Children of Our Heavenly Father

A couple Sundays ago, I watched the most beautiful broadcast of Music and the Spoken Word I have ever seen. It was dedicated to the victims of the Sandy Hook Elementary School shooting and featured children's music and songs of peace and comfort. Apparently, one of the Mormon Tabernacle Choir's conductors, Ryan Murphy, grew up in Newtown Connecticut and attended Sandy Hook as a child. It was such a meaningful, spirit-filled broadcast. The images shown as the choir sang were mostly of children and families, and the spirit of innocence and deep regard for children was so sweet and strong at the same time. I was very touched, and it restored so much of my hope and faith in the future that I lost the day of that horrible shooting. I remember reading something on Facebook, looking up online what had happened, and then calling Grant just sobbing. I locked myself in my bathroom so the boys wouldn't hear our conversation, and I just cried and cried. In many ways, I couldn't understand my own emotions; I didn't personally know any of the people involved (though we have friends whose children played with sweet Emilie Parker). But it all made me feel so helpless. My daily efforts and energy are spent with little ones, trying to teach them and keep them safe, trying to prepare them for a hopeful, full life. I already worry what kind of world they will live in someday, and that day seemed to send all my hopes crashing of knowing that, when the time comes, I will send my little ones into a world that will be safe and decent and happy. I remember carrying that sorrow and lost hope for weeks afterward. The choir's broadcast was my personal source of healing with regard to that tragedy and how I was affected personally.  The music, the messages, the images, left me sobbing, but this time for much different reasons. I was home with Zach from church, he was napping, and I sat down to watch the program my friend had told me about. I remember being completely captivated, almost unable to breathe as I sat and let peace and comfort and hope fill me up. It was sweet, lighthearted, happy, and brought back to my heart all of the strongest feelings of love, joy, and adoration I have ever felt as a mother. The music and program so beautifully captured the joy and innocence of children. I couldn't help but cry and cry as I listened to the most beautiful arrangements I have ever heard of "I am a Child of God," "Jesus Loves Me," and the hymn, "Children of Our Heavenly Father." I admit, I wasn't too familiar with that hymn before the program, but it was so touching, and the words were perfect for the occasion. I sat down to the piano this morning to play, and randomly flipped to the hymn. I don't even know that I even knew it was in the book, but when I saw the title, my mind went straight back to the program and the feelings I had felt while watching. I played and felt comforted all over, as I read through these sweet words:

Children of our Heavenly Father

Safely in his bosom gather;

Nestling bird nor star in heaven

Such a refuge e'er was given.

Neither life nor death shall ever

From the Lord his children sever;

 Unto them his grace he showeth,

And their sorrows all he knoweth.

Though he giveth or he taketh,

God his children ne'er forsaketh

His the loving purpose solely 

To preserve them pure and holy.

Isn't it such a beautiful hymn? Why have I never noticed it? Why wasn't it among my cherished favorites? (It is now.)  I was reminded on that sacred, sweet morning what a gift children are to this world. The Spirit of our Heavenly Father spoke to me in such a simple and yet profound way, and reminded me of the divine role of parenthood. No wonder Satan wants parents to feel discouraged in their roles. No wonder he is working so hard to make it seem like children and families and the wholesome love of home and family are of little value in today's fast-paced world. How grateful I am to know differently! And for music and programs and teachings of our Heavenly Father that write upon my heart in powerful ways that God is a loving Heavenly Father, and that we, as His children are His greatest of all creations. And how precious to Him are sweet little children. He cherishes their innocence and sweetness.  They are the purest witness of His existence and His love.

Zach Update

Our "colocho" ("curly head" in Spanish)

Lately, the majority of my time and energy has revolved around little Zach and keeping him healthy. Between April and December, Zach was hospitalized three times for respiratory troubles. We're in the middle of an especially brutal winter season, with flu and RSV bouts abounding, plenty of good old Utah inversions (translate: bad air that's especially hard on little ones in Zach's situation), all of which has meant a lot of time at home. We've had to improvise and come up with some silly stuff to keep both boys happy, but I can't complain one bit, because, since we've been in hermit mode and we've found the right medicines and treatments, Zach hasn't had one serious bout of breathing troubles. This week he even survived a cold without ending up in the hospital, which for us is monumental!  

I sometimes find it difficult to help people who haven't had children with serious respiratory problems understand how much it changes our daily life. The littlest cold or stuffy nose can send us to the ER, because Zach's body responds in such a reactive way. So we have to really minimize his exposure to germs and illness.  As a result, we can't be in large group settings, which for us has meant limited involvement in family gatherings, alternating which parent attends church so we can keep Zach home, avoiding taking Zach out on errands as much as possible, definitely no exposure to play places or kids museums, day care or nursery at Church or Relief Society meetings ... you get the idea.  It would be one thing if it was just me and Zach. But I feel especially guilty about having to hang out at home so much because of Eliot. They're both such busy boys with tons of pent-up energy, and playing inside just doesn't cut it all the time! This winter is definitely putting to test my ability to come up with creative, energy-expending playtime ideas with my kiddos. We're so used to being out and about, going to the library, visiting the pet store, running errands, playing at the mall play place or making special outings to children's museums, etc. ... no wonder we're all a little stir crazy!

Other ways Zach's struggles have changed our life is integrating breathing treatments into our schedule.  He has to have two treatments of Budesonide (Pulmicort) every day.  The treatments take about 15 minutes each, and he HAS to wear the mask you see in the picture above the ENTIRE time. He hates it. We hate it. Depending on the day, it can be a total battle. But it's what we do. The cost of the prescription is jaw-dropping, and I'm dreading paying full price for it when our 90-day supply is up. On top of that, Z takes an oral medication (Singulair), the cost of which is almost as mind-boggling as his breathing treatments, as another means of keeping his airways open and blocking germs from getting straight into his lungs.  Additionally, we keep Albuterol on hand as a rescue inhaler should he start wheezing or struggling to breathe.  There are strict instructions for keeping his Nebulizer sterilized and clean ... it can all be a bit much to keep on top of!  In order to keep Zach free of infection, we all have to be extra cautious about not bringing germs home. When anyone walks through the door, they have to wash hands, and depending on where they've been, change their clothes. Instead of Grant getting to scoop Zach up for snuggles or daddy rough-housing at the end of the day, he has to rush upstairs to change his clothes. I'm doing quite a bit more laundry and turning into a deranged, hand sanitizer-toting germaphobe mommy!

I think what has been hardest on me is the constant level of stress and worry. Every runny nose, cough, and sneeze from Zach puts me in panic mode. After three hospital stays, all of which came as the result of what started out as a regular kids' cold but then escalated to labored breathing in a matter of only a few hours, I automatically kick into freak out mode when I see the slightest symptoms of illness.  I check on him constantly, pester Grant when I'm away about how Zach's breathing, and keep the baby monitor cranked up at night so I can hear every squeak and movement that comes from Zach's room. I have been kind of a mess! I realized a few weeks ago that I've started holding my breath a lot and have a hard time letting my shoulders and body relax.  I feel like a friend of mine, who also has a child with severe respiratory problems, said it best when she said her son's troubles made her feel like her "brain broke." I feel like my brain is broken! I'm one of those psychotic mommies freaking out constantly about hand washing and not touching ANYthing.  I shudder when I hear someone cough next to me or hear someone at church excuse their voice when they're teaching a lesson, swearing that of course they're not contagious.  If they only knew that exposing their mild illness to families like mine is a source of intense stress, I wonder if they'd stay home.  I feel so helpless being at the mercy of other people's consideration sometimes. I know plenty of people with "hardy" kids, who rarely get sick, or if they do, they bounce back like it's nothing.  I remember going to church as a child with other kids with constantly icky snotty noses.  It makes me crazy and even angry sometimes!  I wish it didn't. I wish it didn't bother me. But I'm hyper-sensitive to it because of what I've been through.  Another friend commented on my Facebook page, "Other people's kids' cold is my child's 3-day hospital stay."  It's so true! It seems so reasonable to me that we can prevent spreading illness by keeping sick kids (and adults) home, but I guess until you've had a simple cold cause you major anxiety, most people shrug it off and aren't willing to be inconvenienced.

 I'm really hoping that I'll be singing a different tune a year from now. Maybe I'll look back and blush with embarrassment over my "broken brain" and "keep your dang sick kids home!" tirades (please forgive me). Until then I recognize this is our family's burden to bear and we'll remain in hermit mode as long as needed to keep our little guy healthy.

I have recognized lately the need to be more positive about all this (so maybe this post was my way of purging my system of all my pent-up frustrations?!), so I will end on this note. I LOVE this kid. I love our Zach. I love my awesome Pediatrician. I'm so grateful for medicine and solutions. I'm thankful that his condition is not worse than it is, even if his respiratory troubles do cause us a fair amount of anxiety and, for now at least, have altered our daily life in somewhat significant ways. But most of the time, he is a healthy, happy kid! I'm sorry if I've seemed overbearing or lacking in compassion in this post. But this is my daily worry and struggle. It is hard, isolating, and lonely at time to go through these struggles. I'm grateful to have come across people who can truly empathize with me, because it's an exhausting constant source of stress. I'm thankful for the people who have reached out with compassion to us and for those who have withheld judgment that we're not at church as much as we'd like to be and have had to modify our lives somewhat in terms of callings, participation in ward and family events, etc. This is our life for now, and we're just doing the best we can to survive and avoid the hospital!

I should also say this -- in some ways I have seen this trial in our life as a blessing in disguise. Up until all of the hospital stays and subsequent testing and treatments, Zach was such an independent baby. He is completely the opposite of how Eliot was as a baby. Eliot insisted on being rocked to sleep and would let me hold him on my lap and read and sing to him. Not Zach. Since Zach was an infant, he hasn't wanted to be rocked to sleep or read to. He would squirm and protest until you just put him in his bed at night and let him sleep. Which, in some ways is really nice. But I'll admit, I missed being able to at least sing my baby one little lullaby or have him stay still in my arms for just one quick story. Well, now he will.  All his breathing treatments and his nervousness around doctors has created "forced bonding time." When he's not putting up a big fuss over his breathing treatments, he will let me rock with him and read story after story. I'm finally able to teach him "Itsy Bitsy Spider" and "Wheels on the Bus" because he'll actually sit for it! So in that regard, I will regard all of the medical drama of the past year as a means of bonding at a much deeper level with Zach. That has meant a lot to to me, and for that I should be grateful.

Happy and New

I feel like I should begin this post with one. great. big. sigh. (AHHHHHHHHHHHHH.) 2012 is over. Phee-ew. As my sister said it best (quoting "Mary Poppins"): "Don't let the door hit you on the way out, Deary!"  I am SO glad 2012 is over!!  I always feel a little ungrateful saying that after a bad year.  There's always so  much to be grateful for, but some years put you through the ringer more than others.  And 2012 was our doozie.  I'd rank it as my hardest.  Yup, including law school years.  Law school years at least gave us a break for summers and Christmas.  This year was full of what seemed like nonstop blood pressure spikes.  I'm ready for a breather!

SO, out with the old and in with the new!  My wise little planner had this quote in it today (mm, hm, still using a Franklin ... holy outdated nerdiness, I know!), and I thought it was PERFECT for how I'm feeling about 2013: "Your future takes precedence over your past. Focus on your future, rather than on the past."  I think my motto for 2013 could and should be just that: "Focus on your future, rather than on the past."

Along those lines, my awesome friend Laura made this one of her goals for 2013: "Everyone gets a clean slate."  I love that.  She's a great example of not holding grudges or judging or gossiping.  I think it's one of the things that makes her so incredibly easy to like.  She is so positive and fair with everyone.  I want to be more like that this year. And heaven knows I have been in need of wiping my slate clean.  I love that mental image of cleaning up that old board and starting fresh.  My toast to the New Years is "Let's start fresh."

I have lots of areas in which I could use a fresh start.  I need a kick in the pants with diet and exercise.  I have been one massive stress case over the last few months.  Zach's health struggles have rendered me a walking ball of anxiety.  Instead of turning all my nervous energy into productive task-tackling or logging awesome miles on the treadmill, I have let my worry keep me up at night and send me to the pantry for false comfort.  Time to set those things aside and put my stress to good use.  I am hoping that a recent dose of good news regarding Zach's health (his chronic pneumonia is NOT being caused by Cystic Fibrosis) should help me sleep better and not feel constantly on edge.  Yes, we still have to get through winter and RSV season, which will mean a lot of time holed up with active boys, but it's nice to know that Z's respiratory struggles are not being caused by something life altering.  Major sigh of relief.

I need a fresh start with my scripture study and prayers.  I need to get back to those being daily habits instead of sporadic attempts.  Grant and I also want to accept the challenge from our bishop to attend the temple once a month.  We were doing really well with that goal and then got derailed by Zach's last hospital stay and the holidays.  I always look forward to that time together and feel a lot more at peace when that's a regular part of my life.

I need a fresh start in my relationships with others.  I have been caught up in my own worries and concerns too much and need to do more reaching out.  Tricky when I'm limited by needing to keep Zach home and germ free.  But there's still much I can do to continue mending broken relationships and extending a hand of friendship in my new ward and neighborhood.

I could probably keep going but feel that's a good start.  And I hope 2013 will get off to a good start.  We're hoping to minimal if not any hospital stays this year (none would be awesome).  I'm excited for Eliot to start "real" school this fall.  We have projects for the house in mind and other goals to achieve individually and as a family.

Welcome, 2013.  Be good to us.