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 June 4th- 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 exhausted our head sizes even further and 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…"
Two years later Courtney had not improved. I had gotten tired of the don't worry be happy scenario. Ashley was now the same size as Courtney. I was beginning to panic. The pediatrician now said I was being hysterical and over anxious, and not to bother him about such concerns! Well this poor man paid for his lack of experience and tact as I unleashed a truly panicked mother's verbal rage. 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 of both my husband's family and mine. After a battery of tests and more than 4 weeks time, 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".) WRONG! What was facing us now was terrifying. She did need thyroid pills but growth hormone was new (this was many years ago) 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 terrified. During the 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 looked away fearing that we would loose control and break into tears.
The decision was a tough one and we could not make it alone. We love our daughters, they are our life. To have Courtney healthy at the height of 4 feet 2 as opposed to the uncertain possibilities was strongly considered. Yet to determine her future, to live her entire life the size of a child was an aspect we had to seriously consider. And because there were other serious aspects which growth hormone affected; her heart size and strength, her lung development and strength, her bone strength, immune system function, and much more....we had a lot to learn, very fast. I called my father who was a hospital director with access to people and inside knowledge. It was a serious call, and a serious decision, his first born grandchild's life was in the balance and he 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 called the doctor. We were going ahead with the treatments. 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 do for a 5 year old child. Courtney did not act concerned. I do not think she was willing to believe us. Later, we tucked the girls in for the night, and then sat side by side in silence on the couch 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 racing out of control. All I could do was hang on and keep going.
Lesson Day- June 9th. My husband’s Birthday! The 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. 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 struck Courtney with a vengeance. My husband took the "stuff" required to do an injection into the bathroom. We had to enclose Courtney in the bathroom because she kept running away. 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 again to assure her of our love and motives.
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 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 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 all of 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 more.
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. It was not an ordinary broken arm. As a matter of fact it looked so bad that the young X-ray technician thought we had been abusing her by breaking her arm hundreds of times! Hearing that "review" we questioned their expertise and promptly took her to Children's Hospital. After hours and hours the staff had the Chief of Orthopedics called in at 4:30 a.m. ! He too examined her. 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.
And if something was lucky about Courtney having her problem, it was this... I had met some incredible Mom's (just like me). And due to the early days involved with starting a children's charity, we all had a great deal of "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. She knew of only 18 cases in the country and gave me the name and number of another mom. 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 that my daughter was only mildly affected with the syndrome. Her symptoms were only slowly progressive. We found out why... later.
Five years after her diagnosis, Ashley had gotten up three times before midnight to go the bathroom. So being the intensely observant mother, I took her to the pediatrician the next day. I thought she might have a bladder infection. The pediatrician literally took one look at her, smelled her breath, took some blood, and walked us to the lab and stood there while we all waited for the results with us. Then she walked us back to her office and said, "Mrs. Harvey, Ashley has diabetes." (The developing diabetes had somehow stunted the progression of the 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, trying to console me! Then she quietly asked, "am I going to die?"
Once again, I 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 the terror and shame most children going through similar problems experience, due to the fast networking of other children "just like me".
Sometimes people wonder why I seem to give so many details about Courtney's medical problems and skip over many details about Ashley. I was bothered by this. I 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 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.
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