Today I am asking you to set aside a few minutes to pray…hard.
I have this “friend”—here in the internet world. Her name is Anissa. She lives in Atlanta with her husband and three kiddos. Her little girl just conquered leukemia.
I’ve never met her; however, she never fails to brighten my day. She has quick wit, mixed with sarcasm—but it’s all surrounded by love. The kind of love you don’t get just by being a nice person. I’m talking about the genuine, heartfelt love that comes from being a person of great compassion and understanding. She just gets it.
Yesterday, this young momma had a major stroke. She has bleeding on the brain stem and is in ICU. Could you stop for a minute and pray? I woke several times in the night aching for her, her children, her husband….
Her favorite verse (as well as mine)…
Be Joyful in Hope, Patient in Affliction, Faithful in Prayer (Romans 12:12)
This whole sleep apnea thing is getting old. I was so much better not knowing…Now, I stare at him wondering when he’s going to stop breathing. When I do think he’s stopped breathing, I touch him, which makes him mad, and he’s then awake with me, which isn’t good (do you see where I’m going with this? Probably not, because I’m incoherent and surviving on coffee and coca cola!)…
Yesterday, he went to see Dr. Ear with Janson. She is OK. Her surgical site hasn’t quite healed properly, so she’s on another month of antibiotics. Jack is having surgery next week. I guess they don’t like to mess with apnea, because he wanted it done as soon as humanly possible (Humanly possible in medicine is usually measured in weeks. Jack, however, appears to be a special case: he gets admitted. Dr. Ear evidently doesn’t trust Jack’s wimpy lungs, so he’s admitting him for 24 hours of observation after the surgery).
I called upon the Schmoopie and the Calvary. The Schmoopie is my oldest and dearest friend–and I really do call her Schmoopie! She has a real name, but I won’t share that, because it’s more fun to call her Schmoopie. Well, Schmoopie has a husband who has to be out of town, so she can’t come to help with the surgery. So, then I called the Calvary (um, my sister in law and nieces…)who are overjoyed (sarcasm?) to drive up here for the third time in a month…it’s times like this where I wish we lived closer to family.
In the midst of all this, someone has thrown down the gauntlet regarding my family. This person has basically spit in our faces. And you know, I try to be really strong. Yet, when someone messes with my kids, I’m the stinking Yeti. I get this Superhuman strength that comes from heaven, I suppose! I just don’t get it. Adoption is such a blessing, and has made us such different people, and I guess there are some that don’t accept the fact that our family is not simply the blood that courses through our veins. And you know what, You Know Who, we win.
I know I have no right complaining. There are so many worse things in the world. Two such things are heavy on my heart right now, so I am going to ask you to send your good thoughts and prayers to 2 people who are really special to me. One is the mother of my other Orlando BFF: she got some unpleasant medical news and is dealing with the fallout. Secondly, is for the mother of my OLD (ha…laugh…) high school boyfriend. She is very, very ill, and the whole situation brings me to literal tears. I know that the Lord has plans, and they are in His time, but sometimes His timing throws me for a loop.
THE LOUDEST EXPLOSION YOU’LL NEVER HEARAll of life is a near-death experience. It is precious, but fragile — laughing happily one second on the way to the football game on Friday night, . . . silent the next second under a crush of steel.We think we know what life is: It is the beauty of a sunrise. (Then we meet a joyful blind person.) It’s the sound of a gentle waterfall in the wilderness. (Then we meet a vibrant deaf person.) It’s Tiger Woods hitting a golf ball. (Then we meet a quadriplegic who loves life more than anyone we’ve ever known.) It’s watching this, and listening to that, talking with friends, and a thousand other things. (Then we learn about Helen Keller.)Life is paradoxical. But like any near-death experience, it is also scary. So we hide from it. Which makes it even harder to understand. Life’s not in the hurricane — it’s in the whisper. The breath of air . . . that knocks us down. The earthquake that rocks our world, but doesn’t quench a smoldering wick.“Whoever loses his life for My sake will find it.” Matthew 16:25. So . . . “losing” life . . . that’s what “saves” it? How can that be? Answer: Sacrifice is what makes SENSE of life. “Greater love has no one than this, that one lay down his life for his friends.” John 15:13. Love without sacrifice isn’t really love.The adoptive parents I help are willing to love to the point of sacrifice. In choosing adoption, they choose life. And they choose sacrifice. Like Heather and Sebastian (their story has already been in the newspaper). Heather and Sebastian adopted Jack.Storybook adoption? Pastel colors, lullabies and baby powder? No. Jack came from a . . . well, a “rural” area. When they went to get Jack, they probably should have taken a gun. People there had probably never seen so many teeth in one head.Once home, they got Jack’s adoption finalized in court. The female judge loved Jack. Carried him around for pictures.“Happily ever after”? Not so fast. Life isn’t life until the sting of death is removed. True love sacrifices. Jack was diagnosed with cerebral palsy just a few weeks after the adoption was final. Think about that:Adoption. Final. Cerebral. Palsy.Is THAT the end of the story? No. Heather and Sebastian love Jack. They love Jack WITH his cerebral palsy.Can I tell you what loving cerebral palsy is like? The hurricane of cerebral palsy shows you that life is in the whisper. Life isn’t talking clearly; it’s “elopu” — a phrase that only a parent knows means “I love you.” It isn’t running and jumping; it’s feeble steps, leaning on a parent’s support. It isn’t Baby Einstein; it’s tearfully hugging a parent when nothing else makes sense. It isn’t addition and subtraction; it’s what’s left after death is subtracted. It’s the rock of redemption that remains after the earthquake passes.Love God, my friends, by loving His creations — especially a creation who needs your love so badly you can taste it. That, my friends, is sublime. Loving that whisper is the loudest explosion you’ll never hear.In a recent e-mail, Heather she said they wanted to adopt again. A group of siblings. This is how “the Lord’s work” gets done.Let’s all roll up our sleeves.Birney BullI think, by far, this is the nicest thing anyone has ever written…and, it happens to be TRUE!
What a crazy week we’ve had! Our church decided to help us out and have a dinner for Jack. So for the past week or so, I’ve been helping out and making lollipops with Jack’s face on it to put in each dinner. Well, they originally told us that they were going to try to sell 300 plates! Well, God is God, and He thought that wasn’t good enough….they ended up selling over 750 dinners!!! We tried to visit as many businesses as we could, and I tried to take lots of pictures, but we were so busy, I feel like I didn’t get everything accomplished that I wanted to. But it was a huge blessing!
In this same time frame, a girl called me and said she wanted to help Jack out too. She was going to be putting out a gospel CD (her family goes to our church, that’s how she found out about us) and wanted to bless Jack with part of the proceeds from the CD. So we went to her concert on Saturday night—it was wonderful! It’s so nice to know that so many people—even ones we don’t know—are thinking about Jack and praying for us. It helps more than anything else!
Sunday was Mother’s Day (Happy Belated to you!)…it was great! Janson helped Sebi make me breakfast! Then we went to church (Jack made quite a scene there, so I spent most of the service in the women’s bathroom with him!)! After church, we had lunch with Alissa and her sister and the kids…then played games! I couldn’t have asked for a better day!
Yesterday we had therapy. It didn’t go so well. Jack bit Wendy the Wonderful. It was awful….I was torn between wishing the ground would open up and eat me, and crying! So pretty much the rest of the session we spent talking about Jack and the things that are going on…and how things aren’t going as well as expected. It was very discouraging. Sometimes I feel like I just can’t win….but then I get better, so I guess it’s normal. Pictures…Jack and me with the big cooker thing, Alissa and me wrapping ribs, and Jack and his “thank you” t-shirt.
This one is going to be really quick, because J is on spring break and that means I have NO time to myself! Not that I really did before, but she’s being extremely needy for some reason…SO, yesterday Jack had his orthopedic appointment. It sort of went well! The doc said his hips aren’t any better really, but that the problem is not with the bone, it’s with his muscle tone. He wrote a prescription for braces for overnight that will try to help with the problem…and we go back in 2 months. We had to have X-rays done and when we went into the radiology room, Jack started signing “eat, more, please”—he seemed to think that it was time for a swallow study! That’s my boy, Lover of Barium! We also had our first OT appt with Wendy the Wonderful at her new office. He did awesome! He was so happy…and he was the only kid there, so there weren’t so many distractions for him! I was so proud of him! I need to get some pictures on here, but the camera is in the diaper bag, which is somewhere in the disaster, formerly known as my car. Keep us in your prayers this week. We have some family/personal stuff going on that could use a little push to God’s hands. It’s good stuff, but we could use a push. And I promise to spill the beans as soon as I can.
Today was a very interesting day. We had therapy, as usual, and Jack did fairly well. He was really happy to spend the day with Jenny the Great! He even tolerated the treadmill much more than usual…but we were practically alone–there were hardly any other kids there today! He is easily distracted…Then we had to tear home, because the BCW lady(the new one) was coming for her visit. She was so nice! She said Jack had gotten so big (well, considering he was 6 months old the last time she saw him….). So, we were asking her a few questions and she was giving us a few answers (seriously, they aren’t rocket scientists and they really don’t do much except push your paperwork into the right hands). .. but she kept telling us that Jack should talk more. We told her he knows 20 words in sign language that he uses a lot…and she said we should force him to talk. I don’t think she totally understands Jack…Anyway, she set up a meeting with us for next month. Because he’ll turn 2 this year (hard to believe isn’t it?), they put him into “transition”, so that when he’s 3 they can ship him off to school. So, sometime in the next little bit, a teacher will start coming to our house for an hour a week and she’ll play with Jack. I wasn’t quite sure how to take this…First, I thought maybe this would be really great—then I started thinking—well, what the heck do they think I do all day? And she wouldn’t tell me if the teacher would be also certified in ASL so she could teach him to sign his answers back to her. Clearly, if the kid isn’t saying anything, he won’t be able to tell her that the “ball is red”. But he can sure tell us that now in sign! OK, so he doesn’t know his colors, but he can say ball, chicken, bird, elephant(very important), mom, dad, farm, horse, more, please….and I am thrilled with that. I think I’ll stop there, because the whole thing just makes me mad. OK, I changed my mind. So why is it that just because he can hear, people think he should automatically speak? Speaking is learned. I am happy that he at least communicates this way…I’m not forcing him to talk…there’s no way to force a kid to talk! If he talks, ever, I’ll be so happy…and if not, we’re trying to learn a way that we can talk to him! Now I will stop. Our week is hopefully not too full this week…I need some time of peace and rest! Next week, it’s April, so the appointments begin….April is a full month..I think we see all our specialists (all 7 of them!). And, Miss J has spring break, so I’d like to do something fun for her! Please keep us in your prayers…we are really searching for God’s guidance through so much right now…Much love to all!
We re-visited the surgeon today regarding the large volcanos growing on Jack’s stomach. Truthfully, that’s exactly what they look like (and just because I love you, I’ll spare you the pictures). So we get to the office–where, of course they know us and treat us like family (Hey there’s Jack!! How ya doin’? Havin’ a good week?). It was unusually crowded on this fine day, and of course, I get stuck by the one person that WANTS to talk to me…and if you know me, you know how I am about talking in public. I don’t like it. I don’t like to be friendly. I just want to go in, get done, and go home. So this lady, who has 3 children—one is 2 and a half, one is 14 months and one is 3 months (she’s crazy). Do that math. Seriously, I was in shock. Anyway, she’s telling me that her baby wouldn’t eat and he has a feeding tube…blah blah blah….and then she asks, loud enough for probably the entire hospital to hear, “so what’s WRONG with him? I had a friend who had a baby who wouldn’t sleep right and that’s why he had a helmet…” SO I quietly told her that the helmet has nothing to do with the shape of his head, it has to do with his propensity to fall. Then they called her and I didn’t have to talk to her anymore…BUT, in her place sat this other lady. She told me she would pray for my baby–she even asked his name, and wrote it on her Bible(which I totally appreciated and thanked her for)–and then she told me how thankful she was that her kid was fine and healthy. Then they called us (thank you LORD!).
Dr C comes in, pops open Jack’s top, and goes “holy cow!”. Yes, that’s what I kept saying too! Then he says, “Holy #$%^, Heather, I saw these in med school, but I have never seen them as bad as this!” So I ask him, what THEY are…and I used my volcano analogy. He said they are granulomas. Which is a big fancy word that means a bunch of gunk around the sutures…an allergic reaction. Like what happens if you get a splinter and you don’t take it out. So, jokingly, I asked him when Mt. Vesuvius would erupt, and he said, he thought Mt. St. Jack would be the first one to erupt…and I almost choked! He was serious. He said they should erupt. However, he’s not 100% sure that they will, so we’re going back in a month. If they haven’t erupted, he’ll lance them. And the belly button is larger–he said there is no way around surgery for that one. He asked if I was getting more sleep…I said no. He’s still eating every 4 hours…but he told me I looked better. And MOTHER, YOU SHOULD READ THIS PART…he said that I’ll never get to 100 pounds if I can’t sleep through the night(then we talked about metabolism and stuff). So don’t worry about me. I eat. I consume large quantities of coffee. It’s all going to be OK.
Love the picture. Jack with his aptly dubbed “NoNo”! He thinks that’s its name since every time he pulls on the tubing we say, “No! No!”
Tuesday was our big meeting with the Babies Can’t Wait lady. What a disaster that was! We met in this little conference room and she started out by saying that we were there for his 6 month review of services—which is where I started to laugh and said, “what services?” Then I remembered that I had prayed that God use His mouth, not mine (because we all know what would have happened if I told her how I really felt!). Of course, when I remembered that I just started to cry (another good trait, I know). She was asking us to fill out this survey about how often she should see Jack, and it made no sense to me. She really was basically trying to get rid of us I think. She thought she would only have to see Jack 3 times per year! I told her I didn’t understand anything that was on that paper and began to share what all had been going on since March. And I cried…. a lot. I told her how his therapy alone is $2700 per month! I told her how much money in medical bills we already have, and how I am scared that we are going to cap out our insurance. I told her how we can’t even apply for his Medicaid through Katie Beckett (this special program available to medically fragile kids that allows them to have both Medicaid and private insurance) because we STILL don’t have his social security number or a birth certificate. Then, when I was all done, she didn’t speak. Then, when she did speak, she basically just paraphrased what I said, and added, “is that correct?” to the end of her sentence. After almost 2 hours of this, we finally left—she is supposed to be looking for some place that will help us with our medical bills and trying to find me support. I guess she thinks I am crazy. She’s probably half right…….
So then today we met with Dr P the neurologist. There is both good news and not so good news. The good is that all of the metabolic and genetic testing came back OK. Nothing to shake a stick at. He doesn’t have a missing chromosome or anything like that. However, Dr P is not 100% sure that what we have with him now isn’t permanent. He may never eat or swallow or speak. He said the CP has affected mostly the part of his brain that controls the muscles in his neck and his legs. He was highly impressed with Jack’s ability to stand on his ankles! He said he has other kids who are similar and he can’t explain why some are affected so differently than others. He said he wanted to keep a close eye on him, and definitely keep him going in therapy…but they are sending me to sign language class and we are to start teaching him everything in sign language. So when we talk, we sign to him as well. SO…maybe he will sign MaMa before he says it! I’m trying to not be discouraged, but honestly, I am. And it hurts my heart a lot. No one understands how lucky they are to have healthy children until you have one that’s not. And then, you look at other moms (in the same situation) in the mall or out and about and you think “Man, I should go talk to her and buy her a coffee, I bet she’s having a day like mine…” and you see “normal” kids playing and laughing and Mom’s ignoring them, and you think—”Hey Lady, enjoy what God gave you and don’t take it for granted.” I don’t want to complain, and I don’t mean to, but I’m really quite tired. And really,today was just a not so good day.
I’ll try tomorrow to have a sense of humor again….
More pictures…Jack, J and the geese (Jack couldn’t have cared less about them)—Yoda Jack—Janson’s school project (it was all made out of cotton candy—but it melted)–and me and Jack playing fetch.
My family is all a twitter with the impending arrivals of 2 new babies…congratulations are definitely in order. However, I have a little miracle of my own to share. JACK TOOK HIS FIRST STEPS TODAY!!!!!!!! Praise God and Hallelujah!!!! I know it really wasn’t a huge deal but he did it. And it was only sort of a half of a step, but me and the therapists hugged and cried and yelled and scared Jack into a huge fit. But it was good. And it was on his own. Nobody forced him, he just did it—well, for the elephant he did it. We thought maybe the other night he might have taken a step when Alissa was here, but this was different. He didn’t have the couch to hold and he just stepped. He REALLY wanted his elephant. The rest of therapy didn’t go as well. They are trying to get the aquatics center to agree to have him do water therapy. Normally they don’t let infants in the pool, but they are going to do their best to get Jack in. And they want to start him doing sign language since he obviously has no desire to talk. He’s a wonderful screamer—he can scream with the best of them—but words are not flowing from his lips. actually, nothing but very loud screams are coming out. He used to babble a little, but now he’s on hiatus from that and he just screams. SO today we learned the signs for “more” and “done”–neither of which he cared to use. Someday!!!So, that’s it. One little step…hopefully the first of many!