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Trials and Tribulations
Feb 03, 2009 Categorized: Life with Kids •
We’re having some not-so-fun times in the McKelvey household these days. Don’t hear me wrong--we’re having fun times too, and we’re trying to not let those fun times be shrouded by the muck we’re wading through. But despite our positive attitudes and reliance on God’s strength, there is still a sadness in our hearts we’re having to face. At times I feel a little guilty about actually grieving about seemingly minor things, but no matter how small it seems in comparison to another’s trials, THESE trials are ours, and they’re not going away.
I’ve already mentioned in an earlier post that my daughter started growth hormone therapy last week. GH therapy entails a daily (and VERY expensive) injection, 6 days a week, for many years. It is not required in order for her to be healthy. It is, however, required for her to reach a normal height that will allow her to reach the dishes, drive a car, and not otherwise be gawked at as an adult. We made the decision to start GH therapy very cautiously and with much prayer and consideration. A daily injection for a three-year-old is not something you take light-heartedly.
The first few shots have not been easy for her, and they have not been easy for me and Bill. In fact, they’ve been downright torturous for all of us. After we go through the routine of holding her down while she kicks and screams, trying to console her to stillness, I usually end up in the back bedroom crying my eyes out while Bill treats her to a piece of candy and a few laughs. While the the magical little pen device that does the deed is supposed to be error-free, it’s really not. After my two awful attempts at a perfectly placed, low-injury injection, I’m giving it up for a couple of days to let Bill do it. He seemed to pick it up faster than I am. I really hate doing needle practice on my preschooler. But even if I practiced it on myself, at sixty bucks a pop, it wouldn’t simulate a tiny, muscular leg that pauses but for a moment. She bounces back almost immediately, but by bedtime, she’s already talking about not getting a shot tomorrow. I cannot tell you how hard it is to tell a 3-year-old over, and over, every single day, that yes, I’m sorry, she has to get a shot tomorrow too. No amount of explanation in the world can help her understand that. She did, however, like the idea that one day she will be tall enough to sneak snacks from the cupboard (at nighttime, she added).
So take that backdrop, and place in front of it a nearly-six-year-old we’ve been unable to potty-train. After many, many months of telling the doctor that I thought our potty-training struggles were a medical condition, when Will was finally old enough to call it strikingly abnormal, we finally began the workup for it. Unfortunately we then had to spend a year and a half working through severe constipation before they would even do the first test on his bladder to find out if it was normal. Last month, we miraculously achieved a clean bowel, and we scheduled all of the tests necessary to check out his bladder.
Today was the second of these tests, and it wasn’t a whole lot of fun for him. He did beautifully, though, and was quite a trooper. What we discovered was that his bladder is malformed, too small, and unable to empty properly. Neurogenic bladder is the general term they gave us, but we really don’t know yet why it doesn’t work right. The upcoming kidney ultrasound and spinal MRI will help us to know if his kidneys are still healthy and whether his spinal cord is tethered. Spinal cord tethering sounds scary, but it could be surgically repaired. A neurogenic bladder with no known cause cannot be repaired. We are going to try conservative measures to establish proper coordination of the muscles in that area by doing biofeedback sessions on a weekly basis for the next 6 weeks, along with some oral medication. I guess you can call a weekly, 5-hour round trip, all-day affair conservative. However, despite our valiant attempts to solve this problem behaviorally, we are fairly certain that we will end up doing continuous, intermittent catheterization. That means that my little kindergarten darling will have to be catheterized in order to void every 3 hours or so, all day, every day. For, like, ever.
As you can tell, this is an extremely sensitive medical problem for a five-year-old. I have resisted even mentioning it to anyone for prayer, because I did not want everyone in creation asking him if he’s feeling better. Neither is he fully aware of the gravity of the situation (thank goodness), and I do not need people instilling fear and anxiety in him out of intended goodwill. As church staff, we lead very public lives, and I realize that this post makes it that much more public. But I’m finally to the point in dealing with this that I’m able to swallow my own pride and ask for prayer for a miracle of healing in his body. He is unaware of the potential for regular catheterization, and I would appreciate if any parents reading this would not mention it to or around your children, who might say something to him unknowingly.
My children are very smart. They are very beautiful. And they are very talented in their hobbies. They are normal children who lead normal lives. Yet when I kiss them goodnight, long after they are asleep, I feel the pain of knowing that this early in their little lives, they have serious, life-altering (at least for Will) medical conditions to deal with, not sometimes, but on a daily, hourly basis. Hunter thinks of her shots all day. And so do I. Eventually, Will has to deal with his issues all day. One of these days, we’ll all be used to these new routines, and we won’t bat an eye about it. Except when we have to be on the go and need to tote with us refrigerated medication and sterile catheter supplies. But for some reason, knowing that we’ll get used to it does nothing for soothing the current pain and trauma that dealing with all of this causes.
One thing is for sure--in all of the uncertainty, God is here to carry us through these tough times. I feel him carry my hand as it sticks Hunter’s skin, not quite sure if I’m really doing it or not. I’m depending on him to carry my hands through the first and subsequent catheterizations with Will, while scared to death that I will pass out. I know that He gives me the words to say to each child about what they’re going through and why we can’t change it. I don’t think I always make the best choice of words, but I hope that He filters what they hear. I just now realized that I need to seek advice on helping kids cope with disease. Am I really a mom of two special needs children?
Hollabacks
Wow Heather, what a tough time you guys have been having. I had no idea!!! I am really proud that you are able to talk about it though!! Your strenght in your relationship with God is so amazing!! Knowing you can stay strong in your beliefs through all of these trials gives me hope that I can do the same in my daily life as well! You are an inspiration, please know that! I will pray for you all daily!!! Please let me know what else I can do if anything . Please know that Tim and I are here for you all if you EVER need anything!!!
Posted by bobbie mach on 02/04 at 12:30 AM
Heather, it breaks my heart to hear everything you and your family are going through. When Laura was 5 she had psoriasis extremely bad on her hands (both sides) up to the wrist, elbows, knees, and feet up to the ankle. The bottom of her feet were so cracked open that she could not wear shoes or walk. She would sit and peel skin from her hands. It left a pile on the carpet. This all happened in a matter of 3 days. I had to soak her in bath water with liquid tar in it for 15 minutes each night. It burned really bad. We sang Christmas songs to try and take her mind off of it but like Hunter, that did not work too well. One night she looked at me with tears streaming down her face and said “Mommy, I hope I never have to do this to my child.” Needless to say, I cried like a baby. We also had to make weekly trips to Baton Rouge from Colfax to a specialist to get ultra violet light treatments on all of the spots. If they happened to hit regular skin as well, it was like a terrible sunburn. I also had to put a very, very expensive ointment on all of the places at night, wrap them in saran wrap, and then an ace bandage. She wore socks and gloves on her hands and feet to bed. A doctor in Shreveport finally discovered that she had a zinc deficiency. A daily zinc tablet cleared it up completely in less that 2 weeks. I will pray for you daily for strenth, wisdom, and peace of mind. I don’t know if there is such a thing or not, but it would be great if you could find a doll and toy doctor kit so Hunter could give her doll shots too? And now Will. I pray the doctors will find this is something that can be surgically corrected. I know it seems like it is never-ending and this may be. But I know God will give you, Bill, Will, and Hunter the strength to get through this. God is using you in a mighty way to touch many, many people - some in similar situations and many you do not even know. I pray that God will continue to use your faith in Him to inspire and encourage others. I ask that you put a family I know on your prayer list. The Dad of the baby played t-ball with Ryan and the Granddad was one of the coached. They are the Maxey’s. Their first daughter died with a rare cancerous brain tumor when she was about 2 years old. They then had a son who is 2 years old now. They just had another daughter the first of October. The doctors discovered in December that she has the same kind of cancer as the first daughter along with another cancerous tumor on her spine that is inoperable. The Dad is in seminary in New Orleans. Their blog is http://www.maxeyweb.com. Stay strong but do take time to go to your room and cry yours eyes out (it is a great stress reliever) and always remember that as much as your family and friends here on earth love you, our heavenly Father loves you so very much more!!
Posted by Martha Alexander on 02/04 at 01:40 AM
Heather,
I have nothing inspirational to say. But you are beautiful (inside and out) and you are strong! That is why your kids are beautiful and strong. It’s okay to cry, feel embarrassed, whatever. Share the burden. That is what the body of Christ is all about.
On a lighter note- if you could find a part time job piercing ears, you could practice using needles on other people...Maybe…
Posted by Faith on 02/04 at 11:28 AM
Heather,
Your childrens lives my be in turmoil right now and you probably feel like “WHY ME”, but God has a plan. As long as you keep your Faith and all your battle armor of God on, you and your family will be right where God wants you. Your experiences may help someone else, seems as though God’s plan maybe different in some ways than ours but I have found that even though the world ‘beats up on you’, with Faith in Jesus, he will never give you more than you can handle. I personally know that Jesus will never let you down. I will have to write down my experiences since high school, it will probably be a small book. Your Sister in Christ Robin Boss- Blair
Posted by Robin Boss-Blair on 02/04 at 12:09 PM
I love you Sister, and will be praying EVERY day....it stinks, but your kids are strong...I have a feeling that if you watch them through these tough time, you will find yourself learning even more of God’s strength...it will come through in the moments that Hunter rebounds from her shot just a little quicker than the last time, or when Will can enjoy running around outside for a few hours longer than he could before...you and Bill have taught them of God’s strength...and please remember, God can handle your anger and frustration...He understands it. All my love to all four of you, Banner:)
Posted by Banner Brewer on 02/07 at 10:28 PM
Heather, Though we have only know each other a short time and for the most part have only a professional relationship, my heart goes out to your family. I am just now reading this post tonight, however, I have felt an over-whelming call to pray for Will since you briefly mentioned what you guys were going through a couple of weeks ago. I thought many times about telling you that I was praying for you guys and specifically for miraculous healing of Will’s bladder. But until now, I felt that I should just shut up and pray. I just want you to know that your family is in my prayers. I know I am small, and I know I am just one person, but if we respond to His call, GOD can do amazing things through one small person. Keep praying. Prayer changes things.
Posted by Christa on 02/20 at 11:09 PM
Heather-
Your children are blessed to have you as their mother. I wish you the best of luck and will keep in our prayers.
Jodi
Posted by Jodi Hughes Blyzes on 02/28 at 05:40 PM