Thursday, September 21, 2017
Cold and flu season has arrived as usual with the dropping temperatures. While a cold or round of influenza isn't a big deal to someone who is relatively healthy for Elizabeth this means we need to be careful. This year we are getting a reminder of why.
When we homeschooled, Lizzie was insulated from the majority of the typical illnesses that kids share with each other. Now that she is back in public school though and so is Rebekah they are both being exposed to a lot of new things we haven't had to deal with for a while. This may seem like typical kid stuff for everyone else, but for Elizabeth, it means a lot of watchfulness and making sure she stays healthy and she isn't even immunosuppressed.
Last week, Beka wasn't feeling well. She had a sore throat and stuffy nose and a slight cough. I figured it was allergies and still sent her to school. Now I know it wasn't allergies, it was some virus and now Elizabeth has it and began showing symptoms Monday evening. I kept her home on Tuesday so she could rest some and her color improved enough that I felt she could return to school on Wednesday. I should have kept her home an extra day and I'll be kicking myself for that a while. We are approaching Friday and I know Lizzie will be remaining home. She is coughing deeper and deeper from her chest, so tomorrow we go to the doctor's office and get her checked out, but more importantly, she is staying home and will spend the weekend resting, drinking plenty of fluids and trying to get her well.
I hate asthma. I hate that it means her respiratory system is weaker than others. I hate late night ER runs and frantic calls to doctors when medicine and inhalers don't cut it. But what I really hate is sitting by watching her struggle and being unable to do more for her other than trying to soothe her and keep her calm. I feel so helpless when these spells come.
I will pray, always, and it really does help. I know that God is with her and He knows my fears and worries. It soothes the fear and feelings of being out of control. Because in truth, life is short. We do not have control, we have an illusion of control and daily, I take my hands off the wheel and give it to God. Sometimes this is once a day, sometimes it is hour by hour, minute by minute and quite a few times second by second.
So tonight, I will probably sleep in the living room, listening to make sure she doesn't go into distress. Tonight, I will pray and give my daughter to God, because he is the Great Physician and tonight, I will trust that come what may, He has a plan and someday I will hopefully get to see it.
Tonight, I will read, I will journal, I will blog, I will pray and pray and pray. I will pray for blessings on my family, I will pray for healing for Elizabeth, I will pray for Sarah and James and his little girl Victoria. Tonight, I will pray that tomorrow Elizabeth will be feeling much better or that we can get her some extra support to help ease her breathing.
Thank you, Papa, that we can give you our burdens and worries. Thank you that you know our needs even before we come to you but that you like to hear us give them to you anyway. Thank you that ultimately you are in control and you know the bigger picture.
This morning started off ringing - literally my phone was ringing at 5:30 a.m. It was a friend on the East Coast, she had accidentally called me. So I fell back to sleep for a whole whopping hour before it was time to wake and get the girls moving. As a rule, I struggle with going back to sleep, but today that was not the problem at all. YEAH!!!!
Then Beka went to the bathroom to brush her teeth. The problem was she closed the door. We knew the knob would need to be replaced shortly after we moved into the house. The knob likes to stick and the girls all share one bathroom. It's nice having a separate bathroom so Chris and I can keep our bathroom cleaner than the girls keep theirs. Today, however, I heard the familiar sound of someone wrestling with the guest bathroom door. Usually, after a few tries, I hear a familiar click. This was not the case this time around. Instead, I heard it become more frantic as Beka realized she was trapped in the bathroom. I quickly went to go help her, but alas, it would not budge. So I grabbed a butter knife and went to work removing the knob so I could see inside and figure out the problem.
The problem is that the doorknob and it's mechanism are older, so the inside mechanism is breaking down and it got stuck in the position to keep the door secured. It took a little finagling but I finally got the mechanism to move into the position to unlock and we were able to free Beka. Chris will be buying a new knob and system on his way home from work today.
Like the doors knob that became worn after years of wear and tear, our spiritual life can become stuck sometimes. Years of trials can wear us down and we can become stuck. It's easy when we have spiritual valleys or even deserts to wonder if God cares. We know he does, Jesus tells us it is true. Remember we read in Matthew 6 yesterday, we learn from Jesus that God cares for the animals, and how much more must he care for us?! Sometimes in the middle of the storm, it is hard to feel God's presence, but He is still with us. I love the Casting Crows Praise You in the Storm and the new Mercy Me song, Even If , here are the words to the chorus:
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
Wednesday, September 20, 2017
If you follow my blog, then you know of my love for Fall. More to the point, I love all things Fall, except for Halloween, I can take or leave it. I love the colors and so many other things about Fall, but one of my favorite things is Thanksgiving. I love finding reasons to be thankful and I find that especially in times of trial or exceptionally awful times that making a list of things to be thankful for, keeps me humble, and it helps me keep my eye on the fact that even though tough times come, so do good times, it's really all about waiting out the storm.
I also find that in listing my reasons to be grateful that it helps me stay positive. In a world with constant headlines and negative press right and left that can be a daunting task. It takes an awful lot of energy to find good things in bad situations. It also doesn't take as much energy to find the negative, but in reality how we view tough times is about our perspective.
Right now, money is tight for us. We are managing, but there isn't a lot of wiggle room for extras really. I can choose to be pessimistic or I can choose to remember that God is always providing for our family and that He is faithful. I choose the latter of the two. And I have noticed that it helps me sleep better. Before I would have been a mess, I would have had awful insomnia and struggled to stay positive. It's easy to default to that, but I choose instead to be thankful that we have food to eat, a roof over our heads and enough money to pay the bills. It sounds odd I know, but it is still important to keep that positive attitude because it also means I am doing several things. First, staying positive means I am trusting God to take care of us. As someone who came from instability that isn't an easy task for me to accomplish. However, I know that in Matthew Jesus himself said, "Therefore I tell you, do not worry about your life, what you will eat or drinks; or about your body, what you will wear. Is not life more than food and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?" Matthew 6: 25 & 26 You are more valuable than the animals God created? He takes care of them, so how much more is he going to take care of us?! That's an awesome thing to think about. Those verses have comforted me more often than I can tell you. Secondly, I am slowly giving up control. Believe me when I tell you that giving up control is not easy. I like being in control, but I know that when I am in control that I mess things up. And when I give God control, I see a much more favorable outcome. So as I age, I am more willing to let God have control. And when God has it under control, I know I can be thankful.
What are you grateful for today? I will share my list, feel free to share your reasons to be thankful in the comments section.
1. I am thankful that God always takes care of our needs and that he is patient with me when I struggle to have control.
2. I am thankful that Chris really likes his job and he gets to chance to travel for work from time to time. He enjoys traveling and seeing new places and things.
3. I am thankful that Lizzie and Beka are both feeling better today after needing a down day yesterday.
4. I am thankful that we have phones now so we can stay connected to other people. Can you imagine how lonely people must have been before phones came along?
Those are just a few things I have for today. I would like to challenge you to find reasons to be thankful this Fall, yes, I said Fall. Make this a season of being Thankful, not just for the holiday but for every day and see how it changes your perspective.
Tuesday, September 19, 2017
Today is one of those days when I have two out of three sick children at home. I am one of the fortunate few who gets the privilege of being a stay at home mom. It isn't something I take lightly because I have friends who don't have that option. And I happen to like being a stay at home mom.
So what do I do when my girls feel under the weather? It isn't a ton of fun, but it's our method. When I was a little girl, if I was sick there was no tv until Mom was certain I was really sick. Given how often I was home sick (it wasn't often), it didn't take long for Mom to realize that I was truly sick. Once I began feeling a little bit better, I was allowed to lounge on the sofa for a bit, maybe watch TV, depending on if I felt well enough to do so.
1. Lots of fluids. Hydration is important and given that the average American is not properly hydrated, to begin with, I would be surprised if remember this one. So drink up when you are sick, water is always best, but juice, tea, something fizzy if you have a funny tummy, I think you get my point.
2. Jello. It sounds weird I know, but I add fruit juice into my Jello Knox Blox so they get calories and it's soft and easy on the throat.
3. Lots of rest. Even now, the girls are snuggled up on the sofa with blankets and pillows resting and reading for now. Depending on how they feel throughout the day, I may have them spend time on their school work.
4. Snuggles: Snuggles help make everything seem less bleak. In fact, it's often one of the orders I give, you need snuggles twice a day prescribed by Dr. Mom.
5. Doctor's visit: Depending on the severity of the illness a doctor's office visit may be in the cards. Two years ago Beka was dreadfully sick near her birthday and actually on her birthday. She even took naps snuggling with Chris or I and she was 8 years old at the time, so snuggles weren't usually something she enjoyed doing when she could run outside and play instead. She lay listless and lethargic, it was scary to see her that way. I am not especially fond of seeing Elizabeth sick either, but Beka is so rarely ill that is was especially scary.
6. Stay on top of medicine. If your child is sick enough to visit the doctor, the odds are good that they will tell you to give Tylenol and ibuprofen or some kind of medication. Stay on top of that medication - it eases your child's suffering AND it eases your suffering as well. I don't know about your child but mine tend to be whiny when they don't feel well so medication helps with a lot of things, but especially the whinies.
7. Be patient. This one sounds simple in practice, but in truth it is tough to be patient when you have things to get done and you can't leave the house because your child is sick. I usually can send Chris or he gives me a break so I can run to the store or do what I need to do to grab what we all need. But I admit even I get antsy if the girls are confined to the house for too long, but you want them to get better quickly, so be patients and rest with them.
8. Last but certainly not least. Pray. It is a privilege to pray for our children. Never is this more needed than when they are sick or facing challenges. Plus you can slip in a prayer for yourself as well if the illness is prolonged and let's be honest here, by the time our kids feel better we are just as ready as they are for them to feel better.
I hope you all have a good week.
Monday, September 18, 2017
I see you. I have felt your pain. And I want you to know you are not alone. All of us who are on this roller coaster ride with Autism have been at the beginning of the journey struggling to remain strong while wanting to fall apart. All of us heard those words, Autism or Autism Spectrum.
My journey started in 2006 when my daughter was four years old. Eleven years later she has come a long way. The child who could barely speak now talks non-stop. The girl who would bang her head when she was frustrated now can somewhat tell me what's going on, at the very least, she has found a less self-destructive way to express her frustration and angst. It won't always be an easy road, but it can come with amazing blessings. The first time your child talks to you when their therapy begins to do what it's designed to do if you are fortunate enough when your child hugs you. These seem so small to other families, but to us and those living with Autism, they are huge. So again let me share some of the lessons I learned as we live with an Autism Spectrum Disorder.
1. Some people will strive to be awesome and supportive - keep those people. Some people won't get it and more importantly they have zero desire to get it - walk away now while you can, it won't get better or easier and honestly, you will expend enough emotional energy advocating for your child so save that extra energy instead of wasting on people who won't be supportive of you. Some people won't get it, but they want to get it. You need to keep these people, give them a few extra measures of grace and mercy when they say something stupid because we are all human and we all say stupid stuff from time to time, Heaven knows I sure do.
2. A good team can be a huge asset. Speech therapy, occupational therapy, ABA, the list goes on, but all of these are designed to help you and your child grow and meet the challenges he or she faces daily.
3. It's okay to have bad days. First, you are not alone on having bad days. When we first began the journey with Elizabeth we had a lot of bad days. Change would set her off, sugar set her off, food coloring set her off, anything really could set her off. Some days she woke up and was all over the place, so I closed up the house, called her in to school, let her watch Veggie Tales until I thought I'd lose my mind if I heard the theme song again (and it's a catchy little song, but not 20 times in one day). Thankfully, because she had a great team, they understood that when she was off, she needed to stay someplace safe and familiar. School at that time was not that place. It became that place slowly though with great teachers and team members who helped Lizzie adjust.
4. You didn't do anything wrong. If you are like me, when you read this, it will take a while before it sinks in that really nothing we said, ate, drank or did caused our child to have Autism, it wasn't vaccines, because Autism is in the brain, all of those neural networks are working on overdrive, a vaccine did not cause that, something else did, but it wasn't you. I say this as the mom who beat herself up for a year because I felt as if I had failed my daughter in so many ways. I still occasionally struggle with those feelings, but really there isn't anything we did. It isn't our fault and it's okay to give yourself time to get your heart and head to catch up.
5. It is okay to mourn. In some ways a diagnosis, no matter if it is health related, developmental related, or mentally related means a death of our dreams. All parents have dreams for their children when they are born or expecting them (at least the parents I know did and do). You will dream again, but first, you have to let go of what you thought your journey would be with your child - that is like a death of sorts. It's normal to grieve, even be in denial, or struggle with acceptance and just as the cycle doesn't really end for those who lose a loved one, it doesn't really end for us either, it just shifts and changes as time goes on.
6. It's okay to be scared and uncertain of the future. It's also okay to research like crazy. Goodness knows I researched everything and anything. I even had a period of time where I shut down for a little bit. It was too much, and we had too many things happen in our family and I just couldn't keep on keeping on anymore.
7. Be patient with your spouse, they are grieving too and it is also hard for them. Men compartmentalize things more than women. Not all men, but a good chunk of them. So Chris didn't talk to me about his grief over Elizabeth's diagnosis and I didn't talk to him and then we came together and started talking and discovered we weren't alone. It helped a lot.
8. Be your child's advocate. If you can't do it, find someone who can help you learn how. You are the difference between your child falling through the cracks versus your child getting the services and the help they need.
9. Listen to your instincts. If your intuition says something isn't right at school, I find that unexpected visits help a lot. I am a big fan of dropping in unannounced. I have been fortunate to never find a problem, but not all parents have been so lucky.
10. Work with your child's team, not against them. This one is important, they need to know what is going on at home because if something is off at home, it makes for an off day at school. Keep them in the loop, talk to them. Let them know you are on their side. Being a parent of a child with special needs isn't easy, but neither is being a teacher and you don't have to constantly attend seminars or conferences and classes to keep your license to be a parent. Teachers do, so it's tough to do your job if parents are working against you. In our house we have a strict rule, if you get in trouble at school, you get in trouble at home.
11. Know when to fight and when to let something slide. Some battles will be big and need to be fought, like whether your child should join a self contained classroom or not - that is a big battle. Especially, if you feel that it isn't the best place for your child. Other battles are small, so let them slide, like clothing choices. Decide what is important to you and go from there.
12. It's okay to tell your child no. This one is tough because I think as we are adjusting to our new normal, it is easy to over indulge our children. Chris and I certainly fell into this trap after Lizzie was diagnosed, then once the shock began wearing off, we got back on track and insisted on better behavior. So if you have fallen into this trap, just know you aren't the first parent and you won't be the last parent to slide for a little while.
I hope this helps you as you start your journey. You can do this, it will be tough, but it doesn't mean the world is ending. It may feel that way for a while, but it isn't really, it's just going to take some time to grieve and adjust.
I hope you all have a good week.
Friday, September 15, 2017
I am thrilled right now. It is Friday evening, the mornings are wonderfully cool and I have a song to sing.
To a conga tune sing with me if you want.
I am wearing flannel
And it makes me happy.
(Repeat as often or not as you prefer)
I am loving this beautiful cool weather. I love how it smells. I love seeing leaves on the ground, I love it all. But this year I have even more reasons to love the cooler weather.
Since not everyone who reads my blog is my friend on Facebook. I will share on here. In early June I was lighting our grill and used too much lighter fluid, I also unwisely closed the lid to the grill and went to light the charcoal and whoosh, flames shot out. I lost my eyebrows, and some of my hair. I also sustained second degree burns on my lips, hands and arms. I am feeling better and stronger now, but as a result I must wear gloves for one to two years while my burns finish healing completely. Have you ever tried wearing gloves when it's hot outside? It is unpleasant to say the least. It is why we cancelled our trip to Vegas, gloves in arid dry hot climates are not fun and if I am truly being a stickler I should probably wear long sleeves, but I couldn't quite bring myself to do it during the warm season.
So now, I can lower my electric bill, wear the flannel I love so much, and sip hot tea inside and outside. It is marvelous! And then tonight I found a huge maple leaf that had turned yellow and was on our deck. It was a sweet sight and made my heart sing with joy. It made me equally happy to hear we may have another winter like last year. I would dearly love another winter with snow. I love how it looks when it's all freshly fallen and clean. I don't even mind when it's dirty (Nope, I am not a neat freak).
Enjoy your weekend and I will see you next week.