Saturday, November 26, 2011

Thankful...but in need of some writing therapy!

This Thanksgiving I am thankful for so many things. A wonderful and delicious Thanksgiving dinner prepared by my brother-in-law Rick and his wife Debbie...oh and I can't forget Katie (our bride to be). I am thankful for my husband, my children, my extended family, restored health for Sam, my friends, my "always available to pet" dog, my blog and listserve friends and so many more things that it would take my whole post to list them all. I know I am living a very blessed life.

And yet...I find myself needing some blog writing therapy. My last couple of weeks have been filled with Sam's medical issues. We spent four days in Children's Hospital with pneumonia and another illness, we had follow up doctor appointments and an appointment to go over Sam's lab tests (that will be a whole different post). I've spent hours on the computer researching Perthes, Perthes treatments, doctors and a whole host of metabolic issues.

In between, I have tried to restart Sam's home program, jump back into his homeschooling, spend some much needed one on one time with my other two children, watching movies or going out to lunch, going out with my husband, trying to stay connected with friends, attack yet another house cleaning and clearing project (something that happens regularly to anyone who homeschools). I know many of you are under the false perception that because I am home so much my house should be spotless. Ummm....NO....because we are home so much our house is in constant use...there is no down time while we are off at work or school. My work, school and therapy is all done in my house. I often feel the need to have the house vacated so I can attack the cleaning but it only takes a matter of hours for Jeff and Ben to leave a mess on the floor from their work boots, or for Ben to pile up his layers of filthy laundry (I'm thrilled he has such wonderful work ethic...I just wish it was a cleaner work ethic, but that wouldn't be Ben). Add Danielle's YMCA bag, volleyball bag, school backpack, 17 pair of shoes that seem to all have to be stored in the kitchen. I guess if she needs a much needed, last minute shoe change...she can weigh in all her options. My house feels more like a locker room or a teenager's really messy bedroom than my home.

And I'll admit I'm guilty of needing some downtime to read my book for book club. If you haven't read the Hunger Games should. I'm hooked. And yes, I tend to get addicted to the Hallmark Channels Christmas movies along with wanting to work on my afghan knitting project (you know I needed that because I don't have much to do anyway). And honestly knitting relaxes my brain because I use the knifty knitter and I don't even have to keep track of my stitches, just my rows. And I am guilty of having fun with Sam, going places, playing together, snuggling and watching a movie, extended games of air hockey...I mean it can't be all work.

I consider all this my balancing act...because if my mind is not consumed with something I tend to think too much and then worry sets in, self-doubt follows shortly thereafter, second-guessing becomes my best friend and I know I need to sit down and write it out. So, what has me tied up in knots???

Deep breath.....Sam! When you are raising a child with special needs the balancing act of staying positive and dealing with all the medical, special needs stuff is one of the toughest balancing acts there is. This is my little boy, my baby, a child whose smile brightens my day but it wouldn't be right if I just told you all the great stuff about Sam. It wouldn't be honest if I told you that everyday I find the blessings. Because if I'm really truly honest...some days are much tougher than others.

An analogy that comes to mind with the upcoming winter season is snow. Sam's issues are like snow and I'm the big old snow plow. I have had a tune up (road trip vacations), I am an older model but I'm still responsible and in good working order (well, don't ask Jeff that) and I know that my responsibility is removing the snow (helping Sam reach his full potential). Well, we started with a dusting of snow (Down syndrome), but then the accumulations began to increase (brain injury, dysphagia, respiratory/immune issues) add in the blizzard conditions (bi-lateral hearing loss, homeschooling and a home program) I begin to feel the strain. But then along comes the ice storm that really challenges my stability and traction (Perthes & hip dysplasia) and this old snow plow is quickly breaking down. I know it is time to shift into a lower gear, ask for help and realize that slow and steady is often the way to go.

Now let's throw in the holidays. Argh...and the sad thing is...I love the holidays. I can do this...I know I can. I often feel like the little train that could, except on some days I'm missing a few rails from my track, on other days I'm flying over the mountains at record speed and yet on other days I can't even find the track.

My latest plunge into the dark side of raising a child with special needs came as I was doing my new research on Perthes. When Sam was diagnosed I thought I spent enough hours trying to figure everything out...I felt we were making good informed decisions about his treatment. I networked, I asked questions, I went for 2nd and 3rd opinions, I followed my gut...but I had early on opted out of one of the proposed treatments. The External-fixator. This option, frankly...scared the crap out of me. Although I listened to parents tell me about the good outcome, I couldn't get past the parents that talked openly and frankly about what it was like going through it...and they were talking about typical children...not someone like Sam. To many of them...out of state surgery was difficult...for Sam I felt it was impossible. Many of the parents felt overwhelmed by just the surgical procedure and recovery...I have to add in Sam's issues with anesthesia, his respiratory/immune system issues, his difficulties with communication, his low tone, balance, sensory and joint issues and the list goes on and on.

Okay another deep breath...but as I continue my research, since Sam's current outcome is not looking favorable, I have had to re-evaluate the External-Fixator. As I listen to Dr. Paley's video presentation at I notice he answers many of the questions I have today and have had all along and I can't help but question why I didn't listen to this before Sam's osteotomy surgeries. Yep, the second guessing is alive and well. I immediately begin the thought process of what if...and would our outcome be better and then I go into the darker, deeper areas. If we would have done this surgery first, Sam would have only had to go through one surgery, not the two to three we are now looking at. The surgical process and recovery would have been more difficult than the surgery he had....but at this point we may have to have him go through it anyway on top of an already difficult surgery and recovery from the first surgery. Yep...that's where the thoughts in the head start to cripple the heart. I could have saved Sam the challenges of the other surgery had I been able to wrap my head around this surgery.

But...maybe that's my answer...maybe I had to go through the first one to let me know that Sam and I could make it through the next one. Maybe we were building our strength and stamina, our Sam only procedures and medical knowledge, our love and trust in each other and our faith and abilities. But there is that "maybe" word...which can take a spin in either direction, depending on the day. Sometimes I feel stronger and sometimes I sink into the "Why didn't I just go there the first time and save Sam the first surgery and recovery...why didn't I do what was best for my child?" There I said it. That's what really hurts, that's what I could beat myself up all day about...feeling like I failed Sam, like I made a wrong decision, like I put him through something unnecessary.

Now go ahead and try to tell me that God only gives you what you can handle and that God gives special children to special parents. I'm not special...I'm just like you, I'm an average person put into circumstances that are above and beyond the normal and I have to make decisions and choices that I hope most people will never, ever face. I haven't been given any super powers but I was given an amazing child. A child that teaches me humility, sacrifice, unconditional love, devotion, he challenges what I think and know about myself, what I think or thought I could do and he strives to teach me patience, persistence, thinking of others before I think about myself. Some days I'm a good student and some days I would be better off skipping out.

But then I have to stop and remember that I don't have all the answers, that I ask every day that God guide me on this journey with Sam, that I rely on my gut and at the time that is what my gut was telling me.

It's time to write these worries on paper, put them in my prayer box and leave them up to God. Yes, this is another of my coping strategies. I have a wooden box and on the inside is this verse, "When your head starts to worry and your mind just can't rest, put your thoughts down on paper and let God do the rest." I feel better when I write and I feel much better when I write my worries and concern on paper, put them in the box, close it and pray that God helps me work through each one. It's my way of emailing God.

Another deep breath...but this one comes easier.

"Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved."
Helen Keller

Oh dear Helen, you definitely knew what you were talking about. Have a great weekend everyone!


  1. Dear Sue:
    I have been praying for you and Sam's hip issues...When I have experienced the 'should have done/not done syndrome, I remind myself of the fact that I prayed about that thing intensely before I had made my decision. I have to be able to remind myself that I asked the Lord for help in deciding what to do, and that He being the kind, good father that he is, through his Holy spirit help us make that decision. He could've made your impression of an external fixator be different. He could've had the 2nd and 3rd opinions all point that way. He didn't. So, it might have been about giving you and Sam more experience/strength to do the second surgery by going through the first one.
    I have also found that there is sometimes no explaination why things happen. My husband and I have had some very difficult things happen that we have had to say that it must have been for someone else's benefit/learning that we have gone through those things. We have waited on the Lord to teach us what we needed to learn in that situation and we find nothing....not that we have arrived by any means!! Sometimes things are just inexplicable. His ways and thoughts are higher than ours (forget the reference on that verse) and perhaps what happened to us was really about some other person involved in the situation.
    I have many years of experience as an orthopedic nurse, so know about external fixators from the hospital side. Will be praying intelligently for you and Sam if you go that route.
    You are a blessing to me. Praying the Lord will be your strength and encouragemtent through the busy time of the holidays.

  2. Thank you for the comment above. I needed to hear that and you are right I prayed and asked for guidance the first time around. Thank you for your response!!

  3. You said it all. Putting our child through all of this causes the greatest confusion in our lives and I am sorry to see you have to go through it. Thank you for taking a moment for me when I needed it... I wish I could offer as much. My prayers will be with you and Sam through this.

  4. Sue, the day you posted this I followed the link and watched the video about the surgery. Wow! That is a big one!!! That has got to be a tough decision! The next Mon., Justin had an appointment with his pediatric orthopedic doctor who sees him once a year to keep an eye on his slight knock-kneedness. When he was describing the surgery Justin may eventually need as a simple out-patient proceedure, the contrast to this surgery was on my mind. So, I told him about someone I know who has a son with Perthes disease and about the surgery you are considering. He told me to tell you to ask your surgeon for copies of the Pub Med research on the External Fixator. I'll bet that would be some heavy reading! But he felt it was important. Anna

  5. Hi Sue,
    I know that you posted this almost a month ago, but your words fill my heart! The definition of hindsight is...Understanding of a situation or event only after it has happened or developed:
    You, my Dear Friend, not only inquired, researched and verified information, but most importantly... you prayed for guidance.
    Never underestimate your decisions when they have been placed in the hand of the Lord!
    Think of this fabulous, challenging, yet stimulating and memorable summer you had... could that have been possible if you dove directly into this intense surgery?
    Would you have guided another parent in the same situation to have denied the original surgery that Sam had to go directly to this one?
    Sue, you are my teacher, you are my mentor, and you are my friend. Although we know each other primarily virtually, a couple of old time conversations on the telephone, I respect you dearly! Please don't ever doubt yourself nor the decisions that you have made in the past or present for Sam. You have taught me that every decision that has been made is the right decision for that time and place!
    You, Sammy and God have control over this issue with Sam's hips... You will always make the right decision and never doubt the past.
    In peace and friendship and a healthy and fabulous 2012!!!
    Raquel and Noah

    A4cwsn needs your vote!!
    Last few days to vote for 10 Special Needs Children to get iPads to help them! I hope you can get a minute to go vote, and don't forget to verify your vote! Pass it on!! :) Thank you!