I love blogging about Aaron the way that I’ve been able to do over this past year and two months. Sharing Aaron with all of you, and our life with Aaron, is a joy and a privilege. I sometimes wonder who is reading, and I wonder if the blogs are a blessing, or do they ever come across as same-old, same-old……….or shallow……….or silly……….or making light of a serious situation. I know that many parents of children with special needs really don’t have many reasons to laugh or even smile. Their lives are full of the daily care of children or adult children who need lots of care. Days are exhausting and nights are too short. There is rarely any humor such as we have with Aaron. Aaron happens to be very verbal and at times, very funny. Yet there are many seasons of frustration and tiredness for us as well.
My main purpose for blogging is to share with all of you that even in the midst of cares and burdens, and the heartache of having a child with special needs – we can choose to see the good, or the humorous, and to take the time to learn the lessons that God wants to teach us. I am blessed beyond measure to share these thoughts and lessons with each of you.
Last week I was very touched and very encouraged to hear from a special friend via Facebook. Doretha Weyant and her husband Brad crossed Gary’s and my path many years ago at Piedmont Bible College. We have reconnected through Facebook and have enjoyed getting to know one another again. Doretha and Brad have been a sweet testimony to me, and have given me permission to share their story. We have communicated a lot on Facebook for a long time, but last week I got this inbox message from Doretha………..and it just blessed my heart to pieces. She said:
Patty, I thought of you and Aaron yesterday at the doctor’s office. I had gotten on the elevator to go to 2nd floor and a mom with her 2 kids was on there. One looked maybe 8; the other a teenager. The oldest boy said some strange thing very loudly and then went over and hugged his mom. She looked at me and I just smiled at her. We got off the elevator and they were coming to my dr. as well. They sat right behind me in the waiting room, so I couldn’t see them but could hear them. The oldest boy was very loud and kept saying hey mom, hey mom, over and over til she would respond. Then he would tell her all kinds of things from his day, doing so in a rather loud voice. I sat there wondering if he had the same disability as Aaron. Then I went in to see my knee dr. While in there I found out he had Down Syndrome. I thought of your blogs about Aaron and I wish I could have encouraged the mom, but didn’t see them anymore. Just know that Brad and I think of your family quite often and pray God will give you His grace to carry on with your many trials in life. Aaron is a special guy and God has a wonderful purpose for him here on this earth. Love ya. Doretha
The thing is……….Doretha wrote me this note on the day that marked the one year anniversary of her own son’s passing to heaven. This made her encouragement to me even more poignant and meaningful. Let me allow Doretha to tell you about their precious Ben:
Ben had Duchenne Muscular Dystrophy which is an incurable genetic muscle disease. He had a mutation on his dystrophin gene, a very large piece of the genetic exons were missing. Dystrophin is the protein that basically keeps the muscles from falling apart. He was diagnosed at 7 yrs old and we were told that he would be in a wheelchair very soon and life span was no more than late teens to mid 20’s. But when you are dealing on a daily basis, as you know with Aaron, you don’t think much about the future.
Ben had a very loving set of parents in Brad and Doretha, and his siblings as well. He had many friends and a wonderful extended family, as well as church family. He was blessed, but I’m sure that he WAS a blessing as well – a huge blessing from all the comments and the pictures that I have seen. Doretha continues:
October 3, 2011 at 12:55 in the afternoon, as Brad and I sat next to Ben, the angels came and carried him from his earthly home to his Heavenly one. This past year has been the most difficult year of our entire lives and I have shed more tears than I thought possible. We never realized how hard it was going to be to lose our child. We knew since Ben was 7 yrs old that he would not live past his 20’s. But, knowing it and experiencing it is two different things. Brad and I have been blessed with 4 wonderful children, 2 in Heaven, 2 on earth. Thank you Father for our blessing of Ben and the Godly life that he showed to all around him. We know we will see him and Christina very soon!!
I cannot imagine the pain of that moment, and the pain of the days following during this past year. And did you notice that Doretha mentioned yet another child in heaven as well? Again, here is Doretha:
Christina is the identical twin sister of our daughter Katie. In 1983, when I was pregnant with them, the medical field was just beginning to know about the problem I had with them. But they didn’t know how yet to fix it. It is called Twin to Twin Transfusion Syndrome. You can look it up if you are interested in knowing more about it, but it’s when one baby becomes more of a host baby and the other becomes the donor of food and nutrients and blood supply. The one baby gets bigger and bigger, while the donor baby does not grow after a certain time. This is pretty rare, but at least they know how to go in and fix it so that the babies have a better chance of survival. So, we knew we were having twins. They were due on March 25. We found out by mid January that Christina had died. Katie and she came a month early on Feb. 28. Since Christina was so small the body starts to absorb the dead tissue. Our doctor advised us that we did not want to have that in our memory. So, we donated her body to the research department at Bowman Grey School of Med. They were doing research on this very thing, so we thought that was best. We have never seen our precious Christina. But since they were identical twins then she looks just like Katie.
Again, when I read Doretha’s words I realize that this precious child, Christina, was bone of her bone and flesh of her flesh. She and Brad had such loss at this time………and then later to have loved Ben for all those years, and have to let him go when God called him to heaven. Are Brad and Doretha bitter? Are they angry at God? Are they jealous of others who still have all their children, or even of me as I write about our daily life with Aaron? You decide as you read what else Doretha told me:
Do you ever wonder why God gave Aaron to you and Gary? We have often wondered why God allowed us to have these strange diseases in our family. Guess we may never know. But, I’m glad that the Lord knows and gives us the strength to endure all these things. Keep up the blogs. I really like reading them!!
Two things stand out to me in Doretha’s words: First, the Lord knows. Yes, He does indeed know about our special children. He knows why they were allowed to be like they are, as fearfully and wonderfully made as any others. God is sovereign and even when He doesn’t bend down and tell us the whys of His doings, we can trust that all these things are somehow for our good and for His glory. I believe that often our special children are here to draw us to God in a way that no other person or situation can. What an honor and a calling!
Secondly, Doretha said that God gives us the strength to endure all these things. Oh, is that ever true! How could we ever do it on our own? “For His strength is made perfect in weakness!” We don’t know how weak we are until we are at our end and we fall into His arms, and let Him take over. Complete trust………..complete relief.
Thank you, Brad and Doretha, for letting me share a part of your story and a part of your heart. Thank you for being a strong testimony of God’s faithfulness in your lives. Thank you for allowing your pain to bless us. I look forward to meeting Christina and Ben in heaven some day!
|Brad, Doretha, and Ben|
And I will continue to write as God leads and pray that He will direct my words to bring honor to Him and encouragement to weary, questioning parents.