Quality of Life Week -- Day Four

I think when a parent finds out his or her unborn child has Trisomy 18, grieving occurs for a number of reasons. One, for the horror the statistics show. There is a no guarantee your child will be born alive. Two, that grief for the "normal" child you won't have.

I grieved in both ways. I think most parents are terrified of having a child with special needs. Autism, down syndrome, and the like--no parent wishes this on their child. I will admit it: I was terrified. But now that I have Lily, I can understand that joy that a child with special needs brings to those who love her. Had I not had Lily, it's a joy I would have never known. To me, that is special.

This video is of Lily right before bathtime. She LOVES getting a bath. She thinks that any time we take her clothes off, bathtime is near, for she gets so happy and excited.

Quality of Life -- Day Three

The love I have for my children is equal. Sometimes I wonder if they think that's true, but it is. I would step in front of a moving train just as quickly for one as I would the other. But here's something I don't think they'll understand and they might even think is unfair.

When Lily does something developmentally new, I feel this joy I've never felt with my other children.

That does not mean that I don't feel joy with my other children. I certainly do. It's just more intense with Lily. I think it's so intense because I've always had an expectation for Rani and Autumn and Gabriel. I expected them to smile and roll over and sit up by themselves and laugh and to have all those other appropriate developments at various stages of their lives. With Lily, I have no idea what to expect.

I rejoice when she smiles and rolls over and holds her head up. I can't get enough of her sweet laughter, even though it sometimes sounds like she can't decide whether she wants to laugh or cry. I have hope that one day she'll be able to walk in some sort of way. That hope lightly floats in my heart like a bubble on a soft wind.

Lily laughs. And my heart laughs and sings and rejoices with every laugh she makes. Enjoy, as I do.

Quality of Life Week -- Day Two

I learned that I was at high risk for having a baby with Trisomy 18 from a nurse at my doctor's office. I had never heard of this condition before. So I asked the girl what Trisomy 18 was. Oh, it means that your baby will be severely mentally retarded. I was shocked, but I kept imagining, based on this woman's definition, this child in a chair, incoherent to the world around him or her. At the time, I wondered what kind of life a child like that could have. I wondered if that was the kind of life my unborn child would have.

Then I went online and began looking. And I found children like Annabel and Zoe and Vera, to name a few. I heard from Sarah with her little girl, Alice. I began to realize that children with Trisomy 18 could have quite the life. No, it might not be easy, but these children could be happy, life-loving children. And my hope for Lily Grace, child with Trisomy 18, began.

Here is a video from later that day. If she's not sleeping or sucking her thumb and just chilling, this is how Lily is--playing with Gabriel, cooing, lifting her fat legs, rolling, and lifting her head. She has a blast doing this!

Quality of Life Week -- Day 1

Lately, I've been giving a lot of thought to the phrase "quality of life," and more specifically, how it relates to Trisomy 18. I have Google Alerts set to Trisomy 18, and any time I see a post, I also usually see "incompatible with life" and other alarming phrases and statistics that accompany this condition.

I know that there are doctors out there who immediately suggest termination upon seeing that their patient's baby has Trisomy 18. I understand their reasoning if they are protecting themselves, but what I don't understand is how those doctors can't see beyond the label.

Yes, I am very aware of the statistics. They have stared me down EVERY day since Lily's birth. I KNOW how fortunate we are that Lily has made it this far and that she is doing well considering. I also know that others aren't as fortunate, and my heart breaks for them day in and day out.

But the alarming phrases and statistics make it seem as if our babies can't have quality of life, and to that, I beg to differ. I think about Lily, our two little Annabels and Rebekah and Kaitlyn. Akaiya, Vera, Nolan, Alyssa, Mikayla. . .this list is bound to go on! These little rebels shake their fists at those statistics! And while I'm sure not every day is easy, these little ones smile when they hear What about quality of life?

So I'm creating for my blog a Quality of Life Week. I usually don't post a whole lot of videos, but this week, I'm posting videos that show Lily throughout the day, enjoying life to the fullest. I begin with a video of how she is first thing in the morning. Like her brother is and was when he was a baby, she is a bundle of joy and so happy. My heart beams to see her this way.

Therapy

Lily has come such a long way with her physical therapy. When we moved here in June, she wasn't doing too good of a job holding her head up when on the floor. She could roll, but she would only do it once or twice a day. She was not trying to stand. She was not holding her legs up at a ninety degree angle with her body. Now, she holds her head so high and gets her chest off of the floor, she is a roly poly, she loves standing, and she's always lifting her legs up. She has come a long way!

Three months ago, when Lily's PT did her evaluation, Lily was not able to bear weight on her legs while being held. She would just collapse. Some time along the way, she started to love standing while being held, so her PT decided about a month ago to put Lily against one of our chairs and see if she would lean against it and stand. Lily wouldn't do it.

Today, because Lily has improved so much with her standing time, the PT decided to try putting her against the chair again. This time, Lily did it! Then we got out the small ball that Lily stands against to practice her standing. Gabriel asked if he could hold her hand. The therapist let him. During this time, the therapist pulled Lily back a little so that she wouldn't rely on leaning on the ball. Gabriel continued to hold her hand. The therapist pulled her back a little more, so she was standing up straight.

So there they were, Lily and Gabriel, standing beside each other, holding hands. Lily was looking up at her brother, admiring him. I teared up.

Sometimes when we're in the grocery store and Gabriel is in a shopping cart that has room for two to sit in it, he'll say that one day Lily is going to sit beside him. I just keep on agreeing. It breaks my heart because I just don't know if she ever will or not. That doesn't keep us from trying to get her to that point--boy, do we try--but we're not guaranteed anything with this little one. So I was thinking about how Gabriel wants so badly for Lily to sit beside him in the shopping cart and how he's also said he and Lily are going to run beside each other some day. Seeing them standing beside each other like that today was as close as we've come (even though she was still being held up) to realizing that dream. I wish I had my camera close by. It was such a touching moment.

It's something we deal with every day when we're working with Lily to try and build her muscles. In our head, we know she may never have the muscle tone to walk on her own or even with a walker, but in our hearts. . .well, we just keep on believing that this little girl will one day move mountains. She's on her way! You just wait and see!

I have another prayer request. I got an email yesterday from Kristina. She is due on October 25, and her baby, Layne, has Trisomy 18. Layne has a VSD and her left kidney isn't emptying all the way. She is six weeks behind in her growth. Kristina is afraid that Layne will be here soon because both of her other children were early. If you will, please pray for Kristina and Layne and their family. Thank you.

Dear Givers

My dear givers,
Every month or so, we get a gift from you. We have no idea who you (all) are, but we are so grateful for your kind and giving spirit. We feel as if we don't thank you enough, but there are so many times I say a silent thank you. Moving to Charleston was not easy financially, even though now I think we're doing ok. But how many times have we needed diapers or gas or a date night or clothes, and the gifts you provided us with were there? Countless!

Today, an even bigger gift was given. It was the usual from one of our "friends," but the envelope had been ripped open at the very top of the envelope, as if someone had taken a knife right to the seam. Had it been ripped a fraction of a bit more, the cards could have fallen out. (I'm hoping you only sent three. . .that's what we usually get.) But they didn't! Even the prayer card was still in there, reading "God is my strength and power: and he maketh my way perfect" and "I can do everything through him who gives me strength." Is this a sign?!

So today, I send a thank you to you, my givers, but also to those who honestly handled our mail. How easy it could have been to take such a gift! I love it when I see evidence of good people in the world! Thank you!

On another note: There is a little girl out there, Lilly, who has Trisomy 18. She is in severe heart failure, but her parents have found someone to do surgery on her provided she gains enough weight. The little thing is at 4 lbs. 9 oz., yet the doctor wants her to be as close to 10 lbs for her surgery. They feel they are racing against time. With all the tests and hookups, her mother is wondering if she's chosen the right option. Please, please pray for this little girl and her family. While we never had to consider surgery for Lily, I can remember wondering if we chose the right life for her with our selfish love for her. Oh, what this mother must be going through! If you're interested, you can follow Lilly's story at http://pray4lilly.blogspot.com.

The Arms of Peace

Last night, I was lying in bed and this thought came to mind. It was a weird thought, and I have no idea where it came from.

I was thinking about science fiction/fantasy movies where the main character is walking through the woods, and all of a sudden, the trees come to life and one of them grabs the main character. He struggles, but the tree's grasp becomes stronger. Maybe the tree pulls him into the ground; its aim: to destroy.

Then my thought changed. What if, instead, the tree grabs the main character, but its aim is not to destroy. The main character doesn't know this, so he struggles. The tree's grasp becomes stronger, but only because all it knows is its purpose--still to pull him into the ground, but not to destroy. Instead, to share with him the connection that this tree has known all of its life. Its connection with the soil and the organisms, with what has lived and died. And in this connection, the main character would find peace. If only he knew. . .

I thought about it for a while. Then I took it a step further and related it to reality. What if that's how it is with God. Are we that blinded main character who struggles against all the bad that humanity has to offer, whether it be fear or anger or jealousy or worry? Are we fighting against God because life isn't going the way we define 'perfect'? Do we see Him as the tree trying to pull us under to destroy us? Or can we look past the struggle and instead find that our struggles connect us to that around us, with what has lived and died? Can we accept the peace that He is offering us beyond the struggle?

It isn't easy. I had an ultrasound the other day. This baby is weighing a little smaller than it should be. Only a week or so, and normally, that would be ok. But the fact that Lily has Trisomy 18 had them a little concerned. There are no markers that should give more concern, but when the sonographer was looking at the baby, we were talking about Lily and how she only showed the choroid plexus cysts and the missing digit in her pinkie. Those are the ones that scare me, she said, because you don't know. And they don't know. So we go back next month for another ultrasound to see how the baby is progressing weight wise.

I'd be lying if I said I wasn't a little worried. There are days when I stand in the shower and think about it in a worrying type of way. And every time, the song "Trust and Obey" comes to mind, and I hear this still small voice that says Trust me. Whatever happens is for my good. That puts me at peace. . .for the time being. So why can't I just go past the struggle and instead fall into the arms that don't want to pull me under as my struggle might suggest? These arms only want to offer me peace. Why can't I just accept that?

Frazzled

Is it sad that I was at such a frazzled point the other day that I took hope and energy from a VeggieTales song?

Lily got her 15 month shots last week. A few days after, she got a cold. Of course, we always worry with colds, so a lot of saline and nose sucks were under way. The little girl was miserable.

On Tuesday, Lily had an appointment with her new nephrologist. Our pediatrician sent her back to him, even though her next appointment with him wasn't until January, because Lily has had two urinary tract infections since June. He's considering putting her on a prophylactic antibiotic. Apparently, because Lily has the pelvic kidney and it sits lower than normal, UTI's just may become common. Hence, the need for always having an antibiotic in her system.

On Wednesday, Lily had an appointment with the pediatric surgeon to get her button changed to a bigger one. He wanted to wait until next month to change it out, but there had been a good bit of leakage that morning, so he replaced it--still with the same size button. We'll still change to the bigger size next month.

That afternoon, Lily vomited a little, probably because of the drainage from her cold. Then she spiked a fever of 102.4 that night and vomited as soon as I got her milk in her. While her fever was down the next morning, she was still vomiting.

The next morning, I made an appointment with the pediatrician and called pediatric surgery to see if this was common behavior that accompanied a g-tube replacement. It was not, so they told me to go to pediatric radiology after her pediatrician appointment and get a scan of the tube area done. The pediatrician could find nothing wrong with her, but prescribed an antibiotic mainly for what he deemed a sinus infection and then wrote a prescription for a chest x-ray (since we were already going to radiology) just to be sure no pneumonia had set in.

Three doctor's appointments in a row. Three times driving to downtown Charleston, which is at least a 30 minute drive. Three times interrupting the not-so-strict schedule of lunch and naptime for Gabriel, and if that isn't enough, making him sit in those sterile rooms, usually strapped in his stroller (unless there happens to be toys in the room for him to play with). I have to say he is such the trooper, though. Three times paying for parking that is not in our budget and humbling myself asking the doctors to sign a sheet for mileage reimbursement. It was more than I could handle that day.

When we got into the parking garage, Gabriel's VeggieTales CD was playing a song that we had sung at church camp, "Give me oil in my lamp." That song was a prayer in my heart. A plea, you might say. Especially the line, "Give me umption in my gumption help me function, function, function."

When we got to radiology, Lily was asleep. I was watching her sleep and noticed how labored her breathing looked. Fear set in. When they called me to check-in, the receptionist didn't know about her g-tube scan. She seemed to the point where she wasn't going to register us for that one, but she made a few calls. As she was making her calls, I was sitting there thinking, Woman, this is not my day to make a scene. If you don't let Lily get both of these procedures, you're going to hear about it. No, you're going to hear this little girl's LIFE story. And I kept thinking how I just didn't want conflict. I didn't want to be that crazy woman everyone stares at.

I don't like conflict.

I teared up and started crying. The lady at the desk asked me if I was ok. I nodded yes. Are you sure? Again, I nodded. Just overwhelmed? Yes, I nodded. So much for functioning.

Lily got both scans. And everything was ok from both. No pneumonia. No g-tube wrongly misplaced.

We came home and gave Lily pedialyte, which she kept down for the most part, and started the antibiotic. This morning, Lily woke up feeling so much better. The stuffiness is, for the most part, gone and she has kept everything down (even though I haven't given her milk yet). I'm not sure if the vomiting was a virus or just a reaction to the phlegm. I do know that every time she vomited, she either coughed or sneezed right before it happened. You'd think you could chalk it up to the sinuses, but she had a little diarrhea, too.

So many variables involved. Sinuses? Stomach virus? G tube? Trisomy 18 taking its toll? It's been a little bit of a scary situation not being able to pinpoint what's wrong with her, but it looks as if we're at the end of it. It feels good to know when you succeed in fighting a cold, especially when your child has Trisomy 18.