If you are a foster or adoptive parent, you have probably been both amused and frustrated at things some healthcare providers say and ask you during your child’s appointments. For me, dealing with medical professionals has been quite the learning curve.
Here is an article I recently wrote for Adoption.com about this very subject. It was a timely article as I had just experienced an uncomfortable (to say the least) appointment with my child!
I sat on my bed soaking up the silence of an empty house with the knowledge that soon the kids would be home and I would hear, “Mom! I want this!” and “Mom, he’s bugging me!” “Mom!” “Mom!” “MOMMMMM!!”
Silence sure is golden when it seems so evasive these days.
But then, Dear Parent of a Sick Child, I thought of you.
The beeps of machines are the only sounds you hear. The pacing of your own anxious feet, the hustle of nurses in and out the door, and the frenzied whispered prayers that roll off your tongue are the sounds that surround your life right now.
The sound of silence is deafening, isn’t it?
You are beginning to despise silence. Day in and day out, you wait for a noise…any noise…that would alert your anxious heart to the awakening of your child. Sure, you hear the occasional whimper and you engage in conversations with others, but you know these things do not equate for the joyful, full-on, beautiful noise of your child.
During the times when I’m frustrated by my four-year-old asking for “More kisses, Mommy” as I’m trying to get him to go to sleep, you are praying for your little one to wake up from the drug-induced haze of sleep. The moments when I’ve told my eight-year-old daughter that I need some space, you have craved more time and more space with yours. When I’ve had to get on to my ten-year-old because he decided to put off a homework assignment, the furthest thing from your mind is worrying about late schoolwork.
These things and these noises are ones that parents of well children take for granted.
You’ve heard people say, “Everything happens for a reason.” That just seems like a load of nonsense, doesn’t it? There doesn’t seem to be any good reason that your child is struggling to survive. It doesn’t make sense that your child has to endure the pain and hardship of a severe, life-threatening illness. If ever you wished for silence, it would be the times when those five words were spoken to you as if you needed enlightenment or some form of justification for the unjust attack on your child’s body.
You never imagined how painfully loud silence could be until you were forced to sit in the same non-comforting hospital chair for days, months even, and you became engulfed by it. You long to hear the heavy pitter-patter of your little one’s thick feet bouncing down the floor. You yearn to hear the slightly off-key voice of your daughter belting out her favorite song. You wish you could hear just one more of your son’s goofy excuses for not getting his homework done.
This.
This sits so heavy on my heart.
The loud and painful sound of silence.
The ugly truth is that none of us are prepared for what you have been living the past few months or years. It is hard to prepare for hell when you are living a seemingly, heavenly life, but this is what you are going through, isn’t it? When you hear other parents complain about how loud their kids are, you just want to escape inside your own skin in order to maintain a sense of control and not lose your cool.
When the laughter of a child barrels its way in your direction, you notice it and you enjoy it, but those feelings are fleeting. Your joy dissolves into despair as you turn to the sound of silence surrounding you while holding your child’s hand, and you go right back to whispering words like these that have become your mantra:
“For God alone, O my soul, wait in silence, for my hope is from him. He only is my rock and my salvation, my fortress; I shall not be shaken. On God rests my salvation and my glory; my mighty rock, my refuge is God.” -Psalms 62:5-7
Dear Parent of a Sick Child,
Hang in there. Don’t be too proud to ask for help or too timid to ask for prayer. Celebrate the slightest of improvements. Never give up on the healing power of hope. May God filter the silence with grace.
For Parents of Well Children – May we never, ever take for granted the noises of our children.
Author’s Note: I am not a parent of a sick child, thankfully, but I was a sick child. As an adult, I now understand what my parents went through and the trauma that still touches their lives from watching me dance within the shadow of death. I have such compassion for parents of sick children. This is the fifth letter in my, “Dear Parent of a Sick Child Series.” I truly hope this letter series brings a small measure of comfort for the families waiting for their children to be well.
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Hello there. How are you? No, really…how are you? I’m sure you are tired, worried, overwhelmed, desperately seeking normalcy, and wondering when your child will get better. I hope my words bring you encouragement.
When I was a sick child, I remember being cared for by adults. I remember the adults that surrounded my bedside whispering encouragement into my ears. I remember never waking up alone in my hospital room, never wondering if I would be taken care of, and never imagining that I was not loved.
My memories are mostly like flashes from a movie screen. These moments are frozen in time. I knew I was in an immense amount of pain, but I don’t remember the pain or the struggle to survive. I don’t remember my body being ravaged by infection. I don’t remember these moments at all.
I do, however, remember the love I felt in the room. I remember the gentle rubbing of my arms, the softness of someone holding my hand, the brushing away of my hair from my eyes, and the kisses on my face. I remember these things.
I remember receiving cards, letters, balloons, flowers, stuffed animals, and just about anything else that would bring a smile to me. I remember waking up with my parents there….all of the time. Even when I was in and out of consciousness, I remember them.
I also remember my parents never showing their fear, despite being filled with it. I remember how they showed great strength; even though their bodies wore the trappings of exhaustion. I remember their caring hands, their patience with my recovery, and their filling-in to meet my daily needs. I was told I was a “little trooper”, and that my will to live was stronger than any illness. I recall my mother giving me baths in the hospital, and my dad holding my hand as often as he could.
Please, dear parent, please know that your presence is precious to your sick child. Your bravery is beautiful, and your courage is contagious. Don’t stop fighting for your child. Continue asking questions about treatment options. Don’t stop whispering sweet words of hope into your child’s ears. These words will resonate deep down in your child.
Tell your child how much you love them. Tell your child that he or she is the bravest little one you have ever seen. Speak stories of healing. Tell your child that he or she is a superhero. Give your child the hope that you are clinging to. Pray for your child; pray over child; and ask others to join in your prayers.
Your child knows you are there. He or she knows it, even if not awake. Don’t forget that. You are the most significant person in his or her life. You matter. Please, dear parent, please know how much you mean to your sickly child.
Hang in there. You are in a situation that you never dreamed you would be in. You would give anything to trade positions with your baby, but you cannot. I know how hard that must be for you.
Dear Parent of a Sick Child, get some sleep. Ask for help. Take care of yourself. You are a superhero. You are a trooper. Your will is strong. Don’t forget these things.
Your child needs you.
Bless you, dear parent, bless you. Thank you for striving for the best care for your child and for holding his or her hand in the middle of many sleepless nights. Thank you for putting on the bravest face you can during this difficult time.
Dear Parent of a Sick Child, what you are doing matters. Your strength, wisdom, love, hope, courage, and your presence are the greatest gifts you can give your child. Don’t forget that, and don’t be discouraged.
Your child will remember your presence more than the pain.
I’m giving running a try. So far, I’ve accomplished a 5K called “Color Me Rad”. With each step I take, my breath is a little more labored, the pain is a little greater, and my body is trying to convince my mind to stop. My body is trying to say “it’s not worth it”, but I know it is quite worth it. Anything I can do to stay healthy is always worth it.
I’ve posted a picture of myself following the run….I know….the picture is quite silly. For those of you who do not live in Missouri, you should know that our weather is a little unpredictable. For example, it was around 80 degrees today, and is supposed to be in the 40’s and quite cold by Thursday. The morning of the run it was in the 40’s and rainy, so even though we were freezing, and being doused with powdered paint, we still had a blast!
I think I’ll stick with running. Now that I am nine years away from the age of 50 and raising three children (ages 6, 4, and 9 months), my awareness and commitment to staying as healthy as I can has grown even stronger. I also know that running will help build up my endurance for this cycling season, and in turn, cycling will help with my running. After all, I need the strength and endurance to keep up with the three little ones I’m blessed with taking care of!
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Most of my day today was spent holding my 4-year-old daughter’s hand while she quietly laid in the emergency room hospital bed. My daughter woke up early this morning, crying and screaming for me. She was grasping the back of her head and crying out that something popped. She was inconsolable. I suggested that she must have slept wrong, and helped her change positions (she refused to move).
She settled down just a bit, and I stumbled back into bed. Again, I was awakened to the same crying sound. I gave her a dosage of Tylenol and started the process of deciding whether or not to take her to see a doctor. Two hours passed and my daughter would not let go of her head. She continued to complain of pain. After a brief drop off of one child to a sitter, I phoned her doctor to set an appointment.
No sooner had I hung up the phone, the doctor’s office called right back and urged me to take her to the emergency room in case something neurological had taken place. I quickly scooped my daughter up and hustled to the hospital. The ER doctor suggested a cat scan of the brain and neck. He simply told me in a rather non-emotional way, “I just want to check for anything possibly happening to her vertebrae, or a brain tumor.” Um…or a brain tumor?
This was not the first time these two words have been said to me in regards to my daughter. When she was just 6-months-old, her skull grew so rapidly that her doctor ordered an MRI to rule out a brain tumor. We were her foster parents at the time, and really had no idea what to expect. Thankfully, it was clear. We decided at that time that if the results were not what we wanted, and if she had a brain tumor, we would have continued fostering her. We loved her so much regardless of what the future held.
Throughout the past four years my daughter has complained off and on of headaches, but usually they subside. This one today though was completely unlike any other she had. She literally held the back of her head in her hands all day and would not move. As we waited a couple of hours for the results to be read, I sat next to her, holding her small, soft hand, and just thought about how many other mothers were in my position. I felt fairly confident that the result would be okay, but still, the worry was there. For just a brief moment I pondered the thought of her having a tumor, but quickly forced myself to “not go there”.
The doctor came in and reported that the scan was clear of any tumors, but that the radiologist found an abnormality in the top of her spinal column. They called the neurosurgeon who took a look at it and reported that this was a congenital birth defect with her top vertebrae. Apparently, the vertebrae did not fuse together completely. There is a chance that it could repair itself, but otherwise, it should not be a problem for her growing up, and it did not contribute to today’s events. The doctor advised me to watch her closely, follow-up with her pediatrician, and to report back should her situation worsen.
My drive home was full of thoughts about what had transpired today. Again, I thought about all of the other mothers whose news about their babies had not turned out in their favor. I also thought about my own mother who endured my childhood health problems. I thought about those times she must have held my hand and endured through the sleepless nights of the month I was in the hospital following my hysterectomy.
One would think I should know this by now, but I learned, or better yet, learned again today that our health is not a guarantee. Our children’s health is not guaranteed either. One day we may be holding their hands walking them to school, and the next, we may be holding their hands waiting for test results.
My daughter is tucked in her bed as I’m typing this. She is fine for now, and we are supposed to follow-up with her doctor tomorrow. I’ll end this post with the following thoughts that occurred to me today:
Love your little ones. Don’t take any day for granted with them. Appreciate the moments, however small they may be, with your children. These moments provide the fuel to continue doing the best job we can as a parents. It is also in these moments that we can find subtle reminders of the blessing of children.
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This past weekend I was taken by surprise when an X-ray completed on my son that was intended to evaluate whether or not he had pneumonia revealed something else. The doctor walked into the room and asked if I have ever had any concerns about his heart. As the conversation developed, I began to realize that I know virtually nothing about his genetic medical history. I stood there and felt a little panicked at all that I do not know.
These four words, “I DO NOT KNOW”, are words that I have had to say to medical professionals about both of my children through the years. I get angry when I do not have the answers or clues needed that could assist in seeking results or directing the path that doctors need to take. I know though that even parents who are raising biological children do not always have the answers needed when discussing medical history, and that medical conditions are not always related to genetic history. I mean, look what happened at me!
As an adoptive parent though, I feel very helpless when standing in front of medical staff with barely anything to add. My thoughts go from frustration, to anger, and then to guilt. I feel frustrated for not being able to help. I get angry at realizing that poor choices by my children’s birth mothers could lead to health problems for my children. I also get angry knowing that it is almost nearly impossible for people who have been adopted to find out their medical histories. Often, they have to get attorneys to subpoena the courts to open the record. It is not an easy process at all. I understand protecting the birth family’s and adoptive family’s right to privacy, but when it comes to medical history, adoptees should have the right to know as much as they can.
The guilt sometimes comes from not finding out as much as possible before the adoptions were finalized, or for not pushing for answers from case workers and biological family members if possible. I do not blame the case workers at all (I was once one and my husband is currently one). I just wish getting the information would have been easier. I know that I asked as many questions as possible about their genetic medical history. It seems though that each time something comes up and I do not have an answer for, I feel guilty. Looking back, I wish I would have listed out every disease process and used a yes/no system to ask questions about genetic history.
I was talking to another adoptive parent the other day about these issues and we both agreed that it is different from raising biological children. Let me clearly state though that It is NOT different in the love, effort, and energy poured out when parenting. It is NOT different in the genuine sense of knowing our children are “ours”. But, there are different issues that adoptive parents face. My friend who adopted privately has had to face similar issues. Her son is now an adolescent so she was able to share with me how she has faced some of the unknowns and questions her son has had through the years.
There are many unknowns in adoptive parenting. I do not know if any other significant medical problems will develop as they age. I do not know what my children will think or feel about being adopted as they grow up. I do not know my children’s biological grandparents’ names, histories, or any other valuable information that could be passed on. I have very, very few pictures of their birth mothers and fathers. I do not know if they will look for their birth parents (although I am open to assisting them with this). I do not know if they will get angry for not having more open contact through the years.
My son is okay. It was just an incidental finding related to respiratory issues. His heart is healthy and he is going to be fine. I can relax now. I can stop stewing over the conversations about health issues that I should have had with his case worker and birth mother. I have come to realize that adoptive parenting is an incredibly complex; yet, amazing experience. I am also realizing that I must walk in faith when it comes to navigating the unknowns.
If you are an adoptive parent (especially out of foster care), do you have any nuggets of wisdom you have gleaned through the years that you would like to share? If so, please comment as I am always seeking out ways to understand the complexity of adoptive parenting.
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“Caroline, I learned raising you with all of your health problems that you can’t borrow trouble.”
The quote above is from a conversation today with my mom about my son’s health. A routine trip to the urgent care to make sure that bronchitis or pneumonia had not declared itself in my son’s lungs turned into a six-hour ordeal involving multiple breathing treatments and more doctor’s appointments and testing to come. I’ll know more this week and am really trying to not borrow trouble, but I’m also really good at it. If it was a salaried talent, I would be a “zillionairre” by now!
I admit there is hypocrisy with me in this area. I just wrote a post about not allowing life’s distractions (Distractions, Distractions) to get in the way of keeping focus on the Lord, and here I am just a few days later getting distracted by the “what if’s”, “why now’s”, and tomorrow’s worries that may or may not even come to fruition. I will suggest to others to not fret over what may or may not be a problem. I’ll quote scripture and encourage others to pray, but often I do not take my own advice as well as I would like to admit.
I do not believe that the Lord wants us to fret over situations. We are to cast all of our cares onto Him in good faith knowing that He has already declared the victories in our lives. The walk on this Earth is hard. Our money runs out, our relationships lay in ruins, and our bodies break-down; yet, He never changes.
HE.NEVER.CHANGES
While my mom told me not to borrow trouble, she also suggested to be prepared. Learn about possible conditions, think through scenarios, and be open to the possibility that health matters can become serious. She knows this first hand from raising me. You can learn a little bit more about her in my post titled Mother’s Resilience that I wrote on Mother’s Day. She has always told me to “trust my gut and intuition” when it comes to my children. I feel that this gift is one the Lord has given to women. That ability proved invaluable when she was raising me. Her persistence and determination to get answers played a big role in saving my life during my illness.
So for now, I am going to walk in faith trusting the instinct the Lord has granted me with my children and trusting Him to work out the details. I am going to put as much effort as I can to focus on the hope that comes from the Lord instead of the hap-hazards of being human. Regardless of the outcome, I have comfort knowing that the Lord already has tomorrow’s troubles in His Heavenly Hands.
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
– Jeremiah 29:11
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Have you ever been in a situation that you thought was somewhat insignificant, but ended up finding out that it was quite significant to someone else? I have, and I would like to share it with you.
At the age of twenty, the doctor discovered a Dermoid cyst on my left ovary. My left ovary had barely escaped the bacterial invasion that caused my hysterectomy at age eleven. It was somewhat risky to leave the ovary in my body because of the rapid pace the bacterial infection was spreading, but the doctors decided it was worth the risk.
This ovary became the one thing in my mind that “kept” me female. I know that is quite ridiculous now to say that, but I was so young when all of this nonsense happened. Even at the age of twenty, I struggled with making sense of my “female-hood”. By the time the cyst was found, it was too late. My survivor ovary could not survive any longer. The decision was made to remove it.
The surgery was scheduled to happen on my 20th birthday. Yes,I lost an ovary on my 20th birthday! Before I go any further though, I should explain that I am not exactly a great candidate for laparoscopic surgery. Let’s just say that my insides are a little jumbled around and there is a tremendous amount of scar tissue. All of my major surgeries have been done the “old-fashioned way”; meaning, cutting right down the middle of my abdomen. This surgery to remove my ovary was not any different, so naturally there was a lot of prep work that had to occur before the surgery.
I was admitted to the hospital in the evening and stayed up most of the night before my surgery talking with my roommate. She had her gall bladder removed and was in a great deal of pain. I could not see her as the curtain was pulled the entire time. We were both on pain medication, but talked about our medical histories and thoughts about life in general. Of course, my medical history was a little more colorful than hers. The next morning, she was gone before I got a chance to see her.
About three years later, when walking out of a college class with another student, the topic of my surgery came up. I do not even know why the surgery came up, except maybe to explain my absence from classes. Partly through my explanation of what all had happened, she stopped dead in her tracks, turned to face me, grabbed my arms, and said, “Caroline, You are the one.”
She went on to explain that her very good friend had her gall bladder removed and was feeling depressed and sorry for herself. A young woman was admitted to the bed beside her. Her friend shared that this young woman had been through so much and was still trying to be positive about health and life. She never got the chance to see what this person looked like, but strongly felt the young lady was put in her room for a reason, and that reason was to help bring her out of the self-loathing slump she had been in.
That young woman was me. I do not take credit for any of this. I really do not even remember my exact words said to her or what all I may have shared. Instead, I believe that the Lord placed me there at the right time and in the right circumstance to bring comfort to someone else. The credit belongs to Him.
I decided to share this because of the potential impact all of us can make in the lives of others. What may seem as insignificant events or simple conversations might just end up being exactly the things that someone needs to hear or witness. We are all witnesses of a loving Heavenly Father. He is able to use all of us to share hope, love, and our lives in a way that will glorify Him and help raise up humanity.
So, next time you think that conversation you had with the person standing behind you in the grocery line did not mean anything, think again. You never know how the Lord will use your words to lay out His action to reach someone else.
May the words of my mouth and the meditation of my heart be pleasing in your sight, O Lord, my Rock and my Redeemer. – Psalm 19:14
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The picture above is me during my last week or so in the hospital following my hysterectomy in 1983. I had escaped out of the valley of death . That smile across my face gives no indication of what had just happened but speaks volumes to the God-given resilience of children.
This is the only time I have come close to death. I was in the dying process before the doctors and surgeons decided to perform exploratory surgery as an effort to find out what was happening to me. I learned of this detail about two to three years ago. I knew I was extremely ill but no one ever told me that I was literally dying.
Following this disclosure by the doctor who performed my surgery, I sat there quietly with tears rolling down my face. I was so close to death as a child and never knew it. I grieved at that moment for my parents, family, medical staff, and for myself. Yet, the tears that streamed down my face were not just of sadness, but also of joy over the revealing of His wisdom that flowed through the doctors’ hands and of His mercy that kept me alive.
The Lord is my shepherd; I shall not want. He maketh me to lie down in green pastures: he leadeth me beside the still waters. He restoreth my soul: he leadeth me in the paths of righteousness for his name’s sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over. Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord forever. – Psalm 23
I was in a Christian youth singing group called “The Sweet Spirits” for the first few years following my hysterectomy. The musical director specifically picked my solo to be a rendition of Psalm 23. My mom and other familiar adults got tearful when I sang this song. How apropos this song was. I had truly just walked through the valley of the shadow of death just a year or so prior.
From time to time, this Psalm flows through my thoughts and I find myself reciting it for days. It is rather morbid to think about walking through the valley of the shadow of death. However, as a Christian, it is comforting to know that the valley of death precedes the glory of His Kingdom.
I have been thinking lately that we are in some way always in the shadow of death. One wrong turn, one missed step, one random act, one diagnosis…the list goes on. I want to start living as though I am in the shadow of death, but I don’t want that to be my focus. I guess what I’m trying to say is that I do not want to take moments for granted. More importantly, I hope to live for His Kingdom and for the promise of eternal life in Christ.
There are many things that have died within me along this journey to Heaven. Old habits, lack of trust, thin faith, and disbelief…all of these have passed away so that I can truly have life in Him. The awesome thing about living a life of faith is that when things get difficult, or when the shadow of death seems to be getting closer, one can always look to the Lord and see His mercies through it all.
Lord, help me to see Your mercy not only when I am in the valley of death, but also when my cup runs over, when I am in front of my enemies, when the pastures are green and the water is still, and when my eyes are eternally fixed on You.
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BARREN TO BLESSED 