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Facing Reality
Dec 10, 2008 Categorized: Life with Kids • News •
We’ve known for nearly four years now that we would come to this point. It’s not a major dilemma, and there are many things that would be much worse. But still, the reality of the moment is weighing so heavily on my heart. Today we received the official news from Hunter’s new endocrinologist that it is time to start growth hormones. All of the realities that we’ve been able to “ignore” for a while are once again on the surface.
As most of my readers are well aware, Hunter was born with Turner’s Syndrome, a condition caused by missing one of her sex chromosomes. 
TS was responsible for her aortic coarctation at birth that necessitated repair at 5 days old, and without hormone treatment, she would otherwise be extremely short in stature as an adult--like four feet or so. We will eventually need to induce puberty with hormones, and even then she will probably never bear her own children. Hunter could likely have several other medical complications later in life, but she should live a very normal life with a normal IQ. Hunter is blessed. And we are blessed to have her.
Most of the time we only think about the blessings. But watching her being examined by a delightful Vietnamese lady today, all the initial feelings and reactions to the news that Hunter had a genetic disorder came flooding back over me in a way I was not expecting. The doctor asked me why I was emotional and told me everything would be fine, and I know that it will, but there is no way to put in words the deep, unexplainable feelings I had as I watched the examination. My beautiful, perfect, vivacious little girl stood there with her arms outstretched while the doctor commented on each of her TS characteristics and took time to write down each one. It was necessary, and it was appreciated, but it was somehow humiliating. I wanted to tell the doctor, “Look how perfect she is!! I’ve never seen a more beautiful little girl!” But the truth is, one day others may look at her and not think the same thing.
It doesn’t matter what she looks like, although she is quite perfect and beautiful. I believe God made Hunter the way she is on purpose, and I told the doctor so. I believe God has a plan to use Hunter’s TS characteristics for His glory, and I am quite grateful for the way that she is more energetic and fun because of her TS. Se has made our lives so much richer because of it, and I wouldn’t trade her personality for a tall, curvy body for anything. She may not always share that opinion, and that’s okay. I still believe she is a beautiful creation and made by the very hand of God in His image, exactly the way He intended.
So the growth hormones. We knew they were coming, and we’re grateful we can get them for her. Daily injections, six days a week, for as many years until it’s time for puberty. I don’t know which particular drug we’ll use yet, but I’m aware that the annual cost before the insurance coverage is a whole year’s salary for some. Our insurance will bring the cost down considerably, but still I’m probably going to have to devote 100% of my earnings toward the cause as long as I only work part-time. Strangely enough I don’t worry about the finances at all. I know God will provide every penny, just as He always does. Now learning how to stick my daughter--that might give me worry. But I’m steeling my mind against all thoughts of weakness and insisting to myself that this is no big deal. Twelve years from now, Hunter will be grateful when she can almost reach the pedals of the car to drive, and when she doesn’t need a ladder to get something out of the cupboard. Shots are a small price to pay for the convenience of being a normal, though small, adult.
Hunter is still oblivious to all of this, thank goodness, and she was quite a trooper while they drew blood from her vein today. I don’t plan to tell her a thing until the moment before her first shot. I’m not sure exactly how to break it to a three-year-old that she will be getting a shot every day from now on for ten years, so if any of you have had to do that, please give me some insight. I’m sure the Lord will give me wisdom, and we will take it one day at a time. I’m thankful we’re not checking blood sugar and keeping up with insulin injections all day, but nevertheless, we still have to walk a harder road than most. I know God will give us the strength we need to face every reality TS brings our way. We are so blessed.
Hollabacks
Well, I have no wisdom to give - I can’t possibly grasp all that you are going through as you begin this chapter with Hunter… All I offer is my love and my prayers for you guys.
Posted by Rebecca Webb on 12/11 at 12:22 AM
i feel really bad that i didn’t realize how you were feeling last night sitting in bible study. i get so wrapped up in my own little world and i’m sorry i neglected the obvious pain you were feeling. hunter is beautiful and perfect and i know god has huge plans for that little girl. i’ve had to give injections to very small children that were used to getting them everyday. one thing i remember one child saying was god was so busy making her smart and beautiful that he left out some of “her insides out” and she had to get a shot to put it in there everyday. now we know god doesn’t make mistakes or leave anything out but it worked for that little girl. i think whatever works for you and hunter is best and you can always tweak it as she gets older and understands more. i love you guys and felt really lousy because i was insensitive.
Posted by amber on 12/11 at 03:42 PM
Praying for you as you walk this new road. Trusting God will give you the words and wisdom of how to share this all with Hunter just as He gives the money. And when she’s older and struggling with being short, tell her to give me a call and I’ll share all the AWESOME things that come with being under 5’ tall! God has already used her in a mighty way, and I can’t wait to watch what’s coming. Love you all -
Posted by Kaci on 12/11 at 03:42 PM
i meant to say left out some of “her insides”.
that looked confusing. sorry!
Posted by amber on 12/11 at 03:45 PM
We are sincerely praying for you as the Lord gives you grace and wisdom and that His arms will completely envelop you all. I just envision her in my mind and seeing your pictures and can see how the Lord made her so for Him! Bless you Heather and your family.
Posted by Karen on 12/11 at 04:18 PM
Heather - Thank you for sharing your honest emotions and struggles. I am praying for you as you walk the road of growth hormones. May the Lord give you wisdom and peace as you raise Hunter.
Posted by Mindy Jill on 12/11 at 11:12 PM
Awww...all these sweet words bring tears to my eyes. I love you guys!! Thanks to those who have emailed, too.
Posted by heatherkate on 12/12 at 12:06 AM
You have a beautiful little girl and I know that you are very proud of her, as you should be. I don’t have any answers as to why things happen like they do, but I have learned through my 55 years on this earth that God doesn’t make mistakes. I will be praying for you all. God bless you.
Bro. Leland
Phil.1:6
Posted by Leland Crawford on 12/13 at 11:22 AM
Heather, Hunter is a perfect child and God has big plans for her. He made her just the way she is and He will supply all she needs through these shots and His grace and your love and Bills. I don’t know how I did it but when MaKenzie was going through chemo I had to give her Neupogen shots to increase her white blood cell count. It was hard at first and I won’t say I always did it gracefully (you’ll have to ask MaKenzie 
) but we did it and she did great. Kids understand more than you think and they know you love them and only want the best for them. I would love to visit with you about our experience. It was so private that not many people knew but it helped her and it was worth every tear (mostly mine, she hardly ever cried). Amber is a great friend and I encourage you to have her do the first shot or so and tell you how to do it correctly. I had a friend of mine from work come over the first day and show me how and give me some tips. I would love to visit with you.
Love and prayers, Saundra
Posted by Saundra on 12/13 at 02:26 PM
Hunter is God’s wonderful creation and she is a delight and joy to so many. God has a big plan for her life and He will definately see you all through this. We love you and we will be praying that you all receive and feel God’s love every day. Keep on being great parents.
Posted by Kim on 12/17 at 12:36 PM