The More Thankful

We Are More Thankful Than You Are

I love Uncommon Sense. As far as blogs go I think this one is so beyond valuable for families of children who need assistive devices for communication but also for the way the emotions of being a special needs family are communicated. In addition it’s really just an amazing place to learn about communication and advocating for your child. 

Reading the above post this morning reminded me that I do at times feel I am part of the more thankful. I’ve written as much in this blog.  Plus there was the moment not too long ago when I saw Nicholas walk with his new shoe insert, and heard him say it didn’t hurt!!! Walking pain free is something I am certainly more thankful to witness than most. In fact I’ve seen quite a few first steps with Nicholas and I am certainly grateful for all of them. The most recent though might have been the most powerful yet.

Still I don’t think gratitude has a limited quantity or anything. One person having more does not mean someone else has to have less. Most of us could probably stand too look at our lives from a more thankful perspective. Recently I heard Elizabeth Gilbert talking about gratitude on a podcast called You Made It Weird with Pete Holmes. In it she shared some Richard from Texas wisdom which anyone who read Eat Pray Love will love: “A really lame way to feel gratitude is to compare yourself to other peoples suffering. Its lame but it works”.  It is lame. I’ve always gotten a yucky feeling when I suspect someone feels lucky not to be me. And I know it sounds nutty but I have felt it.

Anyway I have tons of thankful moments with my supposedly “typical” children too, as I know most moms do. I mean I am not just thankful for Nicks variety of first step moments…

A few weeks ago Christopher explained multiplication to me so succinctly it took my breath away. Bess will suddenly blurt out sounds and let me know what letter they go with. Charlotte was quite behind in reading just a few years ago and now is on the opposite end of the spectrum. Nicholas participated in a role playing activity at school in which he had to be the victim of bullying. He did great and really enjoyed doing it, which reminds me that no matter what his leg is up to, he has interests and hobbies that he can participate in. I’ve so often measured how well he is doing by what he could or couldn’t do physically but there is so much more to him than that. So. Much. More. 

For that fact and so much more I am so very thankful.

Swimmers Legs

swimmers legs

I don’t think swimmers legs are a thing. It’s just all I could think when I saw this photo. Maybe because he had swimmers ear and that’s been on my mind. When I took this photo Nicholas was diving in and I thought I captured the moment better than this, but then I thought this photo is actually pretty fun.

Tonight was the last home swim meet of the season. Nick swam several events and did it all pain free (to my knowledge). He’s been pain free almost all the time. He’s been doing a wonderful job swimming. He’s been hanging out with friends. He’s been free!

A free summer is what he wanted and I think he is there now. I almost cried watching him swim tonight. I don’t know why it comes over me sometimes and others I don’t think much of it but tonight…

Nicholas has worked hard to have two long legs. Watching him dive and swim really shows off just how long they are.

Overall I love that Nicholas gets to have this amazing team experience. Fibular hemimelia can’t stop a swimmer! The Arden Swim Team is made up of great kids, amazing coaches and dedicated parent volunteers. I don’t understand much about swimming but that doesn’t matter. The kids learn just fine without me being involved in the technical stuff. Though I do try to repeat what I hear the coaches say ….”Chin up! Big arms!”.

So summer is literally moving along swimmingly! My only complaint (and it’s a big one) is that I miss Charlotte terribly! She has been gone for over week already. I am sad she is missing almost all of the swim season. She is also missed by friends which is always sweet to hear, and as sad as I am, I am happy for her to be having her own summer fun with her cousins in PA.

Update:

Here are two cool shots of Nick from yesterday! It looks like the one and only Joe del Tufo captured the moment I tried to. That’s his camera in the corner of my shot! Check out Joe’s gorgeous photography here , we have two of his photographs in our home and I love them! Well two not counting other swim team photos! We are so fortunate to have talented folks in our community willing to share their gifts.

And there’s my boy looking like he’s taking off! I love it and him!!

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“Why does everything happen at once?”

That is what Nick asked me last night. I remember asking a friend that same question five years ago when my beloved Aunt Eileen died and Nick had surgery two weeks later. She reminded me that surgery is a good thing. I understand that now more than ever. Nick’s leg lengthening’s are him moving forward. They are progress toward a goal. They are not bad. Hard at times, but not bad.

Loss on the other hand feels bad and that is what we are facing. Our dog, Monk, is dying. We can’t help his suffering so we are ending his life today. We explained this to the kids last night and right away Nicholas said he does not want to keep Monk alive any longer. He can see his struggle. He understands what we need to do. Charlotte clearly does too. Our evening and night involved a lot of tears. Chris and Bess were less verbal about it. Chris seemed to get exceptionally upset about other things and we talked about the fact that maybe it was really about Monk. It’s so hard.

Bess said she was not ok with either option, suffering or death. She voted neither. If only we could.

I don’t know why this is happening now. I don’t know why life piles it on sometimes. We are trying to focus on the fact that Monk has had a good life and been a great pet. He deserves a good death, if that is possible. He started to seem sick right before Nick’s surgery. It was so hard taking him to the vet and not getting many answers. Now as his symptoms have increased the picture is more clear. His vet who at first had encouraged us to look into oncology told me yesterday Monks cancer seems too aggressive for any of that now.

Today is a struggle. There is no way around it. We will bury our pet. We will speak words to honor him. We will remember how crazy lucky we were to have him in our family for nine years. He’s been the easiest dog imaginable. I have never been the most attentive human to him but he’s always seemed ok with that. Still I find myself wishing I had pet him more, and walked him more, and fed him more people food and just appreciated him more.

So leg lengthening keeps going. I will remind Nick that it is a good thing! He’s doing great overall. His leg is growing like he needs it too. His knee is still going to be our focus for a while. But we have to remember to celebrate the good things and appreciate the great moments we are offered daily. Monk’s loss is a reminder to do that. It is painful for us all but we will celebrate his life as best we can today and always.

I tied to talk to Nick this morning about why everything happens at once. I couldn’t really answer him last night.  His response: “Mom it’s ok, I wasn’t looking for an answer. It was a rhetorical question.”

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Surgery Perspective

I accidentally out-ed myself as Santa. Nick needs a new charger for his computer that “Santa” brought for him and I said I would order it. He offered to bring me the computer so I could order the right one and I said no that I could just check the order. His “gotcha” expression said it all. I could not even speak. I was shocked at myself. When I could speak I said “Did I just do what I think I did?” Nicholas said no, and that he had been questioning for a long time. Something about this still felt so sad to me. I didn’t necessarily think he believed but we all behaved as if he did. Something about keeping up the farce kept it “real”.

Nicholas is growing up. Literally up, up, up but he is also changing in ways I can’t see but I can certainly feel. It is already an emotional week with surgery coming up on the 24th. This Santa business just put me over the emotional edge! I just need a good cry so badly! Nick is also visiting middle school on Wednesday. He has to do an interview for a specific program, which he is really hoping to get into it. It is interesting to have him want something and for me to really not be able to make it happen. Ahh… parenting! Nick, like my other three children, is a joy to parent but parenting comes with such a broad range of experiences and emotions. Minute to minute they change. This is life. I get it. Surgery is the kind of thing that puts it further into perspective. That is a kind of gift in and of itself.

Last night Nicholas also came to me to talk about surgery fears. He knows it is expected to have fears. We talked about the usual discomforts and things that are out of our control. He was happy to learn that he can weight bear some right away. He was worried about getting around within our house.

Nicholas has an amazing perspective for an eleven year old. He decided on the timing of this surgery and I am realizing more and more that he is a part of the team in a new way now. We have to included him in all decisions regarding his care. Being part of the Ethics Committee at our local children’s hospital reminded me of this recently. It’s really easy to think that because he is not eighteen he is not the decision maker but that is just not true and most certainly not ethical.

So Nick is expressing his surgery worries. I have shared some of mine. The rest of the household seems be a little on edge as well. Nick’s siblings worry about him. Their lives are impacted too. Meeting everyone’s needs through it all really has the potential to stress me but I am focusing on one day at a time. Today I had an 8am meeting and later I have a doctor’s appointment but I have dinner in the crock-pot already (Corned Beef…Happy Saint Patrick’s Day!!). If I had more time on my hands I would prep crock-pot meals and freeze for post surgery but I have schoolwork to keep me busy this week. Graduate school and surgery are not the easiest mix but I am taking that one-day at a time too. This weekend I plan to do as much of next weeks work as I possibly can!

I have also accepted the fact that this is simply not going to be an easy season. Limb lengthening is a huge deal. It just is. Even with everything going well it will take over our lives. We will find a new normal for a while. This is ok. We are so lucky that Nicholas has an amazing team at Sinai to care for him; we are lucky that Grandma and Grandpa can come and care for the crew at home, we are also lucky to be so close to Sinai so Steven can go back and forth some.

We are lucky. Surgery has helped me see that. It is a perspective I mostly wouldn’t trade that for anything but of course there are times when I wish Nick didn’t have to go through any of it. No matter how beautifully he does. No matter how freaking awesome he truly is through it all. There is a part of me that just wants to protect him from everything. I think thats just part of being a mom.

My Golden Age

I think I have hit the golden age of parenting (or my personal golden age) and I think I have said so before. My children are 10, 8, 6 and 3. We have been diaper free for over a year. I can’t remember the last time I nursed or gave a baby a bottle (which I do actually miss because I won’t ever stop loving babies). We tossed all sippy cups a while ago. We are safely out of baby/toddlerhood but not into the teen years yet. There is less labor involved in the day to day, keeping everyone alive basic care. What adds and extra layer of glow here is that Nicholas is fibular drama free.

Realizing things are changing, I talked to Nick about this blog and the content I share. We have discussed this every now and then. I don’t want to violate his privacy so I asked him what I could share. There is often not much going on Fibular Hemimelia wise and I like writing about motherhood and life in general. Nicks not so much on board for that, at least not if it’s about him. “You can write anything about my leg but that’s it. I don’t want you to share my personal life.”

I totally respect his choice. I don’t want his classmates coming here and reading about his struggles or challenges and bringing it back to him. I love that sharing has helped Fibular Hemimelia families but with Nick being in a lull treatment wise there is less to share about him.

Back to my golden age. It’s a snow day here. The view from my living room window is gorgeous. It’s afternoon and I have barely seen my children. I can hear them but they have been playing together all day, totally occupied. This isn’t anything unusual but I feel so much appreciation today. I appreciate a hot cup of coffee and a moment to write. I understand that life won’t always be this way. I know not all teenagers end up hating their parents but knowing rougher waters could be ahead makes me revel in the peace and playful joy that is a snow day today.

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***I have begun to feel like its much more au courant to write about how hard motherhood is so we can all commiserate. Motherhood isn’t easy but I think there is a point when negativity encourages negativity much more than understanding and self acceptance (which I think is the intent of the motherhood is hard posts). Maybe I am alone in this but frankly if you are spending most days counting the hours till bedtime, I think it’s worth reevaluating your parenting philosophy. I know my golden post may read as Pollyanna-ish but I have shared the hard moments too and I believe it’s worth sharing joy as well.

Nick’s Thank You Video

This video, which was recorded last night, may seem silly but its message is heartfelt. Nicks eight plate removal surgery went well. He had his last dose of pain meds Saturday night before bed. Nick is free of metal, except for his braces and even those will come off in less than a month. He’s moving around tentatively but feeling well.

Nick was really calm before surgery and woke up calm. Hopefully we will be back in Baltimore soon for a replacement brace for the trial. Nick said it was helping and once it cracked he said the “push off” it gave him was gone. Good news really.

If I don’t write again, happy holidays and happy new year to all our readers and followers. It is a blessing to have Nicholas in your thoughts and prayers. It is a blessing to know writing this blog has helped others. For the new families, as always, please be encouraged! 13 surgeries down and Nick doesn’t feel like he has had a surgery filled life. He feels grateful! He thanked everyone he could on Friday, even me. “Thank you for bringing me mom”. As if I would have had it any other way.

The Girl With Two Fibulas

I try to keep the blog topics fibular hemimelia related, so I don’t end up sharing a lot about Nick’s siblings. Charlotte came home with a work sheet called The Back to School Times, same as Nick did (which I may have only shared on the Facebook group and not here) and hers is no less beautiful.

Words that describe her: artist, friend, sister, nice, runs, swims, fun, family… Favorite things to do: art, swim, see my cousins… Things she’s most proud of: Swim trophy, girls on the run, not crying on the first day of school (she is way braver than me) & making friends. Something special about me: I am on a swim team. This is the art work from the back of her paper which she wants to finish when she comes home today. 

Artwork from the back of Charlotte's work sheet

Charlotte is all of those things and more. Right off the top of my head, I would add beautiful and smart… I think I need to tell her these more often so she will list them too. Then again I like that she might not have listed them because she does not see those as the most important things… I may be overanalyzing, just a little bit.

This work sheet is another glaring reminder of how powerful the swim team experience was this summer. It gave Charlotte so much confidence. I still choke up when talking about it. After my last swim team post, which was so well received in our community, I had to cut conversations short, because I really would have cried. I was so proud of my children and grateful to our community and the swim coaches!!! My kids are so proud to be Arden Sharks!!!

While Nick received and earned the trophy for most improved, Charlotte went the farthest emotionally for sure. She would not put her head in the water at the start and by the end she was going off the diving board! She conquered her fears. I was chatting about it with another swim team mom (who supported us a whole lot this summer) just yesterday. I knew I was not the only parent who enjoyed watching my children transform, still it is wonderful to hear.

Charlotte is so compassionate. Apparently having two fibulas does not hinder compassion one bit. I thought Nick had cornered the market there due to his experience having fibular hemimelia. Though that’s not really true. Charlotte has always been empathetic and kind, always thinking of others.

Charlotte asked last night if she could bring two snacks to school each day for afternoon snack because there is a classmate that never has one. She said that she and some other kids share with her but she would like the girl to have something of her own. She also noticed a boy in class only eats two containers of applesauce for lunch and was really worried. It turns out he has a sandwich and chooses not to eat it. Charlotte had really wanted to bring him a sandwich because she believed he didn’t have one.

That’s my girl. I could go on. I will post about her again in the future. I think it actually does help fibular hemimelia families to see that siblings of fh kids do well too. Even in a big family like ours. It might be hard at times (which Charlotte has let me know) but over all, just like with Nick, I believe that fibular hemimelia gives more than it takes.