is up to something different than what my heart desires. And just like that season of brokenhearted prayers when he said “no” over and over again, I can’t see what could possibly be better than what I am asking. Alas, my head trusts what my heart doesn’t. That tends to be the case most days right now.
It will be Christmas Eve by the time I am finished writing and posting this, and we are at Vanderbilt Children’s Hospital again. Pearl has pneumonia and that is not something to be taken lightly for a child with HPE. In fact, it can often be fatal. She was admitted on Saturday, so the doctors can be extremely proactive on the front end to battle this. She’s had a rough week and the last 2 days especially have been rough. Tonight, she is resting well. They have adjusted her medication and she’s getting heavy doses of a lot of drugs to try and battle seizures that are brought on by pneumonia. The hope is to once again balance the medication in such a way that her seizures are suppressed, but to not medicate her to the point of affecting her breathing. It’s a fairly calculated balance that sometimes takes a few days to dial in. We need to get rid of the fluid build up in her lungs, and that is a fairly urgent goal.
The older kids are doing well. Since we’ve only been here for 2 days now, the weight of the family being divided hasn’t yet started to take its toll. I imagine a bit of the weight will set in on Christmas morning when some of us wake up at home, and some of us wake up at Vanderbilt. I’m not sure what that’s going to look like yet. It’s not as though the Christmas morning gift giving is a huge part of our family celebration but it’s a huge part to the kids, so I’m sure we’ll figure something out.
I’d be lying if I said I wasn’t missing the sentimentality that is usually associated with this time of year, and that is tough. I know it’s all silly stuff, some of which is completely meaningless, but it’s silly stuff than often reflects deeper feelings. I wish I could clearly articulate to you why God is not allowing the sentimental warmth this year, and why he has instead, chosen this for us. I can still see gratitude way off in the distance. I can even see clearly with my eyes all that we have to be grateful for. Even as I type this, I’m sitting in a room at Vanderbilt… Vanderbilt…A prestigious medical community that is right in my back yard! My family isn’t split by hours of travel between our home and here. My daughter is here with me, about 5 feet away. I never dreamt that I would be with her on Christmas Eve. It’s incredible, though my heart is still pounding with frustration, worry, and entitlement.
So this Christmas is hard. This year is hard. Everything’s hard. But God continues to mold our hearts to be more like his. He continues to say “no” to what we ask, and instead offers us something richer and better than we could ever fathom. He continues to keep us at bay from our own desires and he uses his rod and his staff to shepherd us along the path. He continues to watch over all 3 of our children, caring for them and transforming their character to be more like his. He continues to provide for us, and continues to weed through all that needs to change in our hearts. He continues to give us difficulty, and then he equips us for it, and often times, on the backend, shows us what he was up to the whole time. I’ll take it. I’ll take this life. I’ll take a split family Christmas over sentimentality, if that’s what he’s doing. Though my heart can’t see it, my mind can clearly see that whatever he is doing is better than what I would have chosen for myself.
So Merry Christmas from The Brown Family! Thank you for participating in this life with us. Thank you for not merely observing. Thanks for taking the time to read, and please pray for a quick recovery for Pearl. She needs to clear out this fluid before it get’s worse.
In our last post, I (Robin) wrote about how we look at death. After a discussion with a new friend, I realized that how we look at ‘good and bad’ also dramatically affects how we live.
We all know that there is a progression with life. The older you get, the wiser you get. With that knowledge progression comes a different perspective of what is bad. For example, a child is distraught over not getting candy or cries profusely when a $3 plastic toy breaks. The parent comforts the kid, however, she knows that the situation is really not ‘bad’.
The next level happens around adolescents/teens. Pimples are the end of the world. They are horrible. Then, older teens and college students have another set of good and bad. I have counseled several college students lately that have struggled with losing a boyfriend or girlfriend. Their world is crumbling all around them. They are swimming in a sea of ‘bad’. Again, as older adults, we look to these situations and think they aren’t that bad.
The reason we think things are not bad is because of our experience of much worse things. When life gets progressively worse, then when we see minor issues: broken toys, pimples, and girlfriends and think of them as small hurdles.
So what happens to an adult when rape, incest, murder, disease, bankruptcy, suffering children or other haunting life situations happen? What is our perspective on life? Especially, from a ‘God believing’, faith perspective… Why does God allow these ‘real’ bad things to happen? How do we deal with them?
The truth is that they are bad, and God does allow them.
What is His reason for allowing them? Does he look down at us (when facing a huge challenge) and have the same perspective we do of our 4 year old when she is crying and not getting her way? Does he allow it because he thinks it is not that bad, and we just need to get over it?
All those questions lead us to this… If he allows something like rape is that because he has seen something (in his all knowing power) much worse than rape and therefore, he doesn’t really think that we should fret over it?
No. At some point there is a end to the ‘bad’ scale and getting over bad is not simply graduating to the next worse thing. God is able to handle all bad things because he has a clear understanding of how Good He is. At some point, we will find the ability to deal with difficulty when we get a better picture of the power of God…not more life experience. The School of Hard Knocks does not have a solution for everything.
When we suffer and simply have no idea of how to deal with the pain, then we should rest in the fact that there is more God to know. The good of His attributes are more powerful than the bad of situations. If we aren’t living in that realm of consciousness, then we pray. We pray for a better understanding and revelation of God before we pray for bad things to go away. If we are more like God, then we understand like He understands. We live in the truth that strength and power and are able to face any situation.
Sometimes, God’s power overturns wrong here on the earth and we experience a supernatural miracle. The wrong is reversed. At other times, God doesn’t reverse the wrong on earth but he gives us the grace to live through the situation.
Heaven is the ultimate culmination of God’s goodness and where all wrong is reversed. Tears are dried. Timothy Keller says in The Reason For God,
The Biblical view of things is Resurrection…not a future that is just a consolation for the life we never had but a restoration of the life you always wanted. This means that every horrible thing that ever happened will not only be undone and repaired but will in some way make the eventual glory and joy even greater…
At the final scene of Lord of the Rings, Sam realizes that his friend Gandolf was not dead but alive. He cries, “I thought you were dead! But then I thought I was dead myself. Is everything sad going to come untrue?” The answer of Christianity to that question is…yes. Everything sad is going to come untrue and it will somehow be greater for having once been broken and lost.
This is our hope now. When we face the reality of our broken world, we find peace in the future destination of Heaven. We pray “Maranatha”. Come ever so quickly, Lord Jesus. We long for the presence of the Lord. We long for more revelation of God’s attributes. We desire to be more like Him. And if that is where we find ourselves…where else would we want to be?
Sunday, we got the devastating news that our neighbor was killed in a motorcycle accident. We have known his family since moving into our neighborhood in 2009. He was always nice to talk to.
They always have the most lights in the neighborhood. A sight to see!
His grandkids live with him and his wife, so naturally our kids often go over to their yard and play. They also often walk to school together.
Last night, Erica and I had to talk with Jude and Avery about the whole scenario. We were eating around the dinner table. Laughing and joking around about the day. We joke so often. In fact, our kids’ sense of humor is even stronger than ours. So, those of you who really know us know that is a lot of humor. Anyway, it was difficult to get the conversation to a point where we could break the news to them. I said, “Guys, I have to tell you some sad news.” They both started smiling. “No… this is serious.” Erica chimed in to help settled the tone, “Guys, this is really serious.” They both settled and got a serious look on their face.
I didn’t realize how difficult it would be to actually tell the very short story that we had been told. Their faces were so solemn. It is difficult for us to expose something to our kids that will break their heart. We want to protect them everyday from anything troubling. However, life often hits us hard. We have to learn ways to reveal truth. These are situations where we can all learn to trust in God and ‘lean on him’.
“Guys, Mr Johnson was in a really bad accident on his motorcycle and he didn’t make it. He died.”
Both of their faces sank. They slowly started eating again and there was silence for a while. Erica said, “Do you have any questions?” Jude wanted to know what actually happened. We didn’t know the details so we told him that. We discussed it a bit more and Jude finally said, “I am having trouble processing this.” (He is 8yrs old)
We all are looking for ways to process difficult news. What is our frame of reference? Do we see life ‘with windows’? Or do we see this life as the end of everything? If we view life with windows, then we understand that this life is important, but it is not the only one. During our life, we look out spiritual windows and see glimpses of eternity. The windows allow us to have hope that at the end of this life (when we walk through the door of death) we will move to another world. Without these windows, we live in a dark existence. Fearful of every move because it could be the last of everything.
Viewing the world with eternity ‘windows’ doesn’t make all the pain of death go away, however, it gives us a frame of reference. A way to process. We pray and then the Spirit of God brings comfort.
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.
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.
So, I (Erica) thought I would discuss how life is hard and the real stuff about having a child with special needs, then I thought I would talk about how we deal with it…so here it goes.
Life here in our house is probably a bit skewed to the humor side. I have often said that if Kennady could talk, we would all be in trouble.
We all know that there is a progression with life. The older you get, the wiser you get. With that knowledge progression comes a different perspective of what is bad. For example, a child is distraught over not getting candy or cries profusely when a $3 plastic toy breaks. The parent comforts the kid, however, she knows that the situation is really not ‘bad’.
We all are looking for ways to process difficult news. What is our frame of reference? Do we see life ‘with windows’? Or do we see this life as the end of everything? If we view life with windows, then we understand that this life is important, but it is not the only one. During our life, we look out spiritual windows and see glimpses of eternity. The windows allow us to have hope that at the end of this life (when we walk through the door of death) we will move to another world. Without these windows, we live in a dark existence. Fearful of every move because it could be the last of everything.
What People are Saying