|"Angel of Grief" (Rome, Italy)|
In April 2010, our precious daughter Kaitlyn was diagnosed with Niemann-Pick Disease (Type A), a rare, fatal genetic disease with no cure. We decided to create this website for our family, friends and other families confronted with Niemann-Pick. It is our hope that we can help others by sharing Kaitlyn's journey. Our sweet girl lived a full life from July 1st, 2009 - March 22nd, 2012.
Thursday, May 31, 2012
Tuesday, May 22, 2012
It has been two months since Kaitlyn passed away. To me it feels like eternity. To say that it has been a tough road since her death is an understatement. Every day comes with new challenges and we are trying our best to take one day at a time.
Many of you may wonder what there is that you can do to help. What we could use most are prayers. Not only for our family but other families who have lost a child to NPD recently (or from any cause).
I came across a list of prayers for grieving parents last night and I want to share it with all of you as it seemed to speak directly to my heart.
- That God would be our refuge. (unshakable trust) Ps 11:1
- That God’s love and presence surround us day and night. Rom 8:38-39
- That God’s strength would help us through the grieving process. Ps 27:13-14, 29:11
- That we will accept God’s wisdom, knowledge, judgments (decisions), and ways rather than ask “why”. Rom 11:33, Prov. 3:5-6, Is. 55:8-9
- That we will not doubt God’s goodness or faithfulness. Rom. 8:28-29
- That guilt and depression will not overtake us. Phil 4:8
- That our marriage will be strengthened as we grieve uniquely. That we’d give each other the freedom to grieve differently.
- That we balance grief with our responsibilities as parents. (purposeful and consistent in love and discipline)
- That our son would be protected during this confusing time as mom and dad grieve, and that he might have a sense of normalcy and security.
- That we would not feel alone, but sense God’s presence, and lean on the Holy Spirit as our Helper and Comforter and Truth.
- That we would experience His peace like never before, and grace sufficient for each day/minute.
- That the Lord would guard our hearts from words that hurt instead of comfort.
- For wisdom to discern “what to do next” and know “where to go from here”.
- That we could begin to see His plan… a mere glimpse of the purpose of our pain... again, no matter how many times it seems to change.
- That we choose to be gracious and kind to each other instead of justifying criticism and frustration when we are hurting and sad.
- That we’ll be honest with our emotions and won’t be afraid to cry.
- That we would not waiver in our trust, hope, or joy in our Heavenly Father, nor would we lose our praise even through the tears.
- Even though life goes on (much more quickly for everyone else) that we know/trust God is with us right where we are. Remembering that He hears our cries and sees our tears.
- That we’d always be mindful of the hope of heaven. That we’d be eternally focused and not be comfortable to get caught up in the “stuff” of this world.
- That our family will overcome spiritual battles.
- That through our loss, because of our children, Kaitlyn and Cole; people will see the need for a personal relationship with God.
- That in time we can comfort others with the comfort that we received.
- That we would not hold tightfisted “our” children or “our” things. That we see them as gifts entrusted to our care for the time being.
Saturday, May 5, 2012
|I always think of Kaitlyn when I see this painting. Done by an 11 year old! http://www.artakiane.com|
Since March 22nd, the day Kaitlyn passed away; it has been like throwing a deck of playing cards in the air and picking them up one by one.
Each card is different, yet evokes different emotions and some you find where you least expect them to be.
I know that God has a plan and that once I pick up all the cards, I will be able to move forward and make a difference in this world, just like Kaitlyn did.
The bond between a mother and her child is one that is so deeply rooted in the soul that it is almost incomprehensible. The emotions I have felt range from joy that I got to BE her mother and that she made such a difference in others’ lives, to anger and rage that her innocent life was taken away.
I am dedicated to making sure Kaitlyn is never forgotten and to helping other families who are going through a similar situation cope and get the support they need. They need the support and knowledge of someone who has lived and seen first-hand what NPA can do.
Sorry if I have been quiet lately, I just have to pick up the cards first.
P.S. A wonderful piece of news... I was recently nominated to be on the Board of Directors for the National Niemann-Pick Disease Foundation! Not official yet, but I know that I can make a significant impact on the NPD community and accelerate the search for a cure. If anyone knows me well enough; when I say I'm going to do something, I put everything I've got into it. Look out NPD!