Learning more about little Josiah

A while back some of Josiah's blood was sent out to be tested for having a syndrome. The doctors were questioning a syndrome because Josiah has so many little things going on in his body. Often times when symptoms come in a "package" it can be indicative of syndrome. At the hospital in Colorado Springs all the testing came back normal. Then at Children's they took more blood and tested it again. We were told that this testing can take up to 2 months to get results. Well 2 1/2 months later, after we were already home, we received a phone call about the results. Josiah has a condition known as Noonan Syndrome. For a while now I had been feeling like something was definilty going on with Josiah because he was not learning things in the same way Iylah did. I thought that the blood testing would reveal nothing (like it did in Colorado Springs) and that we would never really know exactly what was going on with Josiah. Getting the phone call brought a huge sense of comfort to Craig and me. Of course it is one quick phone call that totally changes your life. We recently had a follow up appointment with a genetic doctor to discuss what this means for us and Josiah.

There is a wide range of severity with this syndrome. Josiah has the least severe variation of Noonan Syndrome (however, even within his gene mutation there is a wide range of severity). His current feeding difficulties, heart conditions, kidney conditions, low muscle tone (which causes much of the other issues), reflux, gas, fussiness, small size, ect. are all related to the syndrome. However, we are finding that some people with Noonan Syndrome never know it. Therefore, Craig and I will also get our blood checked. If a parent has the syndrome there is a 50% chance of having a child with it. Sometimes this syndrome occurs sporatically and sometimes it is passed down from the parents.

All of Josiah's internal abnormalities will have to be surgically repaired (like his kidney was). Currently we are anticipating that they will be repaired before he is even a year old!! That is a lot for his little body (almost 10 lbs by the way :)). We are constantly seeing specialists to monitor all of these conditions. Depending on his growth and the severity of the conditions will determine the dates of the surgeries.

God has graced us with an enormous amount of peace! Really there are no words that can describe the joy we feel that God put this precious infant in our care. Melissa, my best friend since 2nd grade, had a brother who was handicapped. Benny unexpectedly passed away on March 5th at 22 years old... five days before Josiah came home from the hospital. Growing up people always commented on how sweet and kind Melissa is. There is something about Melissa that radiates. When I first found out that Josiah might have something more going on, I thought back to the impact Benny had on Melissa and her whole family. Honestly, God gave me so much peace about the situation that I would almost have been disappointed to find out that Josiah did not have something more going on. Melissa saw life differently because she had experienced life with a special gift... Benny. This gift is one that only comes by actually experiencing it. I wanted that gift, for me, for Craig, and especially for Iylah.

We don't know exactly what the future holds for Josiah. We do know that we have been blessed beyond words. Sometimes I worry about the responsibility that has been put in my hands. However, I know that God would not have given Craig and me this gift without also giving us the strength, the patience, the humility, the perserverance and the wisdom to enjoy this gift, baby Josiah. Continue to pray for him and all the surgeries that he may be facing in the future. Thank you for all the support and prayers.


Please Remember
by Melissa Loyd spoken at Benny's funeral

Well I decided I wanted to speak today even though I knew it would be hard. As Ben’s only sibling I feel I had a bond and relationship with him that was exclusively ours. Benny made my family and my childhood very unique compared to my friends. Today I want to share with you some of my special memories of growing up with my brother.

First:
-I think one of the reasons we got along so well was because growing up, he always willingly let me have my way. He was my real life baby doll.
-Growing up, especially when Ben was younger, the dinner table was always an adventure. Benny would often sling his cup or silverware across the table into one of our plates when he got excited.
-Benny took his first steps around 5 or 6 years old, which made me around 8 or 9. I was old enough to be there and feel the excitement as he took wobbly steps across the living room floor.
- Growing up we always had to keep my stuff picked up if I did not want it chewed on… I lost a lot of crayons to Benny’s mouth.
-Whenever I was busy doing something on the floor Ben would be right there with me sitting as close as he could while looking over my shoulder…
-I will always hold onto the memory of the countless afternoons I spent cleaning my room with Ben in there with me. We would listen to music and as I cleaned Benny would chew my stuff that was lying on the floor.
-I also recall our family spending a few of Ben’s Birthdays doing two of his favorite things…sitting in the car while eating McDonalds cheeseburgers

But what I most want to share with you today is how Ben lived his life. He lived in humility and with great love. He experienced life with a humility that most of us can’t and won’t ever comprehend. Ben was made to be completely dependant on others for his survival and yet he lived his life with amazing grace. He was truly beautiful. And in his humility he loved me and many others with the purest love I believe I have ever and will ever experience on this earth. Benny loved people in the same way Paul talks about in 1 Corinthians,
Ben’s love was patient and kind. He was not envious or boastful or proud. Ben’s love was not rude and he did not insist on his own way. He was not easily angered and he kept no record of wrongs. Ben did not delight in evil, but he rejoiced in truth. He always trusted and his love never failed.
I feel incredibly graced by the Lord that I got to grow up with Benny and understand, experience, and know such love from a young age. Ben’s life has always drawn me to praise the Lord because I see God’s beauty, majesty, and mystery all wrapped up into who Benny was. And now in hind sight I can see how the Lord has been preparing me for this moment my entire life. God gave me the grace at a young age to not only receive and be conscious of Benny’s love for me, but also the Lord allowed me to love him back with the purest love I believe I have ever given. I can remember those afternoons as a little girl, cleaning my room, alone with Benny, the music playing and him chewing on something off the floor…and sometimes in those moments we spent together I would become overwhelmed by the love I had for Benny… and I would sit on the floor next to him, pull him into my lap, so that we were face to face with his legs wrapped around me. I would sit there and hold him close and then rock back and forth quietly telling him how much I loved him. Now as I look back on those times… I realize that it was God’s enabling grace since I was just a kid. Because of those kinds of moments with Benny I have no regrets. I know Ben knew how much I loved him…and I always knew how much he loved me. Benny was a picture of love to me. So today as we honor Benny’s life, as his big sister, the one thing I hope and want you all to remember about my brother is his love.