A More Detailed Update

Thank you so much Marla for giving everyone an update.  It has been a a lot for us all to process and we are still taking it all in.  Months ago Jason, myself, and Noah had a full genome sequence panel done.  We were hoping they would find a genetic link between Noah and I.  After waiting for over three years I was relieved to finally have some answers.  Noah and I both have a very rare genetic disorder called Desmin Myofibrillar Myopathy.  It's so rare that there is not a lot of information on the disease.  They have only recently discovered the disease within the last 6-8 years.  Our next step is to meet with genetics to go through counseling, gather information, and get Jonah tested.  This disease is very familial so the chances of Jonah having this disease are great.  If he tests positive we do not know how and when the disease will present itself.  I was 19 and Noah was 9.  I'm feeling thankful that God protected my life and I was able to get my pacemaker before this disease was even named.  We are also very thankful that we have caught Noah's cardiomyopathy early and that God's hand of protection has been on him. These are the biggest threats with this disease.  The other major concern is Respiratory failure.  The respiratory muscles become weakened because of the skeletal myopathy leading to possible death.

All of this is not what we had envisioned for our life and there is a lot of grieving however we still have hope. With Jesus Christ there is always hope  We can trust in him alone and trust that he is working all things for good.  We know and our confident that this is all part of his wonderful plan.  I know that he purposes these things for our good. I know that all these trials and all this suffering is so that the works of God can be displayed.  I believe these truths and hold onto them every day.  It doesn't mean I have to like this though, it doesn't mean that it's not painful and that I can't cry out to the Lord to take it away.

Romans 8: 22 says

 22 For we know that the whole creation has been groaning together in the pains of childbirth until now. 23 And not only the creation, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for adoption as sons, the redemption of our bodies. 24 For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? 25 But if we hope for what we do not see, we wait for it with patience.

Please pray that we would focus our minds on God's truths and his goodness and not be consumed by fear.  We desire to live each day with hope and joy.

Noah's appointment went well.  They can never really give us time limits for a heart for him.  They can only go by where he is on the Unos list, trends, and how often they have seen his name come up.  They did remove some avoiders. We did not ask what they meant by that.  We assume they mean peramiters they set at the beginning when they felt like we had more time.  They feel by doing this that it will help speed things up for him.  They also suggested we schedule Hannah's surgery right away since it needs to be done this summer.  They do not want to take Noah off the list for this which causes me great anxiety but again God will supply what we need and already knows the timing.  All I can do is trust.

It was a lot to take in so we appreciate your prayers as we make appointments and trust God with all the timing.  We are so thankful for the ways you all come along side us.  We are thankful to not have to walk this road  alone.  We feel very supported and truly thankful for you.