He used to be in love with his foot! |
When your child is born with special or complex medical needs, your experience as a parent is different. We didn't have the typical "honeymoon" phase with our newborn. A lot of his early months were seen through a lens of fear, uncertainty and worry. Not that we didn't enjoy our Tommy as a baby - we absolutely did! But those early months were just plain hard.
I didn't know where to go for information about Tom's conditions. Three years ago when Tom was born, most of the internet searches I did went like this:
- PHPV(Persistent Hyperplastic Primary Vitreous) also known as PFVS(Persistent Fetal Vasculature Syndrome) = Medical texts and research articles.
- Microcephaly = Medical definitions and texts, one foundation. The prognosis went from normal intelligence to severely intellectually disabled.
So loved! |
Today we have a son that is walking, talking (some), sleeping, and eating (some). We were told he might never do some of these things. We were told he might never be able to sit up! But he has done that and much more.
Tom has been through a lot. He has been through countless doctor appointments, procedures and many surgeries. He had a complicated start in life. As parents, his father and I did our best. We learned as much as we could and tried our hardest to advocate for what our son needed.
We were lucky to live close to great medical facilities and lucky to get some great care and advice. Tom's pediatrician notice something was different about his eyes when were still in the hospital after his birth. You don't often hear of eye issues being identified that early so I count us very lucky. Some of this was pure chance and some of this research on our part. We chose some good doctors and we did what we had to do to get the care Tom needed. We wrote letters to get approval for out of network care from our insurance company. We asked for help and we got it. After Tom's first surgery there were no less than eight packages waiting for us at home. I'll never forget the support we got then and I'll never stop appreciating the support we continue to enjoy from our friends and family.
At first we didn't quite know what to tell our family and friends because we didn't truly understand the situation ourselves. People knew there was a problem with Tom's vision but they didn't know much else. Tom was five-days-old when someone first said the word blind to me. I'm sure all his doctors though it from day one. They had been leading up to it but our retina specialist was the first person to really lay the situation out for us. It took me about a year and a half before I was truly at peace with his diagnosis. Fear was replaced by understanding and hope. Not hope for sight, necessarily; hope for a happy future for Thomas and for us.
I hope that by sharing Tom's story I can help other families who are learning about blindness and other eye conditions. Please check out the RESOURCE page to find information about the many resources out there for blind children and children with feeding tubes. If you find yourself reading this blog often, please become a member by clicking "Join this site" under FOLLOWERS on the right side of the page. You can also choose to receive emails of new blog posts by entering your email address in the FOLLOW BY EMAIL section at the very bottom of the page.
So thanks for following Tom's story! I also hope that by sharing Tom's story, more people will understand that he is more like other children than he is different. These days he wants to play outside and listen to Dr. Seuss on his iPad. He wants to have fun.
So when you see Tom walking by with his long white cane, don't just stare - say hello!
Thank you so much for your blog. My daughter is two and is visually impaired. It's been so wonderful to read about Tom and see how much he's grown.
ReplyDeleteThanks for writing this blog. I enjoy every entry and am amazed at Tommy's accomplishments.
ReplyDeleteYou might want to read the book Thunder Dog, by Michael Hingson. He survived 9/11 because he and his dog were able to navigate the stairs of the World Trade Center in the dark. The story of that day alternates with the story of growing up as a blind child with parents who encouraged him to try everything - including riding a bike around his neighborhood. When I was reading it I thought of you and Tom - it seems that you two parents don't look for limits, only possibilities.
ReplyDeleteThanks for the comments! It really makes my day when someone send me a comment.
ReplyDeleteIt's so nice to get feedback from readers and know that people find this blog is helpful and enjoyable.
I think someone else recommended that book to me before. I'll try to pick it up. Thanks!
I'm glad you started your blog! So glad! I started mine for the same reason. I never found real families faced with the same issues, and wanted to be able to put our life out there in case it would help someone else. I'm so glad for blogger!! :)
ReplyDeleteThanks for sharing Tom and your family's story! Our son (now 16 months) is also visually impaired. It's so encouraging to read how other kiddos in similar situations are doing so well, exceeding expectations and having a fun childhood!
ReplyDelete~Heidi