Natalie has had LOTS of genetic testing. There’s never been a diagnosis that encompasses more than one or two of her … issues. I remember her old neurologist – back when she had seizures – said he was sure she … Continue reading
Whew.. life is hard. Life as a parent of a child with special needs is harder. Ongoing caregiving of medical needs is hard. Whether it is therapies, assistive devices, g-tubes, trachs, seizures, wheelchairs doesn’t matter. It is hard. Very hard. It is exhausting and lonely. It is wearying.
Weary is defined as exhausted in strength, endurance, vigor, or freshness; having one’s patience, tolerance, or pleasure exhausted. Well now that we’ve straightened that out (as if we didn’t know) what do we do??? Burnout is not an option when it is your own child. You gotta be there.
I have found two important tools for myself. I’d love to hear what you do….
First, I get out. Alone. I walk around the block, talk to no-one. I am an extrovert, but walking around a pond by myself not even trying to think is amazingly helpful to me. I don’t even understand why. If I cannot get away from the house by myself on a given day, I go out on my deck and hide from everyone. I have to find a spot where I cannot hear the voices of anyone I know. It is so peaceful.
Second, and this is the one I hate the most, I grieve. Yeah, cry, and get all puffy eyed. But first I recall all that I am dealing with, all the duties, all the disintegrated dreams, all the losses of every kind. I want to grieve specific losses.
Grieving seems wrong somehow: “I should be grateful.” “Does this mean I don’t love my child?” “Other people have worse situations.” Yes they do. So what? That’s my honest response. This life with its shattered dreams and heavy workload is not anything like what I envisioned. It is filled with hardship and that is the truth. A scale that measures the magnitude of your grief does not exist.
Yes my daughter is delightful. Yes I love her like crazy. Yes she makes me laugh and I enjoy spending time with her more than plenty of other people I could choose to be with.
- No she will not ever be able to tie her shoes.
- No she will not ever be able to feed herself.
- No she will not ever be able to multiply numbers.
- No she will not be able to clean her own feeding tubes and syringes.
- No she will not be able to manage her own health care.
- No she will not be able to have children and raise them.
- No she will not ever be safe on her own.
How can I not cry about that?
Yes I still have lots of fun in my life. Yes I have good friends that I adore. Yes my husband is a wonderful man. Yes my other kids are fantastic.
- No I will not ever stop worrying about her.
- No I will not ever be an empty nester in the truest sense of the word.
- No I will not be able to go back to school later and pursue another line of work.
- No I will not have the freedom in the later years of my life that would allow me to travel, etc.
- No I did not choose this life I am living.
Is it wrong for me to be sad about any of that?
No. I don’t think so. To deny emotions is to hold onto them. They don’t evaporate. To express them is cathartic and cleansing. Only then can I, can we, take a deep breath and continue on in this life we’ve been given. Only after the catharsis can we help our wonderful brains take over and say “I love this child. I can do this.”
Sometimes it doesn’t feel like we are living life. Sometimes it feels like life is living us. That we are the power source for the lives around us. But we are more than batteries. We are more than the pedals on a bicycle. We are women (usually). We are strong, dedicated, emotional women.
Whether anyone else sees it or not, we are heroes. Even heroes need time to themselves and a place to let tears flow.
Beginning at 5 months of age, my sweet baby daughter had trouble gaining weight. Everything seemed to go well until that point. Four ounces of weight in one month was a huge concern to me. Her primary care physician thought she was just going to be tiny! He told us to come back in 3 months! This was unacceptable to me, so I scheduled a follow-up appointment for one month later. BEFORE AND AFTER PHOTOS HERE
At that appointment she had gained only 1 ounce (instead of 1 to 2 pounds). The doctor stuck by his assessment.
Second and third opinion physicians used words like wizened, malnourished, failure to thrive, etc. We worked with a lactation (breast-feeding) consultant for a few months without progress. We were then referred to a physician at a major children’s teaching hospital. That physician was the head of their diagnostic clinic. This seemed like great news!
He was certain I was too old to nurse (43, so yeah not 25) and started daily naso-gastric tube feedings, since my daughter (now 8 months old) would not take a bottle. She still did not gain weight. Eight months later, the results had not changed despite numerous appointments, tweaking the program, testing and time.
For reasons unknown to us a surgeon wanted to talk with us. She recommended a g-tube, and said our daughter was slowly starving to death.
The diagnostic clinic doc said it wasn’t necessary, that there was still time to work on the n-g tube. We opted for the g-tube insertion. When our daughter’s surgical site would not heal the surgeon had us move to a picc line (which failed 4 times) and eventually a central line. Our daughter then gained weight like crazy on hyperalimentation feedings (intravenous feedings that bypass the digestive system and are dumped right into a chamber of the heart). After 2 months the g-tube site had healed and our little miss looked like a cute little chubby bunny with all her weight! See the before and after photos here.
During this time we entered the early intervention program (dept of education program for at risk 1 – 3 year olds), and began seeing an occupational therapist, a speech therapist, a physical therapist, and a developmental therapist.
The O.T. said our daughter had sensory integration disorder (now sensory processing disorder.) When we provided research on SPD to the diagnostic clinic physician and tried to discuss it, he refused and even said he would not read it. He thought we were indulgent and foolish and referred us to a child psychologist. He believed that was the only logical cause of the refusal to eat. Subsequent feeding clinics in different parts of the country have said otherwise.
The primary care physician and the diagnostic clinic physician each made significant errors in diagnosis and treatment. Our daughter has suffered much as a result of these mistakes. Unfortunately, there have been additional mistakes since that time. Some clearly avoidable. We have also acquired three new docs on our team who have been OUTSTANDING!
The thing I have learned from this is to ask lots of questions, write down the answers, the treatment, record statistics (weight, etc.) and get second or third opinions. I trust myself as Advocate In Charge more than I trust the medical doctors. I do not believe their intentions are malicious, but I think there is a problem in the system. Doctors are extremely specialized now and there is no Physician Who Knows Everything to oversee a complex case.
I never leave my daughter with anyone else while hospitalized, other than a trusted and courageous family member. I take the position that I am in charge. Anything that is done to my daughter has to go through my permission process first. I am courteous, professional, and good-humored. Also tenacious. It has paid off. Hospital staff has been surprised at times, but my daughter has received better care since I have become so proactive.
See my posts in Free Stuff (above). The keep asking questions and fear posts have questions to ask the doctors and suggestions on how to deal with the fear that naturally accompanies complex medical issues!
My girlie-girl is doing quite well now. We are grateful and happy!
It has suddenly become one of those weeks. I was coasting, doing so well that I let go of the handlebars. I put my hands in the air.
Then I lost my debit card.
And she vomited again.
And her mouth hurts A LOT! And she will not let me look in there. Holding her down to look into her mouth as she fights me just doesn’t enable adequate examination. I talked to the dentist last night and got suggestions. I decided NOT to go in today as her pain seems better. But now its bad again.
And she is freaking out about an upcoming (unfamiliar) field trip. Daily. The field trip is more than 2 weeks away! Short of actually visiting the zoo with her, I cannot assuage her anxiety. We’ve watched videos of the zoo, looked at it on google maps. I’m out of ideas.
And her appointment next week with the dentist just got rescheduled to 6 weeks from now because the dentist has to be out of the office next week!!!!
Okay. First things first. Debit card. Be back soon.
Have you ever noticed that marathoners see success as finishing the race? My mother used to go on 35 mile bicycle trips. Never did she talk of first, second, third or fortieth place. Just the experience of the ride. I need to look at life that way. I haven’t lost the race. In fact I cannot lose the race.
I have five children. The first four are quite bright, if I do say so myself! They are also responsible, loving, kind, good-humored, humble, curious, playful, athletic,
obsequious and clairvoyant just the best in nearly every way! Of course, that is my completely biased opinion. I have enjoyed their development and success. It has been a source of pride and confidence for me, raising these lovely kids. As a parent it is reasonable to feel competent having raised children who contribute to society in large and small ways, who pursue dreams and love.
The struggles of child number five have threatened my self-image.
My 10 year old daughter has sensory processing disorder, as well as other undiagnosed issues. It is easy to feel like a failure as my child struggles with things so many of us take for granted. She cannot tie her shoes. She cannot eat enough to sustain her own body. She cannot write legibly. She has unpredictable medical catastrophes every couple of years. She will never live independent of supportive care. She understands enough to know she is, as she puts it, “slow”. There is so much she does not understand. It is beyond my power to change any of this.
As her mom, it is difficult to not take responsibility for her limitations. “What could I have done differently to avoid this?” rolls around my head, unbidden, sometimes accompanied by “Life is horribly difficult. Too horribly difficult for me to have any hope.”
One of the keys for me is to recall my areas of competence:
- As powerless as I feel at times, her present condition could be much worse without my care. In fact, she may not even have survived to this point!
- She knows she is loved. She is happy and playful. In the midst of her struggles, and mine, she brings joy to our family, our neighborhood.
- I have wonderful relationships with my other kids.
- I have wonderful friends and family.
- I have interests and hobbies that challenge me and bring me joy.
- I have overcome hardships and struggles without losing my sanity or joy.
No, everything in my life is not rosy. But I am alive, happily! Each day has new opportunities and new blessings, not just difficulties. Reviewing my competence opens up my tunnel vision. I again see that I have a good life. A very good life. Yes, it has challenges. Big ones! If I inhabit a single day, not yesterday nor tomorrow, I am competent to handle this life I have. With joy!
I can continue in the race knowing I am successful, I am competent. Actually I cannot lose.