I’m reading a new book titled The Shape of The Eye by George Estreich. What an excellent book! He is the father of Laura, who has Down Syndrome. Feeding issues are present throughout, along with an honest (without being discouraging), factual, … Continue reading
Here is the link to my article published in Complex Child Magazine.
It is called “Living at Natalie’s Speed” … I wrote it as a reminder to myself, and to anyone else who needs it, that one of the positive aspects of our special needs family member is the necessity of slowing down. I normally live at Mach 10, but with Natalie, life goes much slower, and I am actually happier that way. Life is sweeter at a slower pace.
That being said, I just started a job today. We’ll see how that mixes in!
We’ve been through a few ecstatic weeks that I had hoped would not end. As the parent of a child with special needs, specifically sensory processing disorder that requires us to feed her through a gastrostomy tube, I always hope that any progress we make will be permanent! Like playing a video game, running, annual salary, I want (expect?) each score to be better than the last.
Real life doesn’t operate that way, at least not that I’ve discovered! That seems to be especially true with my daughter, Little Miss, who has been fed by g-tube for 10 years now and has battled different health issues throughout her life thus far.
Three years ago we had a major health crisis to weather and after 18 months, the cause was finally determined, surgically repaired and cured. Now that three years have gone by, I try, TRY, to not wait for the other shoe to drop. Her health has been quite stable and for that I am SO grateful. I hope it continues this way! But I know better than to count on it. I try to just live in today and enjoy what today is, rather than hoping or fearing what tomorrow will bring.
In recent weeks Little Miss has been, HAD been, eating more and more by mouth. I was generally skipping a g-tube feeding each day. What fun! I didn’t get so crazy as to think there was an end in sight, but I was hoping the progress would continue.
Alas, perhaps all growth is cyclical. Picture a tire with a bright red mark on one spot. As the tire moves forward the red mark goes up, over, down, around, over and over. So while there is always movement, sometimes the red mark is up and sometimes it is down. Sometimes the mark is DOWN while the tire moves forward and sometimes it is UP while the tire moves forward. Ups and Downs.
Seems like an awkward picture of growth – or change – or time. In my experience it really goes that way. Sometimes when I think things are at their worst we get over a bump in the road and it is clear we were moving forward all along.
Little Miss used to have seizures. The seizures were horrible to witness, but they came to an end and she slept afterward. A really strange effect of the seizures was that something in her brain would work BETTER after each seizure. Ups and Downs.
This is true with reading as well. She can startle me at times, picking out words that I would never have guessed she could read. But. She cannot read an entire sentence and she cannot write legibly. Ups and Downs.
Little Miss still asks for food, still says she is hungry, but she is much less likely, this week, to eat enough to skip a feeding. Sometimes she can only look at the food and not eat a bite. Maybe we’re just at the bottom of the cycle and we’ll be back on the uphill side soon. Or not. I don’t know.
I do know that the tire hasn’t gone off the road and into the ditch: she is healthy, curious, growing, funny and sweet. I am determined to enjoy this journey with her, for however long it lasts, and not count on the highs staying high or fearing that the lows will stay low.
Easier said than done. I couldn’t do it alone. Fortunately I have my Companion with me every day to help me on this journey. He has changed me so much through this and surprisingly, I have discovered that this journey is much more of a blessing than a “curse”. I would never have guessed I could ever say that. Today I can. With His help, tomorrow I will be able to as well.
This is a short video and it points out that all of us have something beautiful to offer. Whatever our limitations, whatever our kids needs, there IS something of beauty and value that comes from within us – planted there by God.
Yesterday Little Miss and I were at the doctor’s office verifying that she has strep throat. After the exam we walked out of the exam room and the two docs were standing there in the hallway. Little Miss broke out in song and dance “move like a funky monkey” – eliciting smiles and laughter from the docs.
This is a pattern throughout her life – the joy coming from her is infectious and a gift to everyone she shares it with!
You and your child have that something as well! If you don’t know what it is yet, you will!
Clean the syringes, make the food, check the tubefeeding groups, journal, blog, doctor appointments, feeding schedule, life skills, anxiety management (hers not mine), nutrition, sensory exercises, loose teeth, transition to junior high…
the list goes on.
I’m tired of focusing on it, of managing it all. Tomorrow I am taking the day off. I just don’t want to think about ANY of this stuff. Just for one day.
or maybe a week.
Looks and questions. Curiosity. Little Miss gets fed via g-tube in public quite a bit. Medically it is the thing that keeps her alive. She has some “disabilities” but the only chronic threat to her life is her feeding limitation. Kids look – with their little open faces – they don’t hide their curiosity. Adults are respectful (generally) and not invasive. Of course we make quite an appearance – a “giant” syringe, a tube going to her stomach, up under her shirt, and this container of what looks like pea soup on my lap.
I’ve come up with a short answer to the looks and to the questions: Her brain played a trick on her mouth and her mouth thinks it doesn’t like food.
I like this explanation. Kids and grown-ups alike “get it” and it is a short answer that doesn’t embarrass my daughter and even helps HER understand it more. It isn’t her fault. We’ve done everything we can and we haven’t made any significant progress. I wish it were otherwise, but meanwhile we have to be able to put it in perspective and shrink it down to an understandable explanation.
Change is a constant, isn’t it? I don’t usually MIND change, but when the change isn’t a “positive” change I have to deliberately and consciously manage the change to keep from getting discouraged.
As we continue to slog through the economic downturn I’ve reached a decision. Our weekly trips to the horse barn are going to stop for a while. Little Miss gets three therapies on the same day each week at the barn. I have seen improvement in her physical stability, her thought organization, cognition and conversation continuity, her visual scanning and fine motor skills. Her big brother goes out with us and has been taking riding lessons. They both LOVE riding and being around the horses.
As the steward, or manager, of the household I have to make decisions I don’t always enjoy. However, to parent kids – one with chronic complex needs – seems to require a particularly sagacious management style. Conservation is required. I have to conserve energy, my own primarily. A reserve of energy is necessary in order to handle whatever each day brings. There are always unexpected events (medical or otherwise) that drain energy and patience. I have found ways to make our durable medical goods last as long as possible (link here). I monitor what we expend and attempt to not overdo (or under-do) anything. Of course you have done this as well- whether it is related to activities, commitments, finances, energy, leftovers, clothing, vacations, etc.
Little Miss has been on a countdown for 3 weeks leading up to the last trip to the horse barn – next Wednesday. She seems okay with it so far. I know there will be a grieving period and some anger. I have to conserve some energy and time to help her through her process. Otherwise I become quite impatient.
I have managed to make a decision to change. I’ll have to manage the process and the results and the potential change of this decision at some point in the future. I’ll have to manage my own energy and emotions as well. This parenting job is all about change and management. SAHM maybe should be changed to SAHMHM: stay at home mom and household manager!
Nearly all these definitions from Merriam-Webster Online seem to apply!
Main Entry: manage
to handle or direct with a degree of skill: as a: to make and keep compliant <can’t manage their child> b: to treat with care: <managed his resources carefully> c: to exercise executive, administrative, and supervisory direction of <manage a business>
to work upon or try to alter for a purpose <manage stress>
to succeed in accomplishing <managed to escape from prison>
to direct the professional career ofwell that last one isn’t pertinent YET – who knows?!