|
 June 4th- was one of the happiest days in my life. The birth of my first child, Courtney. As the pediatrician checked her over and all was "A-OK", I joyfully and sincerely said my prayers of thanks.
For the next 18 months, her father and I watched over every move she made and marveled at every silly thing. We just knew our child was the best child in the entire world! She was given one hundred percent of our attention and every toy imaginable, including toys from supermarket aisles. I admit it, she was spoiled rotten...until December 29th of the following year. Our second daughter Ashley was born. The reality of having two perfect children blew our ego's even further out of this world BUT it also put a fast reality check on our spoil the child bank account!
As the girls began growing up I naturally (despite my best efforts not to) started comparing the two. When Courtney was 3 years old, Ashley was almost as tall as her sister. I mentioned my concern to the girl's pediatrician. He said, "Don't worry…" For the next two years, at each check up I heard Don't worry.
By the time Courtney was 5, I had gotten tired of the don't worry be happy scenario. Her younger sister Ashley was now the same height as her "big" sister and I was beginning to panic. So again, at her annual check up I expressed my concern. The pediatrician said I was being a hysterical and over anxious mother, (I had not expressed any loud opinions I was just insistent up to this point!) and he said not to bother him about such concerns! Well this young doctor paid for his lack of experience and tact as I unleashed a real panicked mother's verbal lasking. I was insisting that all I was asking for was for him to "listen to me" and run some tests! "Just check her thyroid", I said. But he was stern and refused! The nurse took me aside. She told me to come in without an appointment on the same date each month for several months, simply to measure Courtney. And laying her job on the line, said she would give me the referral I needed to see a specialist if the measurements showed that Courtney wasn't growing normally. (Long story –military nurse outranked doctor).
Anyway, six months later, Courtney was indeed referred to a Pediatric Endocrinologist. My mothers instincts were … unfortunately …right! The specialist examined her thoroughly, and took a complete medical history from both my husband and me. Then she ordered a battery of tests and we went home. Four weeks later all the tests were in and we had a diagnosis. She had a pituitary disorder causing her to be deficient in both thyroid and growth hormones.
Great! I thought, let's get the pills and get started! (You see I too had not grown normally… thyroid pills "fixed me" and I had no clue about growth hormone.) Boy was I WRONG! What was facing us now was terrifying. She did need thyroid pills but growth hormone was new (this was many years ago-1985) and required regular injections. The long term effects of this new medicine were not known at the time, the doctor explained. However, without growth hormone she would be perfectly proportioned but stand only about 4 feet 2 inches tall as an adult. She asked us to go home, discuss it thoroughly, and get back to her with our decision.
My husband and I were scared to death. We were young parents (25 years old) and had no clue how to deal with all of this. During our 45 minute drive back home from the doctor's office, we tried to be playful with the kids, singing and keeping them busy. Occasionally we glanced at each other and quickly look away fearing that we would loose control and break into tears.
The decision to use growth hormone or not was a really tough one. We could not make it alone, we needed help. We love our daughters, they are our life. To have Courtney healthy at the height of 4 feet 2 as compared to the uncertain possibilities was strongly considered. Yet, to choose to make her live her entire life the size of a child was something we had to seriously consider.
The deal breaker for us in our decision came in two parts. 1- There were serious aspects that growth hormone affected other than just what we could see...her height. Her heart size and strength, her lung development and strength, her bone strength, immune system function, and much more were all affected by her lack of growth hormone. We had a lot to learn....fast!
I called my parents. I am blessed to have a mother who does not EVER let any detail go unresearched and a father who was a hospital director with access to people and inside knowledge. It was a serious call. Their first born grandchild's life was in the balance and they tackled the job with the fierceness of a protective lion. After several weeks of agonizing waiting, my father finally called. He said, "It's safe. I can’t tell you what to do but if it were me I would go ahead with the treatments." He relayed all of the information he had gathered piece by piece. I knew that this very protective grandfather would have never made such a definitive statement without complete faith. We made our decision to go ahead with the treatmets and called the doctor. We made an appointment for the next day, to learn how to give her the shots.
The evening before the "lesson day" was horrible. We sat down with both girls, one in each of our laps. We explained the events and the situation as best we could... for a 5 year old child. Courtney did not act concerned. I do not think she was capable of grasping the situation or willing to believe us. We tucked the girls in for the night, and went to the family room. We sat -holding each other- side by side in silence for hours. There were no words left to say, only tears.
My thoughts raced...I will be brave. I have to be strong so that Courtney will not be afraid. Oh God, please help me make it through this and please let this decision be the best one for her...How is she going to react? Is she going to hate us? Can I actually push that needle into her tiny little body? My mind was out of control. All I could do was hang on and keep going.
Lesson Day- June 9th. My husband’s Birthday! The party activities helped distract Courtney. Yet, every smile on her little round face brought doubt in our hearts...would she be the same sweet child after all of this started? What if our decision is the wrong choice? We dressed the girls for the doctors office and began what seemed to be the shortest ride ever to the hospital.
I DON'T WANT TO BE HERE , I thought, as we pulled into the hospital parking lot. But being the adult, I composed my nerves, gathered Courtney in my arms went to the office. Dad gathered up Ashley, and put his arm around my shoulder playing with Courtney's arm which was clinging to me. My throat ached with a fierce gripping sensation. Trembling hands signed my daughters name on the waiting list, as I tried to smile.
She jumped a little each time a name was called out, but quickly returned to play hearing someone else's name. COURTNEY HARVEY, the nurse's voice echoed...I looked at my husband. I was taking deep breaths to keep control. Without a word he gathered Courtney up in his arms, kissed her cheek, and headed down the hall.
James, my husband learned the details of preparing the syringe etc. alone. I remained with Ashley in the waiting room. About 30 minutes later he reappeared ghostly white with Courtney in his arms. She was smiling. She thought it was all over. Poor Dad was trying to keep his “public” composure as he had just given his baby her first shot with a nurse evaluating his skills.
The next evening I picked her up and said, "OK baby, now it's time to get your shot". This is when reality hit the 5 year old's brain. My husband gathered the "stuff" required to do an injection and took it into the bathroom. We had to enclose Courtney in the bathroom because after we announced that it was "time" - she kept running away. Dad corralled her in the bathroom and closed the door to prevent her escape. When faced with the inevitable, she began kicking and screaming. I stood in the hall leaning on the closed bathroom door with tears flooding my face. I gripped my mouth with both hands to hide my own gasping sounds as I heard my baby yell and beg her father to love her...please don't daddy...I'll be a good girl...I PROMISE!
I heard one final scream and then my husband appeared. He was pale, shaking, and holding her in his arms. And without words, he handed her to me and walked quickly to our bedroom closing the door behind him. I held Courtney, rocked her and tried to assure her of our love and motives.
NOTE to new parents: The old style of injection was indeed a painful one. A large needle was used. We had to push the needle all of the way, sometimes hitting the bone and pull it back to make sure it was in her muscle. (Today they use small insulin needles and the pain is minor. Unfortunately, as one of the "first" children to benefit from this modern medicine, she was also one who taught lessons for future children to benefit from. A sad but necessary part of safe medicine.)
Courtney continued her fight against the shots every single time for 18 long months. She would tolerate her dad doing the shot (after a good battle), but not me. My job was the consoler. We had to explain to the neighbors that the blood curdling screams at 8:00 p.m. meant shot time.
But then came the day when dad (he is in the Air Force) had to leave for three months. I had been dreading this, it was now my turn...all alone. Courtney was quiet all day. I thought she was sad about her daddy leaving. That evening I prepared the syringe and Courtney's silent plan came into full bloom. I went into the living room where she was watching television. She ran. I pulled her out from underneath the bed...she ran again and again. She was fighting me with the panic and furry of a drowning child. She was hitting, biting, clawing, and punching me in the face. I couldn't let go of my hands to give her the shot without her escaping. So I just held on, and it literally took all of my strength to do so. ( I only stand at 5 feet tall myself.)
I held on to this squirming child for 45 minutes! And then I got mad and swatted her rear end. As this was not a common occurrence for her, I got her attention ...quickly! She immediately halted the fight. We were both dripping wet and exhausted. She relaxed her muscle just enough for me to safely give her the shot. Afterwards, we talked for a long time. We came to an understanding, and we both grew up a little.
The battles ended permanently that night. From that night forward, she did her best to tolerate the injections with only a few occasional whimpers. No more running and hiding. A few weeks later, we got a BIG blessing-we began using the small insulin needles. Months later, James finally returned home. He was shocked at her progress. I don't know who was more proud, Courtney or her daddy. The smiles were genuine and frequent. But wait...she had one more trick up her sleeve.
Two weeks after daddy's arrival it was Mother's Day. Again Courtney was quiet all day long. I thought, "Oh no what is going to happen?" Ashley colored mountains of pictures for me, and James took us out to dinner. When we got home it was get ready for bed time and that meant the shot. Courtney nervously came to me in the kitchen. She looked up at me with the nervous innocence, and big round eyes special only to a child. She said, "Happy Mother's Day Mommie! ....for your present I'm going to do my shot all by myself", and she produced a prepared needle from behind her back.
I followed her to the family room standing in the doorway. I never believed, not for a second that she could do this. She was trembling. Slowly she began to wipe her leg with an alcohol pad. She wiped and she wiped and she wiped. It was the cleanest injection site in the world! Then she picked up the syringe. She held it over her leg for a minute and with her eyes shut tight. Her bottom lip was sucked in so hard that it was invisible. Her tiny hand was shaking...Then she opened her eyes, and thrust the needle in her thigh. She whimpered slightly as she pulled the needle out. Then she looked up at me , "Happy Mommie's Day" she yelled with the BIGGEST toothless grin from ear to ear.
I cried and cried and then cried some more. Mother's Day 1988, I was given the gift of sacrificial love from the tiniest of sources...my baby girl.
You know there is a saying that the Lord will never give you more of a burden than he knows you can bear. I believe this to be true. However, since the experience with Courtney - my life took not just one but two more dramatic turns. And due to these events the Lord and I have had some loud conversations. Some of which I am terribly ashamed of!
You see my baby daughter Ashley, broke her arm about 2 months after Courtney gave me my Mother's Day gift. To look at her you could not tell "for sure" that it was broken but we we were concerned enough that we took her to the hospital to be sure. Apparently, it was not an ordinary broken arm. As a matter of fact it looked so bad on the x-ray that the young X-ray technician thought we had been abusing her by breaking her arm hundreds of times! Hearing that "review" we immediately questioned their competancy and expertise. We left that hospital and drove directly to the closest Children's Hospital an hour away. After hours and hours of many doctors reviewing the x-rays and talking with all of us- the staff called the Chief of Orthopedics to the hopsital. It was now 4:30 in the morning ! He examined her and reviewed the x-rays. And after tortuous hours waiting he told us that she had a rare condition called McCune-Albright Syndrome. Among other things it causes a bone deterioration. No treatments. No cures. Yes it does continue to affect more bones etc., etc. The words were so horrible I began blocking their entrance into my brain.
My husband and I were in shock! We just could not believe what they were saying! She looks perfectly healthy! How could two fairly normal and healthy adults have 2 medically challenged children? They just cannot be right!!!
Fortunatley, because of Courtney's growth problem I had met (and began MAGIC) with some incredible Mom's. Mary Andrews, Teresa Tucker, Dee Glidewell, Ellen Gibson, Linda Albright and I had all been "networking" with families and physicians throughout the country. Therefore, upon my arrival home with my baby, I immediately picked up the phone to call Mary Andrews, co-founder and guiding angel to all of us with MAGIC. She gave me the name of a nurse In Virginia- who gave me the name of another nurse at the National Institutes of Health- who knew of only 18 cases in the US- and gave me the name and number of another mom with a chld who had this same problem. My third call was to that mom in Ohio who literally talked me through my pain and fear. She truly saved my sanity!
Once again, we were blessed. It appeared as if my daughter was only mildly affected with the McCune-Albright syndrome. Her symptoms were slowly progressive for some reason....
Five years after her diagnosis, Ashley had gotten up three times before midnight to go the bathroom. This had been occurring off and on for a few months so I took her to the pediatrician. I thought she might have a bladder infection. The pediatrician literally took one look at her, smelled her breath, took some blood, and personally walked us to the lab and stood there with us while we all waited for the results. This put me on high alert but I instinctually did not ask her why she was doing this...I learned a long time ago that if you ask...you will be told! And there are some things that can wait! The lab tech handed her a piece of paper and the doctor walked us back to her office and closed the door. Looking at the paper she said, "Mrs. Harvey, Ashley has diabetes." (The developing diabetes had somehow stunted the progression of the McCune-Albright Syndrome bone disease.) Ashley didn't know what diabetes was. But upon hearing the words I gasped. Ashley looked at me and saw tears streaming down my face. This little baby all of ten years of age, put her tiny arm on my back and began patting me! Then she looked directly into my eyes and quietly asked, "am I going to die?" It was quite a while before I let go of her ... I even carried this 10 year old kid to the doctors desk to call my husband.
At this juncture I once again, relied upon MAGIC to help me through the initial emotional trauma. There is no compassion better given nor received than that of a parent who has lived the trauma. And as we continue to battle the sometimes overwhelming problems encountered by children with medical problems, we continue to rely heavily on each others support. Ashley did not experience problems most children going through similar problems experience, due to the fast networking of other children "just like me". You may be able to handle things...but remember- it is for the children that networking does its greatest healing!
Sometimes people ask why I give so many details about Courtney's medical problems and skip over details about Ashley. I was bothered by this until I finally realized that due to the intense emotional trauma overload of having not one but two affected children, one of which is life threatening, I can only deal with so much. And the more serious the problem, the more I tend to internalize. When I reach my overflow limits, I call for help. I call MAGIC and I get exactly what I need to help my children.
Today, Courtney stands 5'3" tall. She is beautiful, intelligent, and will hopefully never experience the medical complications associated with her disorder. Ashley is also beautiful and intelligent. She has a fighter's independent spirit, and an I can do anything attitude. Many people have commented on what a good job her father and I have done in raising two physically challenged, yet emotionally stable children. In all honesty, we could not have done it alone. We could not have done it without our parents, each other, a great deal of faith nor without MAGIC. I personally, could not have made it without Mary Andrews.
There is nothing, absolutely nothing more comforting than another parent who can say those words from experience...everything will be ok. It feels as real and as reassuring as the big bear hugs our parents gave us when we were children.
And now that medical technology has once again pushed forward, the important role of growth hormone in the adult body is being not only recognized, but also treated. We are all in this together. And since the issues are "rare", if we don't band together, there will be no one for those who follow.
Please, please consider a donation to help us keep going! Thank you.
|
