June 14, 2012: Elliotte doesn’t have Sanfilippo

It is with mixed emotions that I write this blog. On one hand, I am overjoyed that my daughter, Elliotte, doesn’t have Sanfilippo. On the other hand, it illuminates Sanfilippo in Jayden and Brooklyn and deeply grieves me in new, fresh ways.

We found out that Elliotte doesn’t carry the mutation for Sanfilippo…she is not even a carrier. Genetically speaking, each one of our children have a 25% chance of having Sanfilippo (like Jayden and Brooklyn), 50% chance of being a carrier (like Justin and I), or a 25% chance of being completely unaffected (like Elliotte). We are beyond excited for her and for what that means for her future. In fact, I think I am still in shock. To be honest, I don’t even know how to process such an overt blessing from God. Most people expect that God would bless them with a healthy child and are shocked when it is not, I was prepared for a Sanfilippo baby, so I am shocked she doesn’t have it. I know God is good, but didn’t think he would be that good to me. For years, we have had to fight to see the blessings in the midst of pain. I still believe the blessings are so rich when you are going through tough stuff if you choose to focus on them. But, ironically, the moment that we heard the wonderful news, we were flooded with a new sadness for our other two children. I can’t say that anything prepared us for that emotion. Justin even commented that he was sad that we would celebrate for Elliotte—what if Jayden and Brooklyn knew we were celebrating? I asked inside: Why God, Elliotte and not Jayden and Brooklyn? Why heal one and not all three? How will I handle a child that understands what is happening to Jayden and Brooklyn? How will we do life as a family? Will she be made fun of for her siblings? How will she handle it? How will she handle not having them around? I was thinking about all the new things we may get to experience with Elliotte, like dance class, or a “normal” classroom, or potty training, a wedding, a grandbaby….but thinking those things makes me grieve them all over for Brooklyn and Jayden. It is hard to imagine life without them. I had to fight tears thinking about Ellie with her cousin, Lucy, growing up….without Brooklyn as part of the experiences that they will have. I keep seeing J and B sitting in wheelchairs while Ellie gets to experience all these things. I think, although I try to fight it, about J and B’s funeral, and my little Ellie, burying her sister or brother. I cry even typing that. I almost think Elliotte having Sanfilippo would be easier in some ways. Then it would be fair in our house. There wouldn’t be a light shining on everything J and B miss out on or can’t do because no one could do it. There would be no constant reminder….we could escape the world. But, I couldn’t imagine having to watch a third child fade away, and doing 3 funerals. At the same moment, I feel a sense of new hope, a breath of life that has entered our home in Elliotte. She won’t let us hide. She will force us to continue to shine in the darkness and I believe her little soul will do much of the shining for us. I have a gut feeling she will not let us give up hope. Wow these thoughts hurt and challenge me in a whole new way and I am thankful. I wanted so bad to feel again desperate for God like I did in the first months of our diagnosis with Jand B without having to grieve and God has answered my prayers. I have to get back to the place of living in the moment and being thankful. There is no guarantee for Elliotte either. This is not our home. Worldly dreams, even the good ones, don’t need to be dreamt. If they come, I will enjoy them richly. If they don’t, I don’t have to grieve the loss of them. I am reminded that God will carry me and I don’t have to get ahead of myself. I have to fight the sad thoughts because he will strengthen me when I need it and not a moment sooner. I am reminded to look at all the blessings. I can choose to see all the beautiful benefits of both Sanfilippo and non-Sanfilippo. Sure, there are challenges on both sides. I am gonna have to watch what I say, have times when she doesn’t like me, and I will have to fight for her character and salvation on my knees with Elliotte. I don’t have to worry about any of that with J and B. But I also may never have to advocate for her at school to get a one-on-one aide, change her diaper when she is 10, or hold her hand as she wakes from anesthesia for the 10th time. The grass isn’t greener on the other side. It will be a new challenge for me as a parent, which I think all parents are called to, to appreciate each child as an individual and not compare siblings. I want to love each of my children for the wonderful, unique child of God they are. One of a kind. I even want to be careful not to lump Brooklyn with Jayden just because of Sanfilippo, or lump her with Elliotte because she is a girl. I love each one of my children simply because God has entrusted them to me. So it is with anticipation and mixed emotions I write. I am excited to see how God will grow me in this new part of my journey. May grace precede and follow my attempts to parent and let love and forgiveness reign.

One thought on “June 14, 2012: Elliotte doesn’t have Sanfilippo

  1. Oh Stefanie – Any parent would be caught in the same maelstrom of emotion that you are. But you are right on the money – you will love and appreciate each of your children for their unique beauty and you will live each day to the fullest for however much time you have with them. I am a relative by marriage of Sarah Kinney and have been following your blog since the Pepsico challenge days. It is amazing how closely attached we can become to people we have never met. 🙂 The courage and strength you exhibit every day are a gift to so many – not just your children. You show us how to live love! Thank you.


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