Water

You never think you will be able to weather a storm, until the storm hits. And when it does, well, you have no choice but to hold on and take it- the waves that swell over and over, the gasps of air that come when there is a break in the clouds, the chill that overtakes your body as you grow hard against the hits that come. If you were presented ahead of time with all that a storm holds, you would absolutely declare yourself unfit for making it through.

And then, it comes. Angry, fast, without care, lashing, over powering, secluding, betraying and vicious. It comes all at once and yet building at the same time.... it comes, and though you think you will sink, you soon find out that though you feel as though you are drowning, you are able to tread water or at the very least float. You are able to take the waves that come.

Many times I have had the image of my children in the pool as they learned to swim. The first thing their instructor taught them was to jump into the water and be able to find the wall of the pool. If they were too far from the wall, then they were taught to flip onto their back and float while they caught their breath and calmed themselves enough to find the wall. So often during this storm, I have not been able to find the wall and have had to just float.

Over the past few months, especially, there have been things that are helping me keep my head above water.......

Strangers. People I have never met have touched our days in unexpected ways and it has been touching to be reminded of the goodness of people. I have more than a few examples of people we have never met who have contacted us, but one I will share now is of a group of moms at Seacoast. This group of women, who have never met me, came together to put together a box just for me. Gifts, cards, even money...put together out of concern and care for my mother's heart. As I went through the box, I shook my head and repeated more than a few times "It is too much." More than the things in that box though, I was uplifted with encouragement. Those women won't ever know how much that act of kindness lifted my spirits.

Elizabeth's Pediatrician. Wow. A few months ago, I switched to a different pediatrician in the group the kids go to. All of the doctors there are great and know about Elizabeth and at one point or another have cared for her while they were the on-call hospital doctor at whatever point Liz was inpatient.
Switching to having Dr. L. be the primary Pediatrician of the group that is caring for Liz has been a huge thing for me. She is steering the ship and she has been amazing at helping me balance all of the other specialties seeing Liz. She calls me on her own every couple of days (daily some weeks) to check in and has been so very supportive. I have described her, just as others have, as super smart and an advocate for my child, but not someone who would hold your hand or give you a hug; it is just her personality. And, knowing that she was kind and so very smart, I have been fine with not having a "hugger" for a doctor. I will officially go on record now, though, and say that I was wrong. Last week was her turn for rotation as the on-call doctor, and when she walked into Liz's hospital room, after we'd been there for 15 days, she came to me and asked me for a hug, and then just held me. I about gasped! She then asked Liz if she could hold her. Amazing...we broke her down : )
Even more amazing is having someone lead us through all of this mess. Grateful for her.

My faith. I do not know many, many things. But, I do know that Elizabeth Claire was His child before she was mine, and He would never do any of this without a purpose. I know that we are to live life to bring glory to Him, and Elizabeth- with her strength, inspiration, faithfulness and belief in her God- is doing just that with her life. I question Him, I do. But I know that faith is the reason we are getting through this.

Walter. Oh my goodness, this man has driven me crazy. If you don't know our story, well, read back through this blog. Even then, it isn't all there. We have been through difficult, difficult things and at times, we were simply holding on. Actually, over the years, there have been times when Liz was what was keeping us together. Now, twelve years into marriage, he has had an awakening (or something!!) and has been amazing. I could do a whole blog post on this. He has just been so, so supportive and it has had a huge impact on how I am able to deal with everything.

My sister. Well, I cannot write much about her because I started to cry five minutes ago just thinking of her. Megan is a mother to my children when I cannot be. Seriously. I miss Jackson and Kate when I am not with them, but knowing they are with Megan means that I never worry.
Meg also has an amazing ability to listen. She allows me to vent without judging me or overpowering me with advice or opinion. She is gentle and compassionate and encouraging. I could not do life without her...I just couldn't.

My girlfriends. I knew I had friends, but I didn't know how cared for I was. To have friends come alongside me with meals, notes, offers of help, texts, e-mails, calls.... it has been amazing. I have said it before- going through this all leads to having a feeling of lonliness. As I sit in the hospital, or spend each and every day with Liz at home while watching normalcy go on in the lives around me, it is isolating. If you have reached out to me in even a small way, please know that it has impacted my life.
Speaking of friends....

......I am lucky to have some mentor mommas as friends. These girls are amazing! You would never know by looking at them (especially in this photo booth picture of us) how much weight they carry by having sick children. When I say sick, I mean really, really sick. And while we are able to commiserate and share the horrible bond of mothers who have sick children, they are much more than that. These three (and I am fortunate enough to know more than the three of them who offer the same thing) are examples of strength, and being with them is wonderful.... because for them, life is difficult and sad at times, but it is also fun and amazing and way more than the commonality that brings us together in the first place. It is important to surround myself with others who see things the way I do; That is, that this (illness, diagnosis) is what is happening to my child (and to our family), but it does not define her....I refuse to let that happpen. And for this reason, E. has raised amazing young adults, N. was able to plan an amazing night for Liz and Maryam, even with stress of having her own sick children, and K. and I were able to hook our girls up to IV's one minute and then get into a photo booth and giggle the next.... we know that life is just too amazing to sit around and mourn what you wish was so.

So many things helping me keep afloat.

Pray for our Liz tonight. She isn't handling the IVIg as well as we'd hope for this round. Last night she had retching and that has continued through to tonight. She is achy and her head is pounding.
She is pretty anemic and so she is extra tired and super pale.... she is kind of a mess right now.