As all of you know when Connor was first born he went through a myriad of tests. He was also given a genetic test that came back normal. One of the main reasons I haven't really talked about this is because I didn't want people analyzing my child for things that looked different. Anyway, as time went on and he still wasn't progressing we knew something was up. Since Reno has NO geneticist, we had to wait for a doctor who only comes to Reno twice a year, lucky for us she happened to be coming a month after we met with a pediatric specialist. For anyone who has gone through this process knows it is pretty crazy! They ask every possible question and take every possible measurement of Connor possible. The blood work takes forever so we finally met with the geneticist again at the beginning of November and we were finally given an answer. Connor was diagnosed with 5p Duplication Syndrome. If you're thinking "Huh?" welcome to the club. Basically it is a really rare syndrome that can only recently be diagnosed as the technology is only about 3 years old. Unfortunately since the technology is so new the only information she was able to give us was based on 5 people who are worst case scenarios. Some of the affects of this syndrome is hypotonia (extremely low muscle tone - Connor's is pretty severe), sleep abnormalities (which is why he STILL doesn't sleep through the night), and varying degrees of mental retardation. Every parent wants their child to be perfect and I guess to be as "normal" as possible, so the initial shock of realizing your child will struggle is hard. On a more positive note the future is still so vague for what awaits Connor. Since they were able to diagnose so early he will be one of the first to get early intervention, which we know can only help. I still feel confused about alot but here is what I know for sure:
-It could be sooo much worse. I have so much respect for parents with children who are severely disabled.
-Going to the physical therapist, occupational therapist, nutrionist, pediatric specialist, and pediatrician on a regular basis WILL pay off (he is crawling now and starting to pull him self up!!!) :)
-Connor is special. There is something about him that sets him apart.
-Everything happens for a reason and I know it is by no accident he was sent to our family.
-It is good to talk about what you are going through because you never know who it might help or who might be able to help you in return.
I have developed a deeper understanding of the love our Heavenly Father has for us, and it is for that reason that I have faith that everything will work out the way it's suppose to.
Besides...who couldn't love a baby in a basket?
9 comments:
connor is so fortunate to have such a great mom (and although i don't know connor, i know you're fortunate to have him as a son). you are brave to share something so personal and i'm certain it will help someone.
Jessica! I am glad that you shared your story! I think you and your family will be so blessed even though at times it will be such a challenge....but you are right! He is dang cute (in a basket too!)
Connnor is a very special kiddo with a very special family. Blessings come in all shapes and sizes...hang in there.
Shanna
i love Connor and i love you.
I think you are the best mom for that little Connor! I love you guys!
You are such a great mom Kika. Conner is a lucky little man. I so wish we could have met him! Guess you'll just have to come visit us in England. :) Love Conner in a basket too, I'm going to put Tacey in one to take a picture now(like right this very minute I'm going to do it). Love you guys!
You are so brave to share something so dear to your heart. I have a friend that has a special needs daughter and compared her experience to planning a vacation. She said it was like planning a trip to italy. You dream about imagine how it will look, where you will go. But then when you get on your plane and you arrive somehow you ended up in holland. You are disappointed and shocked but holland is still beautiful and amazing. Just not quite what you were expecting or planning but equally as wonderful. Thank you for sharing your story.
I'm not gonna lie to you, I always thought Connor was the normal one in the family and that the rest of you are weird!
May I just say that Connor is the bees knees! I guess that's what happens when your baby's daddy is either Santa Clause or Jesus Christ.
I remember you telling me about this at the reunion choir concert, but I didn't get a chance to really talk with you. I know they are different syndromes, but I can remember my mother-in-law's story of when she found out my brother-in-law had severe down syndrome (and then autism). She said it was heartbreaking at first, very difficult for her because back then, they didn't have a ton of info to offer (similar to what you have experienced in your situation perhaps?) and then she began to be strengthened and feel like she could make progress. She said it was very overwhelming and increasingly difficult as she looked for and received the help that she needed with him.
The thing is, as hard as it was in the beginning, she realizes now that she would never have it any other way, and I can tell you, it has certainly brought a closeness and support within their family that would otherwise not have occurred--every single one of them LOVE that boy! It has also allowed them to grow closer to other people, as they have allowed ward members, and community members, serve in his needs. Others have also gained in the experiences of this down syndrome boy.
Basically, what I hope to offer is increased hope. It will be so wonderful for your family and you grown together through this experience, and I'm sure you will offer so much love, support, and compassion to others because of the life you live. It will also be very difficult at times, and very overwhelming. But I hope, and am sure, that the blessings will outweigh the hardships; at least at some point. Increased blessings and prayers to you and your family!
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