Love is a Battlefield

I remember singing along every time I heard Pat Benatar on the radio. Love is a battlefield. The 80s mantra for complicated romantic situations. Little did I understand how much it applies to loving your children.

My Battlefields

I've been fighting battles for my kids for 18 years. I feel like I live on the battlefield.

My oldest had autistic-like symptoms but not enough to get services or a solid diagnosis, so I fought and fought. I was once told by an “expert” that his symptoms were just a self-fulfilling prophecy. Like I wanted him to be autistic if he wasn't? Ugh. 15 years and genetic testing later, I would love to see this “expert” again and have her see the proof of a microdeletion known to cause autistic traits. Oh, and now he's in college with a 4.0.

My middle child….we were warned he might never talk. He had intensive ABA therapy for so many years.  We fought for that too. And now? Yeah, he's a chatterbox. He skipped a grade and is an all-around genius.

And my youngest. My pulmonary hypertension miracle. That was the hardest battlefield. You can't die from autism. If you have to fight for speech or OT, there is time to make it up. Fighting insurance over medicine? That is brutal. The day my husband was laid off in 2014, I collapsed to ground crying. Not over income or a job. Over insurance. The drug she needed was $10,000 a month. How was she going to live?

I didn't know, but God knew. He knew He was going to heal her. He knew she would get off that pump and that medicine. He knew.

In fact, He knows all our battles. He not only fights along side of us but ahead of us.

“The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” Deuteronomy 31:8 NIV

And this is true of all us parents. There's nothing special about me because I have 3 extraordinary kids with special needs. All parents go through battlefields. And God is with each of us every step of the way.

Slow to Anger

"My dear brothers and sisters, take note of this: Everyone should be quick to listen, slow to speak and slow to become angry, because human anger does not produce the righteousness that God desires. Therefore, get rid of all moral filth and the evil that is so prevalent and humbly accept the word planted in you, which can save you." (James 1:19-21)

Yeah....slow to anger....kinda missed the mark on that one today. 

It has been a day, a week, a month, and a lifetime! Between job issues and a raging heat, I have felt stressed and stretched to my limit. What made it worse was knowing that we would be changing Samantha's site tonight.

It has been a whopping 8 weeks since her last site change. I am thrilled it lasted that long, but it is the max we can keep one in and not increase the chance of infection. So, tonight was a planned site change. And, like most things that we plan...

Samantha is getting older and these site changes are getting harder. She is stronger (a good thing, yes, but not when you need to stick a needle in her arm) and she is more aware. 

After it was done, I looked at her and told her I loved her. She looked at me and said, "No!" We hugged. We cried. Through snot-filled tears, I told her I loved her over and over again. She collapsed into my arms, whimpering. Just before she started to fall asleep, I heard her sobbing voice, "I...love...you."

We rocked and rocked. Eventually, Daddy had a turn at it, and my sweet girl succumbed to her slumber.

I was left feeling angry. Angry at PH. And even a little angry at God. I hate this! Hate is not even a strong enough word for what I feel. The purple plastic device below causes so much anger in me and fear in Samantha.

Inside lurks a long needle and a stiff catheter that is pushed into the tissue on the back of her arm. Yeah, back of her arm. That area is sensitive enough. After the catheter is inserted, you are left with this:

It looks harmless enough, but underneath she is in pain. Why am I showing these pictures? Because I am angry. Because I need to put pictures to the words. Because....

Because I need to remember that, "human anger does not produce the righteousness that God desires." Oh. Yeah.

Morning will come, and my sweet baby girl will be running down the hallway with some toy she stole from her brother. She will hug me good morning. She will grab her arm throughout the day in pain, but she will trudge on. And my anger will fade. It will be replaced with joy and love. 

To Perservere

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete, not lacking anything.” (James 1:2-4)

Sometimes, I feel so impatient.

In June, we received the happy news that we might be able to wean our daughter off the pump she wears. Her last heart catheterization looked like she never had PH! They want to repeat the catheterization in December or January and, if all looks well, transition her to an oral medicine.

All of this is great news, but I want it now! I live in the world of convenience stores, fast food, and instant oatmeal. I grew up force fed the expectation that “I can get what I want when I want it.”

Not true.

Patience is more than a virtue held by picturesque Disney princesses; it is a trait parents must possess. That newborn does not turn into a toddler overnight (though, looking back, it might feel that way). There is a slow process of learning new skills, new words, and new boundaries. Then comes the testing of said skills, words, and boundaries! Oh, joy!

The problem for me is that I just want to be done:

• Done poking my child. 
• Done making medicine. 
• Done giving her sponge baths. 
• Done telling her no pools and water play. 
• Done watching for site reactions. 
• Done with not being able to hug her and feel her back without tubing or tape.  
• Done ordering a myriad of medical supplies with strange names (Duo Derm, Coban, vial access adapter). 
• Done sewing pockets on all her clothes. 
• Done explaining to strangers that it is not a cell phone pocket and the tubing is not a tag I left on. 
• Done, done, done!

Okay....toddler tantrum over.

Samantha doesn’t remember a time without the pump. It is just part of her. She will ask for help when the pump falls out of the pocket. She invented a game where she bends really far over, makes the pump fall out, and then makes us chase her to put it in (we call it Turkey…don’t ask). She doesn’t know that she might be weaning off. She doesn’t know that I plan on buying every bath toy available when that day comes. She doesn’t know that other children don’t have to go through all this.

She has accepted her circumstance and has not let it get her down! She has perseverance!

I need to be like that.

“The end of a matter is better than its beginning,
    and patience is better than pride.” (Ecclesiastes 7:8)

Trials Aplenty

"Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance."  (James 1:2-3)

No one could ever say our life is boring. There definitely was an interesting twist to things today.

Ever since I was pregnant with Samantha we have participated in a study from the UC Davis MIND Institute regarding autism. It has been a very thorough study (they were even at the birth to get her umbilical cord).

Today was her 24-month testing. I expected nothing unusual and we planned for my husband to take the boys around Sacramento while Samantha and me "played" at the MIND Institute.

Ever since her hospital stays, Samantha has been wary of hospitals and doctors. Once she saw the exam room, I could that tell that she decided to be difficult. She refused to answer questions that I knew she knew and was distracted by the foot pedal that ran the sink.

The results? A provisional diagnosis of autism. Yep, autism. All three kids. Autism.

They said that they saw possible signs of autism and that she was one criteria short of a diagnosis...hence the "provisional" part.

We are dumbfounded. But not crushed. You see, autism can't kill her. No, PH is the one that wants to do that.

We don't really think she is autistic, but they would like her to receive early intervention services "just to be on the safe side." I get it. I kinda agree. I just wish this was the worst news we would ever hear about her.

Honestly, I felt very little when they told me. You see, once you've been told your daughter has a disease that will probably kill her, well, most other news just pales in comparison.

What the heck. We'll get her services. We'll go back to the MIND Institute when she is 3 to have her reevaluated. We'll deal with it.

I just don't feel the same way about this diagnosis as I did with the boys. I don't think I ever can. Probably, partly, because I believe they are way, way off base. But also because autism can't destroy me anymore. It doesn't bring me to my knees.

Autism is not the scary boogeyman. Autism does not kill. Autism does not take your child away. Autism is something I can work with. I can feel useful with autism. I can make charts and laminate icons. With PH....I'm on the sidelines, wringing my hands and pacing. I'm praying for a cure when no one is even close to one.

Autism is something I know. PH is something I hate.

But, I still felt a little punched in the gut after the evaluation. There has just been one blow after another coming our way. I feel like once we start to recover from something (layoff, extended family drama, insurance issues, etc) then something else comes and knocks us down again.

But, with Christ, we will get up again and fight. We will fight for our children. We will fight for our lives. We will fight PH.

So, bring on the trials! We got everything we need!

My God, My God

"My God, my God, why have you forsaken me? Why are you so far from saving me, so far from my cries of anguish? My God, I cry out by day, but you do not answer, by night, but I find no rest." (Psalm 22:1-2)

I'm right there with David, asking WHY!!

Last night was a rough night. Samantha's site looked ready to be changed, so we embarked on the dreaded, but necessary, task of putting in a new site.  Except we didn't.

See, when dealing with adhesives, needles, fancy inserters and such, there it's bound to be a dud. In our case, there were two.

Samantha uses a Cleo site. It is inserted using something that looks like an ink stamp. You grab her arm, find a place for the site, put the device on her skin, and press down. A needle inserts the catheter and the needle is drawn safely back into the device. The next task is taking the device off and leaving behind the site and surrounding adhesive. Here is a detailed step-by-step guide, if you want to understand it better.

Yet, last night, the adhesive would not stick. I tried another one. Same problem. I refused to try a third. We've poked her as many as four times in the past before one stuck and I didn't want to put her through that.

The whole time this is happening, Samantha is screaming. She is wailing. She even said: "I don't wanna site."

Heart. Broken.

You know that parental ownership we claim to have when our kids do well (like we had anything directly to do with their first steps!)? Well, it cuts both ways. You also feel the guilt for the bad things that happen to your children that are out of your control.

I was up all night feeling incredible horrible that I had to hurt her and nothing was accomplished. I'm praying her current site holds on a little longer. I'm worried if her arm will heal enough by then to go through another poke., I'm praying the adhesive will work. I'm racking my brain for ways to make it work. I'm hearing her cries echo in my mind....

I'm hating PH. I'm hating that she will probably need a site change right around her birthday next week. I'm hating that not long after her birthday is the anniversary of her diagnosis.

In the PH community this is a big deal. It marks another year of triumph over the disease. For me, it marks the day my world changed forever. The day I had to accept the hardest truth any parent could hear. The day when needles became commonplace in my home. The day when PH invaded every inch of us. The day I got angry at God.

Like David, I have often asked why God would allow this to happen. Why has He forsaken us? Where is He?

I know He is still there, but I'm human and I get angry. I get frustrated. I get depressed. Really depressed.

I wonder if I'm actually doing anything to help my daughter. I'm wondering why so much had been thrown at us lately.

I just want a break, some rest in my soul. I think David says it best later in Psalm 22:

"For he has not despised or scorned the suffering of the afflicted one; he has not hidden his face from him but has listened to his cry for help" (Psalm 22:24)

"The poor will eat and be satisfied; those who seek the Lord will praise him---may your hearts live forever!" (Psalm 22:26)

Christmas Memories: The Good, The Bad, and the Ugly

"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12

Last Christmas was a blur. The day before Christmas vacation for the boys, we noticed that Samantha was breathing hard. We took her to the first of what would be many doctor appointments. Over the course of the next few weeks, we were told she had pneumonia, might have a rare lung disease, might have leukemia, and then back to pneumonia. Test after test was run. Antibiotics and steroids were given with no effect.

I felt this sick pit in my stomach that there was something else, something they were all missing…

The day before Christmas, Samantha had a doctors appointment. The day after Christmas she had to get a chest x-ray and blood draw. We really didn’t have high hopes for Christmas day itself.

Turned out, Samantha was miserable all Christmas day. She couldn’t breathe. She didn’t have much strength and cried almost the entire day. Most of the pictures from her “First Christmas” suck. We put her pretty Christmas dress on, but we couldn’t make it to church service. She was too sick.

We didn’t know about Pulmonary Hypertension last Christmas. We didn’t know the name of the devil we were up against. We just knew that something was draining the life from our baby girl. Something was killing her…

I am so grateful that January came. I am so grateful that the bureaucratic insurance companies and doctors moved so quickly. By the end of January, Samantha was diagnosed with PH, hospitalized, and put on her medicine.

This Christmas feels so very different. We have had a difficult year and it was capped off by my husband being laid off from a position he held for 14 years. Yet, Christmas feels more joyful and hopeful than ever before.

As we near December 25, my mind wanders back to a year ago. I watch my beautiful little girl twirl around her room, holding her new baby doll, and I see the difference a year has made. The right diagnosis, the right medicine, the right doctors—they have all made a difference. I thank God he led us in the right direction and gave us the wisdom and strength we needed.

While I am still faced with the fact that my daughter may not live very long, I know that she is living a better life than she was a year ago. I cherish every moment with her. Every laugh. Every cry. Every delightful second.

I know that this Christmas will be one million times better than last year. Samantha has a new Christmas dress this year and I know she will love wearing it (she’s become a bit of a fashionista). And we have discovered that Samantha loves Christmas music and is amazed at the lights and decorations.

Merry Christmas, everyone. May God bless you with love, joy, and happiness. I know He has for us.

It's Not Just About Brownies

Children, obey your parents in the Lord, for this is right. “Honor your father and mother”---which is the first commandment with a promise---“so that it may go well with you and that you may enjoy long life on the earth.” Fathers, do not exasperate your children; instead, bring them up in the training and instruction of the Lord. - Ephesians 6:1-4

This is a hard one for us when it comes to Samantha. We know children need boundaries and discipline to learn about the consequences for their actions. We teach our boys this...but Samantha?

She's the baby. She's the girl. She's (gulp) sick.

Yet, she also disobeys, has tantrums, can be very sneaky and even a little naughty.

Back in January, when she was in the hospital and we found out about her diagnosis, we decided that we would treat her the same as the boys, including discipline.

Of course, deciding something and acting on it are two very different things.

And it didn't become a real issue until lately when she decided she was going to explore the "terrible twos" a little early. She has begun to enjoy the toddler game of throwing food on the ground. Fun times!

Today, she threw a brownie on the floor and made a mess. She just started to walk away drinking her juice. It dawned on me that we can't let this snowball. I took her juice away and told her that she needed to clean up the brownie before she could have the juice. She protested. She threw herself on the ground. I thought, "this is so not going to work." But I repeated to her, "if you want your juice, then you need to clean up the brownie." She sat up and said, "o-kay." She cleaned up and I gave her back the juice.

Success! She can do this and so can we. She needs this guidance from us to learn right from wrong. It's our job as parents to teach her this regardless of how long we have with her.