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.