Remember when you were 20 and would think about your future? What would you do with your life? Who would you marry? How many kids would you have? Where would you live? Although most of us don’t fully match our hopes to reality, I can honestly say that my personal outlook at that age was not too far off from what I have now. Of course, I had no idea of what we would face with the birth of my second child, Elise, in 2004. Fortunately, all these years later, our present is just as good as any future I could have dreamed up. As crazy as that sounds, the story of our family, and our daughter’s incredible journey through a life with severe brain injury, is amazing proof to me that wherever you land in life, whatever cards you are dealt, the Lord is in control. He is our key to happiness, and our daily joy lies with Him.
My name is Ashley Haden, and I am married to my college sweetheart, Chris. We have 3 children: Lane (Lane-Brain), 10; Elise (Sissy), 9; and Ty (Ty-Bo), 4.
This is our story (in a nutshell)…
When I was 4-months-pregnant with my middle child, Elise, my doctor discovered by ultrasound that Elise was infected with Congenital Cytomegalovirus (cCMV). Almost everyone gets this virus by the time they are an adult, but it is usually only a serious matter if a mom gets it in her first trimester. Although I suffered no symptoms of CMV, Elise was profoundly affected. This insidious virus attacked her brain. Beginning at her birth, and continuing through the first few months, we gained the broader picture of how our sweet baby girl was affected.
Elise has a severe brain injury. She is deaf and blind. She also has Cerebral Palsy, which resulted in her not being able to sit up, crawl, or walk. Elise also suffers from epilepsy and extreme cognitive delay. She is my “forever baby” in the body of a 9-year-old. Elise is “full care”, which means that she will be fed, medicated, bathed, dressed, provided therapy, and most importantly, LOVED on by us, her family, for the rest of her life. Although devastating, this fact has solidified the meaning of unconditional love for me as her mom!
Bottom line: Elise was given to us by God and it is our responsibility and duty as her parents to provide her with the best life she can possibly have here on earth. He has also used our baby girl to touch so many people in our community, church, and family.
If we ever prayed for patience and strength, this is NOT what we had in mind. But that’s just it! Life doesn’t always turn out like what we have in mind. By no means has Elise’s life torn my family apart. It has saturated our lives with the need for God and all of His mercy. This is wonderful! We have been given an incredible task. A blessing disguised as a obstacle in our race of life.
With God leading us, we are ready for the challenge!
Wow!!! you can really tell it like it is. I know how this kind of example can touch others. We both have seen how this happens--and it was not in our thoughts at the beginning. It all about the "WHOSE" we are. You have carried you ability to witness in a new level. I pray for you and your family as you charge ahead in your unique journey. Blessed th be a blessing. Hugh
ReplyDeleteThank you for your openness and taking the time to share your story. You have helped me learn about CP in a way that no medical website, journal article, or book has been able to do. I am a nurse working on a school (RN-BSN) project about CP. Ashley, your optimism, strength, and love for life and your family is not only informative, but also beautiful and inspiring. I hope I'm half the mom you are one day!
ReplyDeleteLisa, I can't tell you how much joy I get from your comment! I always write with the idea in mind to help others out there. I usually assume it is parents and caregivers that find useful information, but it is such a wonderful thing for me to know that someone like you, a nurse, could be helped by my posts about Elise. I hope that our experiences and the lessons we have learned through the years with her gave you a unique view into this world of CP! Your kind words have made me smile...
DeleteThank you for sharing your story. I love the comedy in your family throughout the struggle. I pray for strength and endurance for each family member and Elsie abilities to increase and a everlasting love in your marriage. Be bless and Thank you.
ReplyDeleteI came across your site while trying to find a resolution to my own daughters headbanging. Today she banged so hard on her jogger stroller she is going to have a black eye tomorrow. trying to find a solution used neck rings now thinking of putting a more limiting headrest on her wheelcahir but worried it will make her bang when in other chairs the floor etc. Glad to have found your site, we are not alone in this!! Kristine
ReplyDeleteKristine, isn't it great when you find someone going through the same thing as you? Especially when it is something so unique. I hope you can find a solution for your daughter. What I have realized, is that there's usually not a final "solution", but rather, it is a continuing process of finding a better way to do things as they grow and change. Glad to hear from you!
DeleteAshley, meeting you today at clinic was a breath of fresh cool friendly air on a stifling busy heartbreaking August morning. I am so glad I met you and I am refreshed by your words here. I am your friend and sister in Christ.
ReplyDeleteHello! I am so glad to hear from you! It was such a blessing to meet you and your beautiful boy at Children's the other day. I don't usually engage with strangers that way, but our "How a Toilet Works" book opened the door to conversation :) I will add you and your son to my prayers...
DeleteI am a certified teacher for over 27 yrs working with children with Special Needs and Learning Disabilities. I have homeschooled all three of my children who have all graduated. My middle son had a severe brain injury when hit by a car at two years of age. The Lord has directed my path throughout my life to where I now can extend my knowledge to others on a wider scale. I know that each situation is very unique and that you have most certainly accessed the best therapies etc for your daughter. I also know that many families are still searching for answers. This latter , is why I thought I would extend an avenue that you may want to consider. I have recently taken an extensive course by Dr Rob Melillo on Childhood Neurological Disorders and Learning Disabilities. His work on primitive reflexes is very extensive and respected in the world of neuroscience. It is the cornerstone of unlock the potential of brain development. As you know , God has made the brain in an intricate and fascinating manner and certainly the virus she contacted disrupted typical development. If you have not tried any primitive reflex work I would encourage you to do so. If you have - hooray! Much of Dr Melillo's work also centers around stimulating the right hemisphere (especially for kids who can't feel themselves). This is OFTEN the root reason as to why kids self harm....it is there way of feeling themselves. I was looking for info on the vibrating snake when I was led to your site....I don't think it was a coincidence. God bless!
ReplyDeleteEverything alright? No updates since 2015, beginning to worry.
ReplyDeleteEverything is great! Elise is now 19-years-old and still bringing our family joy. Thank you for checking in. I didn't see many comments from several years ago up unitl now, so I am catching up!
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