Wednesday, November 4, 2015


I changed the background on my blog because I didn't feel the ribbons I had cut it anymore. I feel like my life is a storm. We have lots of noise, darkness, and scary moments, but God is still the master over the storm and over my life. He helps me through every moment and he shows me his mercy even though he has placed me in a storm instead of a meadow. In Him I have peace in the storm.

Friday, October 30, 2015

Our Perspective

I was lying in bed last night using the baby monitor to listen to Ilse talking. Her babbling is so precious, and without thinking, I told Tim, "I love her so much. Just think of what we would have missed if she'd been normal."

And then I heard myself. Wow, that's one of the things you never expect to say or hear, kind of like, "Please pass me that piano."

But it's how I really feel, and Tim agreed. We did go through a time period where we grieved for all the things Ilse wouldn't do: the dating, the wedding, the grandkids, the singing at family gatherings, the piano playing, communicating with ease like all her aunts, etc..

I feel though, that the blessings outweigh the pain and trouble. Ilse is the sweetest little girl, almost always smiling and babbling. She cuddles and she really might not ever grow out of loving it. She plays peek-a-boo so sweetly with her animals. She's so lovely and pure (not sinless but she has way less opportunity and inclination to sin than the rest of us, so it's just kind of a breath of fresh air if you know what I mean.) There's no way my sleep deprived brain can enumerate all the precious things Ilse introduces us to with her loving spirit.  She displays such a good attitude even though she hurts. She'll be my friend and stay with me as long as she and I live.

Just think of what we would have missed if she'd been normal.

Tuesday, October 20, 2015

Faith and What's Better

You've all seen the meme that says "Faith is not believing that God can, it's knowing that he will."

I have a problem with this saying. It's just not true. It's a big lie. It's pretty and encouraging. And I guess it makes people feel good, right up until


God doesn't.

He doesn't heal the disease. He doesn't cause the baby to be born healthy and strong. He doesn't provide food for dinner. He doesn't keep people from being robbed or shot or raped or murdered.

Sometimes God just doesn't.

My mother-in-law was told she didn't have enough faith and that's why her son still had cerebral palsy. God didn't heal him.

My daughter has Smith-Lemli-Opitz Syndrome, and surely many people prayed she'd be healthy, but she isn't. God didn't make her SLOS free.

Is it faithless to admit it? That sometimes God doesn't?


God defines faith as "Now faith is the assurance of things hoped for, the conviction of things not seen."  That's Hebrews 11:1 in the ESV.  The Living Bible breaks it down a bit: "What is faith? It is the confident assurance that something we want is going to happen. It is the certainty that what we hope for is waiting for us, even though we cannot see it up ahead."

Considering that everything we want doesn't happen though, as I pointed out above, what could this verse possibly mean? 

Sometimes when God doesn't give us what we ask for, he is giving us something else. But is it in line with another meme that says something like, "When God says no to what you want, he's preparing something better."  

That's equally as cliche and pretty as the first meme, but it's also inaccurate as far as what it's intimating.  It sounds like God's only going to prepare better things for us on earth, as in, "I didn't make the baseball team but that's ok, God's obviously got something better, and so he's going to let me be captain of the hockey team!" But in reality, you might never get to play sports again because you broke your leg on the way home, then you forgot to take your antibiotics, and your leg had to be amputated. Because sometimes God doesn't.

What we can be confident in is this:

God is preparing us to partake in his Glory. We will be part of bringing him glory and even if it hurts here on this earth or brings us unending sorrow, our reward in Heaven will be utter and perfect holiness. No pain, no tears.  Only joy, peace, love, and glory.

When God doesn't or when he's not preparing something we think is better with our earthly eyes, we must remember that God WILL prepare something that is BETTER according to his plan, his holy and perfect plan.

Our eyes must be on Jesus because only then will we realize that God WILL save us and use us for his glory, and that God is preparing the BEST for us, a life that can be spent serving him on earth and then worshiping him for eternity.

Thursday, October 15, 2015

It's Ok

This is for all my fellow special needs moms.

Lately I've been having a lot of bad days. Some days I don't want to get out of bed. Some days I avoid therapy because I don't want to see anyone and I feel like it hasn't accomplished everything I wish it had anyway. Some days I wish I drank. Some days I wish I had a maid and a bigger house with room to store all these medical supplies. Some days I wish everyone knew my heart and knew how I felt without me having to explain it. Some days I wish people knew what to say to me. Some days I wish I had a normal family. Some days I wish normal weren't a dirty word in the special needs community. Some days I wish my daughter didn't need a wheelchair. Some days I wish my son didn't have mental health issues. Some days I wish my other son were emotionally stable. Some days I wish my husband didn't have cerebral palsy.

And it's ok. It's ok for me to feel these things. Feeling these things doesn't mean I am unhappy or that I hate my life. It doesn't mean I'm not thankful.

I love my life.

I'm SO thankful.

God answered my prayers for a husband and children, a home, and everything we need to fill it.

We have all the material things we need.

But emotionally... some days I wish I had a normal life. A husband who could drive himself to work and who didn't have to struggle getting everything done. Sons who didn't have multiple homes before coming to us. A daughter who could walk.

I'm weary.

And it's ok.

A special needs mom never rests. The joke is that even regular moms don't rest, but regular moms have no idea what no rest is really like.

There is no rest emotionally or mentally, whatever my physical body may be doing. There is always something to be considered, prayed over, or planned for.

A special needs mom's life is a process. Whatever order an sn mom experiences them, she will probably have all these feelings or needs: guilt, exhaustion, tears, fear, denial, searching, endless searching, giving up, taking a break, loneliness, personal health concerns, going off the beaten path for treatment, feeling ostracized from friends, feeling ostracized from special needs friends because you are different from them or you use different treatment styles from them, and no doubt there are so many other things that could go on this list.

And it's ok.

It's hard, but it's ok.

And it's beautiful. My life is beautiful. My daughter is beautiful in her wheelchair and my son's smile is beautiful when he tells me how he is feeling.

That beauty is a gift from God. He knew that my life has many sides. I'm the wife, the mom, the special needs advocate, the organizer, the administrator, the encourager. I don't think this list ever ends. He knows the demands on my emotions, on my time, on my heart, on my mouth, on my brain. He gave me the beauty to balance the pain, but he didn't take away the pain and the struggle, and I feel it, and it hurts.

And it's ok.

I know people wonder what to say to me. Just say 'I'm sorry' and 'I'll pray for you.' Tell me you'll pray Tim's brain will work better and that Ilse will learn to walk. Tell me you'll pray I can rest. Ask me what I need and then bring it.

Come visit me. I know people are busy but special needs moms need visitors because it encourages us when people sit with us. When my son tried to kill himself, I asked my mom if she would just come sit with me, and her doing that was what helped me feel better.

Don't assume struggle means quitting or being angry at God or hating one's life. Don't put special needs moms under the pressure of having to act like everything is easy or going well.  Everyone has struggles and I've never seen any life where everything is perfect, and I'm standing up and saying it.

Life is hard but beautiful. Sometimes I can only see the hard.

And it's ok.

Thursday, September 17, 2015

Being a Caregiver

I'm a caregiver. It's a specific role/title I was just made aware of but one I've held for a long time.

I'm going to be exploring the role of caregiver because while it may seem like a simple thing

"Hey, I take care of people!"

let me tell you, it isn't.

Caregiving is a full time job and it involves all my energy, will power, imagination, and thought. Caregiving is a rewarding life, but it is the hardest thing I've ever done.

As I said, I've always been a caregiver. From scratching the boy who insulted my sister's name to making sure my college age sister charged her cell phone every night and took it with her every day, to clearing a path to each door so my family could escape the house in case of a fire... those were just when I was a child and teenager.

Now as an adult, I'm a caregiver to a husband and two special needs kids. My husband might react to the statement that I'm his caregiver, but it's true.  I take care of him like no one else can. I support him emotionally, physically (he has cerebral palsy), mentally, and I drive him places. Supporting a husband who deals with depression and anxiety is hard work.

I'm also the caregiver to a son with mental health issues and brain damage. He is in 3rd grade and is close to being a fluent reader. I hope. He hid a knife in his bathroom the other day to protect himself from bad guys. He worries about everything. It's a lot of work to keep him safe and to stay ahead of his mental needs.

I'm also the caregiver to Ilse, our four year old daughter with Smith-Lemli-Opitz. She requires total care- diapering, tube feeding, dressing, everything. She might always require total care.

As I consider what the role of caregiver means for me, I'm also going to be considering how best to take care of myself, too. I grew up thinking the caregiver had to work constantly and never take 'me time'. I don't know who made me think that but it's not correct. If the caregiver does not have respite, she will wither up and will not be able to take care of anyway. Even Jesus took time away.

These are just my beginning thoughts.
Stay tuned.

Thursday, August 13, 2015


Tomorrow my Chris is getting his tonsils out and new ear tubes put in, and a sinus endoscopy, why the endoscopy I don't know.  He is nervous and I am nervous.  He's nervous because he's a child, and I am nervous because I am not a child, and I know that I'm going to have to be the one to deal with getting him calmed down when he wakes up.  When he got his adenoids out he was combative upon waking up; the anesthesiologist thinks it was because of the Versed.  So tomorrow we are doing no Versed, which means he will be awake and sober as he goes back to the OR sans his mom.  I'm hoping he will keep it together.  Chris has great self control, but he is still only 8 and he can be pretty agitated when he is afraid.

I'm hoping they let us stay long enough after he wakes up for me to feel safe driving home with him. After Joey's endoscopy we left so fast that I almost had to pull over on the way home to let Joey wake up more since he was all over the place in his seat.  This is a different locale, so hopefully we'll have better luck.  There's that fine line between leaving too early and being forced to stay in recovery way too long.  Hopefully we can walk that line perfectly tomorrow.  The last thing I'd like to do is hang around for an hour or more in recovery when both Chris and I would rather recover at home.

And I'm doing tomorrow without Starbucks.  It's been a month probably since I broke my Starbucks habit.  God broke it really, of course, but I'm still giving myself a big pat on the back because I know what a major accomplishment it was.  :)

Saturday, August 8, 2015


Today we went to Best Buy and got Ilse her new talker.  It's name is 'Talkie' and it's a dedicated-to-Ilse item.  I'm excited about it.  I've got her apps on it and I reconfigured her Speak 4 Yourself so that she has more words to explore.

Sadly, the available voices sound older than Ilse, and they aren't VERY loud.  But that is just something we are going to have to deal with.

Now Tim and I need to get into the habit of modeling and helping her talk with Talkie.

I also need to remember to take it everywhere Ilse goes.  We all take our voices with us, so Ilse should get to, too.