A Matter of Perspective

Our circumstances, and what we make of them, really are a matter of perspective. I was reminded of this lesson a few weeks ago and then again this weekend. I know of a family in our community who has several children with series medical issues. I am talking about Sarah size medical issues multiple times over. I think about this family often, especially when I am feeling down in the dumps about Sarah's condition, because we are the lucky ones, my family and I.  I need to be reminded of that more than I would like to admit. We don't have several diseases we are battling - we have one. I (and we) are strong enough to handle one disease. I don't think I could handle more than one. I hope I never ever have to find out.  It would  behoove us to carry ourselves with grace and dignity because I imagine that this family (or any family with multiple children with medical issues) would give up a lot to be in our position. To some people, those maybe with no serious medical issues, might see our family situation as a curse. They might see our family situation as such a sadness. Me? I see it that way too sometimes, but then I think about those (and they exist) who have it worse off than us, and I am reminded that my family really doesn't have it that bad. A change in perspective makes all the difference in the world. It wasn't until  Sarah was diagnosed with MS that I realized how good we have it now. It wasn't until the dark days fell upon us that I was truly able to see how lucky we are.

The second situation that really brought about some serious thought was an evening out recently. I finally decided to stop hibernating (there will be another post about this in the future), and go back out into the world. I went out for a beer with some friends and heard some of the saddest stories I have ever heard. Stories about conflict and violence. Stories about family discord. I took these stories home with me and thought them over and over. I thought about how we all carry stories of sadness in our hearts and memories, and that no matter how sunny a person's disposition that sadness still exists deep within. I also thought about how lucky I truly am. I definitely have had sadness in my life, but really I have it pretty good. In fact, I have it really great. My kids have it even better. They have two parents who are completely involved in their lives who not only love them, but love each other. They have two parents who don't scream at each other and spew hateful words back and forth between them. My kids have never witnessed parental violence because it doesn't exist in their home.

The sadness that we have isn't born out of shame or hurt or violence or mistrust or lies - the sadness that we have is that our lives have been altered by a disease that could permanently negatively impact our daughter's/sister's life. That is a sadness, although I wish we didn't have to deal with it at all, is definitely manageable. It took a devastating illness to see that, but we still see it now none-the-less. Life truly is a matter of perspective. How I choose to see my situation in the world will affect not only how I live my life, but how my children live their lives. I know that sometimes there will be dark days, but over all I know deep inside that we are the lucky ones.

The Turning Point

Photo courtesy of: google.com

A New Kind of Day

With Sarah having trouble with her eyes again (she was able to see a bit better before bedtime last night, so that is good news) I started to think about something that has stayed with me since the moment it popped into my head. The question is this:

If Sarah only has a little bit longer with her vision, what would I want to show her? What would become the important things in life?

 (Now, please, please, please understand that this is not at all what I would like to happen. I would give up years of my own life just to allow her to have the ability to see, and even better, to be able to see clearly, for the rest of her life. I just think that in all that we have been through these last 7 months I need to be able to look at this situation from all angles.)

Bob suggested that we take this week and just have fun. So we are because, you know what? Diagramming sentences are not that important. Learning Latin is really not that important. Doing worksheet after worksheet is, guess what? - Not that important. It's really not.

Yes, there are some school related things that we will be doing because I don't want the kids to stop learning, and some of their book work is important to me. So we will continue to do some of that, but I don't want to look back and regret any of my choices that I made during this time in terms of what I did and what I could have chosen to do. I don't want to bog everyone down with pointless paperwork when we could have instead chosen to read together snuggled up on the couch or put on plays or made forts or baked together or played hide-and-go-seek.

Instead of hour after hour of work - that I am not sure is even very relevant in the adult world - we are going to take a new approach for a while. It is scary for me to take this approach because some of our learning will not be visibly quantifiable. I am the type of homeschooler that wants to be able to show everyone what we have been doing. To be able to produce papers upon papers so that everyone knows that I am not a slacker homeschooling mom who let's her kids run amok while she watches Oprah eating Bon-Bons.

If this recurrent vision loss is telling me that my time to show my Sarah the world is limited I want to make sure that the memories stored in her mind if her world goes black are full of color and beauty. Doing paperwork on diagramming sentences is going to produce neither of those things in her minds eye.

For the time being, this is what our life will look like - unstructured media free time together - playing, laughing, and loving on each other.

Ingredients for making play dough.

Elizabeth - working on her puppet.

Andy in his land of make believe.

Lego fun in the sunlight.

Our favorite new series to read out loud.

Gifts from Christmas.

Josh helping Sarah make play dough. 

Miss Elizabeth finishing up her puppet.

Making play dough.

Sarah working on her puppet. 

Josh trying to work on his puppet.

As Simple As That

All it took was a nap. A simple nap that was supposed to make her feel refreshed instead changed the landscape of her vision yet again. Sarah came home from Josh's indoor soccer game feeling tired, so she lay down on her brother's bed and took a nap. When she woke up she said that her black dots were gone, but in its place was blurry vision. The kind of blurry vision that, if taken to the doctor, would put her back in the hospital. Sarah has asked us to hold off, and let her be for a few days so that she can see if she can recover her vision again on her own. We know that with Optic Neuritis steroids are not imperative to getting her better they just help to speed up the process. Because she is now having issues with the steroids (hair loss, high blood pressure, etc..) Bob and I are not about to rush her to a facility that is going to give her more of the same (steroids/IVIG) when after four attempts to put this issue to bed nothing is working.

I can feel myself teetering between having a positive outlook and facing these seemingly insurmountable issues with grace and dignity  or losing my mind completely and falling into a downward spiral of darkness. I know that I must choose the former because I have  four little people who are looking up to me and following my lead on this whole issue, but  there moments where I come startling close to letting the blanket of darkness take over. I need to always remember that there are those who are worse off than I am. Keeping this thought in my head does give me some comfort, even in my darkest moments, and I find myself repeating that sentence over and over in my head the past few days.

Winter Fun

We had a good amount of snow around these parts. It snowed most of yesterday, and because I didn't have to go anywhere, I found the snow to be beautiful and calming. (I imagine if you had to drive in it it probably wasn't so beautiful or calming to you.) Today ended up being sunny (wahoo!!!) and warm (at least it felt warm) so the 3 younger kids spent about 3 hours out in the snow building their snow fort. Andy is feeling a bit under the weather, so he stayed indoors.

I love capturing moments like this. These are the kinds of memories that make up a life - a life that is well lived in and very much loved.

Josh climbing through the snow tunnel/igloo they were trying to make. 

Elizabeth getting ready to go through the tunnel.

She made it through!

Miss Sarah. You know what is cool about this picture? Her pupils aren't dilated like they normally are. This is one of the few times I have seen them this small since her diagnosis. Hopefully, they will stay this way...

My favorite two girls in the whole wide world.

Frozen cheeks...(He went outside wearing a hat and winter coat along with the many layers of clothes he had on, but somehow the coat and hat were dismissed.)

Lily - enjoying being with her kids.

***An Update on Sarah: Sarah woke up yesterday with the spots still showing in her vision. They were no worse nor better than the day before when they first made their reappearance. When asked today how her eyes were doing she said that they were doing a bit better. She felt that she had over did it during the holiday's and that this was her body's way of telling her to cool it. She is back to eating healthy, taking her supplements, and getting the sleep she needs. Now, we have been here once before, over the summer, when she she started to see spots due to the heat and the exertion required to play on her soccer team. We were able to calm down that episode on our own, but she ended up being hospitalized again shortly thereafter because her vision deteriorated to the point where her ophthalmologist felt it was necessary to do so. While I am so glad that today her spots are not as pronounced as yesterday and the day before I am still on edge and not sleeping well with the abundance of 'what if's dancing around in my head. I will keep you posted as things change***

No Escape From MS

Sarah was unusually grouchy yesterday, and I was afraid to ask the question I knew in my heart I needed to ask, because I couldn't bare to hear the truth. So, when I did summon up the courage to ask how her eyes were doing it shouldn't have hurt my heart so badly to hear her say that her black spots were back, but it felt like a dagger had just pierced through my heart. I tossed and turned last night, and got very little sleep. It seems like every time  we are gaining momentum in our lives something happens with Sarah, and it brings us right back to the reality that there is no escape from this disease.

I know that the rage is always with me, but it usually sits dormant, and I am able to forget about it for patches of time. But then when we come back to square one with Sarah's eyes it bubbles and gurgles with a fierceness that I don't know how to contain. I want to spew hateful words at a God I am not sure even exists because, if he did, he would never let children like my Sarah go through the shit she has to go through. I want to take the venomous rage and tell God that he picked the wrong mother to screw with because I will fight with him forever and ever in order to try and make Sarah better. I will battle him until I have no breath left in my body, and I will sit in the pits of hell for all eternity, just to help her fight this monster that lives inside of her.

Bob and I sat up last night after all of the kids had been put to bed, and just talked about what this means. Sarah is now losing her hair in clumps because she has been on her steroids for too long. Her once beautiful thick brown hair is becoming ever so thin. Physically, her body could not handle another load of steroids. Not so soon after her last dose.

We both think that whatever is going on with Sarah's eyes is not Optic Neuritis. Her optic nerve healed months and months ago. This is something different. We both feel it in our guts. I think that we are both deathly afraid that whatever this is is going to take her vision, and that there is nothing we can do to stop it. Avonex is  not the way to go. I know that, to some of you, this makes absolutely no sense, but please trust me both Bob and I are on the same page with this. We have done enough research and talked to enough people who actually take the drug and know enough about MS to know that Avonex is not the way to go. I know that there is a lot of conventional "wisdom" out there that would point to taking a drug like that, but sometimes everything is not always as it seems. If Bob and I thought that putting Sarah on a drug such as Avonex would help her we would have done it a long time ago.

My only saving grace at this point is that Sarah has had several days recently where she was able to eat whatever she wanted to. With the holidays, I told Sarah that she could have free reign over what she consumed on certain days, and she did. Except that instead of there being 1 or 2 days where she ate dairy there were about 5 or 6.  There were several days as well where we did not take our vitamin D/Omega 3/vitamins because I simply forgot. (I keep all of the vitamins - except for the fish oil - in the closet. I am moving them to an open space that I see everyday so that I do not forget to take/give them out daily.) I am hoping upon hope that this lapse in our dietary and supplemental needs are what is causing this latest eye issue and that once we right both of these things then her vision will clear up.

Another issue was a lack of sleep on her part. Because of New Year's Eve we let her (and her siblings) stay up until midnight. Sleep a huge part of MS and how one feels. Although she slept in until 10:30 yesterday the late night before coupled with the party we attended that day may have been too much for her. Tiredness, stress, not eating well can all create an exacerbation. It is hard to balance letting her live a "normal" life along side of managing a disease. I don't want to keep her from doing the same things that her siblings are doing (staying up to celebrate the new year) because she will come to resent her disease (if she doesn't already) and maybe even her siblings. At the same time, I need to recognize that maybe as a family we need to alter some of the things that we do to accommodate Sarah. I have to be careful with that, too, because I don't want to change everyone's life so much because of Sarah's MS that they begin to resent Sarah.

I feel like a bad mom because she is suffering. I feel like it is my fault. If I had remembered her supplements and diet and sleep regime then she wouldn't have vision issues creeping up again. After all, she is only a child - a small child with a grown up disease - she cannot be expected (right now) to have the adult discipline necessary to take on all that is required to manage this monster. (Although, I do expect her to take on some responsibility.)

She is still sleeping, my sweet girl, and I am worried what she will say to me when she wakes up. Are the spots still there? Are they worse? Are her eyes now blurry too? Can you even imagine what it would be like to be staring at something (or even everything), and for certain parts of what you see to be missing - blacked out - because you have several small dots in the way? Can you imagine what it would be like to be 9, and trying to see the whole picture, but cannot because your vision is a jigsaw puzzle where you are constantly trying to fill in the missing pieces?

There are no "away" days with MS. There is no escape. I so desperately want to be able to have days in our family life where we don't have to deal with MS and its symptoms. Pre-MS Normal days.  But, as we have been shown, there are no vacation days that I can take. I need to always be vigilant when it comes to Sarah. I cannot stay at a party with friends as long as I would like to because it affects Sarah. I cannot stay at my extended family's homes as long I would like because it is too much on Sarah. I need to really change how I live my life in terms of managing her disease. I need to not be so selfish. Because when I am selfish Sarah suffers. When Sarah suffers my heart breaks. I cannot handle my heart breaking anymore. I feel like it is killing me.

Time with my boys

For reasons unbeknownst to me, I rarely hang out with my boys alone. By default, anytime we break up and go our separate ways as a family it is usually Bob and the boys, and then me and the girls.  Bob decided to take the girls ice skating this past weekend. Because of this I decided to act upon the opportunity for time alone with my boys and the wonderful weather we were having by going on a hike with them. I had a blast. Not only was I allowed to be in one of my favorite places: nature, but I was also able to be with two of my most favorite people in this whole wide world. This is what our adventure looked like:

I love seeing the sun's rays in the background. 

This kid is a true Godsend. 

Me and my buddy. 

My sweet Josh.

Me and my other buddy. 

Watching them from a distance enjoy their time together on the path of this journey. So glad I got to observe them this way.

Boys will be boys. Wrestling together.

Best dog in the whole wide world - Miss Lily. Loves being out on hikes with us. 

My boys and their girl. They love the dog so much it amazes me. 

Again watching them from the distance as they race towards some finish line I cannot see. 

Lily does not like to have her leash drag on the ground. She will often carry it in her mouth when we let her run free on our hikes just so it will not touch the earth beneath her feet. 

Taking in the scenery. Trying to figure out how big of a rock is needed to break through the ice. 

Using their walking sticks at battle gear to fight off an invisible enemy. So grateful that they still have such awesome and vivid imaginations even at 13 and 11. 

I know it seems redundant and cliche', but I really am the luckiest mom in the whole wide world. I am so honored to be their mom. I would do anything for these boys. They are my world, and I can think of no greater privilege than being their mom. 

The fierce love I feel for this child is undeniable. 

Andy has a heart of gold. I hope  I hope I can someday have a heart just 1/2 as pure as his. 

Boys found a large puddle that had frozen in the woods. They played on the ice for quite a while. It was fun to watch them. 

Lily (who looks possessed in this picture) would not stop rolling around at the edge of the puddle. I think she wanted to get her back as muddy as her belly. 

More playtime on the frozen(ish) ice puddle. 

Found a rock with water coming out of it. Decided to work together to build a dam. 

See the bubbles to the left of the photo beside the rocks? (They appear white in the picture) Lily was petrified of these bubbles, and would go out of her way to not be near them when she was going back and forth between the boys and myself while they were working on their dam. 

Lilly - muddy and happy.

Undoing their dam to leave nature as they found it.