Manic Monday
Today was a rough day. We have found that our sadness changes and is redefined every few moments. Tonight, Matt and I were reminded that we have to be able to vent our frustrations and not bottle them up. (We were reminded of that fact, because I lost it at dinner.) We were sad for the kids today. We have thought so much about the impact Sanfilippo has had on us, that we forget about what it has done to the kids. There is nothing that is going to make this worth it. We cannot envision an "ultimate purpose" for all of this pain. But, we do pray for some redemption...some glimpses that good can come out of something so tragic. We have been greatly encouraged by those of you who have called or written. Your words mean so much to us. Do not worry about eloquence. I don't when I write on here. We are amazed by the number of people looking at our blog. For as much as I hate the disease, I love knowing that people all over the world are learning about MPS III Sanfilippo. The more people who know and can put a face to the disease, the faster we can push researchers to find a cure.
Comments
I haven't left a comment since the diagnosis of sweet Oliver. I'm SO sad for you and I've been praying every time I think of you. I'm believing that God knows the purpose and plans for the lives of your children and for you. It's not meaningless. He does know. I'm praying that He'll reveal glimpses of hope today for you.
Elisha
I can only imagine the mix of emotions and feelings that must be swirling around you right now, and every one is more than justified.
Call me cynical but I too have a hard time finding the "ultimate purpose" in something like this. My faith is tested to it's furthest extent when I think about all that you are facing. While it's only natural to think in well intended Christian catch phrases, I can't imagine that many of the standard lines offer much comfort. Each time I find myself typing one of them, I can't hit the publish button, because everything seems so inadequate.
Like many others here, I don't know what to say, and a few simple paragraphs sometimes take an hour to write.
I think you have to continue to give yourself permission to vent, and question and explore where God is taking you. Sometimes you're bound to be sad, angry, frustrated. God is wise enough to know the sentiments of your heart and I just can't see Him judging you either for this very difficult situation.
I will continue to pray that God brings you a peace that is unexplainable.
Jason Moore
The Morgans
I, too, am thinking of you and praying for you, with tears, constantly, despite the fact that I only "know" you from this blog. I cannot imagine all you are going through but I do know that the eternal God is your refuge and, even when you feel at your lowest, His everlasting arms are UNDERNEATH you. I continue to uphold you in prayer. In Him, Alice H.
I have been getting informed by Nana and I pray and think about you guys every day. I keep thinking about Jason and everything my mom went through for so many years. She might be a good resource to talk to. I wish I could find the right words, but I can't. This just sucks(again, I couldn't find the right word!) Waverly and Oliver are beautiful. I can't believe how big they are. If you need anything please let me know. Adam and I send lots of hugs and kisses your way!!
XOXOXOXOXOXOXOXOXO
All Our Love,
Kristy & Adam
I don't know you, but came across your blog from another link. I'm so sorry for the challenges ahead. I have a cousin whose son's body is wasting from Duchennes muscular dystrophy.
We have a son with Down syndrome, who had infantile spasms, causing additional issues. I have been around parents of children with varying health conditions for the past ten years.
I know that pain is pain, and has to be felt/walked through. Words cannot change that.
I hope you have friends who will be present and available as you walk through this. I hope they "wash your feet," by cleaning house when you need it. I hope you are aware of the presence of Jesus every step of the way.
When our son was born, a cousin wrote me that he was more God's child than mine, and God loved him more than I did. This made me angry, but it is a good discipline to meditate on it once in awhile. Also, the concept of one's child as a gift. We don't own them. In a sense, we are stewards.
There is a good video by Henri Nouwen on including people with disabilities in the church: Open Minds, Open Hearts, Open Doors (or something like that). In it, he comments that this life is the blink of an eye, in the span of eternity. Meditating on this once in awhile has also sometimes been helpful.
Be on guard against bitterness.
I just got back from a weekend seminar on Faith and Writing at Calvin College, in Grand Rapids. The title of one of the sessions I attended was "Can Christians Tell the Truth?" I don't think there was a total consensus on the panel, but I appreciated the remarks of Leslie Fields. Very often, Christians do not tell the truth about deep the suffering of life is, and they become unbelievable because of it. She named the afflictions of children of several of her friends, in a reading from her upcoming book about Myths of Parenting. If you don't confess the depth of pain and sorrow, you will not be open to receive God's blessing in the cavity that pain has hollowed out. Confession/honesty is important.
I doubt you will ever say this cost was worth it/redeemed, in this life, but you will still be in reach of God's blessing and healing.
Some days you cry hard, and just keep putting one foot in front of the other.
These ideas are probably not helpful for you today, but I will leave them, in case they are at soem future date.
I know you are holding on to your ability to see beauty in the every day.