Sunday, October 7, 2012

Day 7: Spina Bifida and the Atonement

SB awarenessWe’ve covered a lot of ground this first week for 31 Days of Spina Bifida Awareness.  Next week I will begin talking about hearing the diagnosis and getting through pregnancy.  For today I just want to share some hope for those who are struggling.  You may not be facing Spina Bifida but I am almost certain you are facing something. 

As I have come face to face with the life-changing circumstances Mason brought I have had days and weeks feeling overwhelmed.  I have been sad, frustrated, angry, hurt, terrified, and helpless.  I can’t even say I’m beyond all that.  There are still moments that catch me by surprise.  Would you care to hear a few?

  • Moments when I see a baby wiggling it’s toes, kicking tiny feet, or taking tentative steps and I grieve that Mason is paralyzed.
  • I look at my six older children and worry about how Mason’s daily care and medical appointments and interruptions are affecting their homeschool education.
  • Anger when I hear insensitive comments from others about disabilities, special needs, or the worth of children who are deemed ‘less than perfectly normal’.
  • Helpless wonderings – will he be made fun of or excluded from activities because he can’t walk, run, or stand? 
  • Overwhelmed by the thought of lifelong medical needs.
  • Anger that money and insurance bureaucracy is often the driving force behind the medical care offered to my son instead of what is best for him.

As I have struggled through these emotions the atonement has become very real in my life.  I used to think the main focus of the Savior’s atonement was sin and repentance.  I was grateful for that power in my life because heaven knows I sin on a daily basis.  Looking back I can see how limited my view was.  It is not just for washing away sin.

The atonement of Jesus Christ reaches us in our hurts, our disappointments, our heartaches, and our anger. 

Jesus Christ did not just take our sins upon him.  He took our pains, afflictions, temptations, and grief.  He is the one who truly understands how we feel.  I love these scriptures in the Book of Mormon:

“And he shall go forth, suffering pains and aafflictions and btemptations of every kind; and this that the word might be fulfilled which saith he will ctake upon him the pains and the sicknesses of his people.

And he will take upon him adeath, that he may bloose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to csuccor his people according to their infirmities.” (Alma 7:11-12)

There are so many times when life seems to be harder than I can handle.  I am lost and hurting and crying out for relief to make it through one more day or even one more hour.  In those moments I can hold on to my misery or I can give it to my Savior, who said:

aCome unto me, all ye that blabour and are heavy laden, and I will give you crest.

Take my ayoke upon you, and blearn of me; for I am cmeek and dlowly in eheart: and ye shall find frest unto your souls.

For my yoke is aeasy, and my burden is light.” (Matt. 11:28-30)

If you have been through this surrendering process you know that sometimes laying our burdens down is not a one-time event.  I have laid down my burden, felt the peace of the atonement, and then foolishly picked up that burden again.  I forget that I don’t have to carry those feelings any more, that I don’t have to walk that path alone.  Through the atonement Jesus has already felt those feelings and carried those burdens for me.  I just have to trust enough to lay them down.

Whatever circumstances you are struggling with I know that the atonement of Jesus Christ can help ease your burden.  You can find peace in the midst of affliction.  Just give those problems and emotions to the Savior.  Lay that burden down and then lay it down again and again.  His yoke is easy.


  1. Thank you for sharing these deeply personal thoughts and moments. From the first time I checked your blog out these were the kinds of questions I had for you-the ones too personal to ask but yet they were the exact things I questioned within myself, in my "could I be as strong as Tristan" moments. Alma 7:12 is the best scripture in the world for parents, who feel the pains for ourselves and our children, both real and anticipated, and those things that we worry about that do not come to fruition. On another note, I have been meaning to ask but to shy to speak out-does Mason's wheelchair turn or does it go only forward and backward? The little casters in the front look like they steer it, but then with the other wheels being so big I wasn't sure if they overpowered the casters. I am not at all mechanically inclined. Have a wonderful day and enjoy what is left of this magnificent conference weekend.

  2. Katie,

    Thank you for the sweet comment. I'll be honest, I've never thought of myself as strong in all of this, just determined to make the best of it! There are so many times when it's just plain hard mentally or emotionally. That's why the Gospel is so important. I don't know where I would be without it.

    As to your question about Mason's chair - it turns! In a typical wheelchair you use the large wheels to turn. Holding one still while rolling forward with the other makes you turn toward the still wheel. Rolling one forward and the other backward can pivot you a bit differently. You can turn backward by reversing (hold a wheel still and roll the other backward). The casters give his chair better balance (so it doesn't tip forward or back like a wagon would without horses fastened to the front). But all the power comes as he moves the big wheels by hand.

    Of course all of this will be figured out by Mason as he grows. One neat thing is kids naturally explore and try things so he'll most likely find out all the ways he can move it on his own. If not we'll have one of his slightly older brothers hop in and show him!

  3. I see now that you have explained it. Not sure why that was not obvious-now I feel like a dork:). Ok one more though-at what age do you anticipate him growing out of this chair, and will there be a gap before you can get him one through a medical supplier? Or will great-grandpa have a modification of sorts?

    As a side note, my sister's son(10 weeks) will see a neurosurgeon this week for sagittal craniosynostosis, which she tells me is a condition where his soft spots are closed and he'll need surgery to remedy. From the things that you were mentioning about shunts and things I was able to calm her down, reminding her that while its new to her, neurosurgeons operate on a daily basis-even to the point of calling operations routine. Then I encouraged her to look online to find someone who had gone through it with their child-hoping she finds someone who can alleviate some fear and answer questions that come outside the dr.'s office, the way that you do here. Your blog is amazing and I am grateful for the spotlight you shed on the scientific and spiritual nature of this journey.

  4. Katie,

    We're hoping this will get Mason through to his 'official' wheelchair through a medical supplier. If he outgrows the Bumbo seat we can, however, take the seat off and put on a different seat. We would be able to use a booster seat like you see for little ones at the table, or there is a more expensive version of the Bumbo by a medical supplier for older children. We could even make a wider platform if needed. However, right now my 1, 3, and almost 5 year old can also all fit in the Bumbo seat. Kids tend to thin out and grow longer, while their hips really don't get a lot wider for several years.

    I have heard of fontanelles closing early before and that it requires surgery. I agree that would feel scary but it is nice to remember that is something doctors 'fix' regularly. I know there are several types of craniosynostosis and found a few blogs she could check out with a quick google search of the word plus the word blog, here are two:

  5. Thanks so much for the sites-I'll pass them along right now. As for the Bumbo chair, its fabulous that he has it-the pic makes me smile. I search it out every time I visit. So glad to hear that it will work for him until he has his official one. Every child in need deserves one and a family like yours.

  6. Tristan, thank you so much for this beautiful testimony and reminder of our Savior's love for each of us. Yes, to not only take our sins but our burdens too.

    I came over b/c Christie posted about your latest post on SCM. I am so sorry Mason has had to go back for surgery. I will keep him in my prayers. And you too.

    I really can relate to your bullet points. I am at a place of just being angry that children are born with disease or defects. I know that isn't very mature of me in Christlikenes, but it is just the honest truth.

    Many heartfelt hugs and prayers,
    Leslie (LDIMom at SCM)


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