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To be or not to be…Diagnosed

This week while visiting with mom for a few days we were remembering some experiences from early on in our journey with Kimberly. During our conversation we recalled the seemingly endless vials of blood taken from Kimberly in her first few years, in the relentless quest for a Diagnosis. The quest for a reason, a syndrome, a group we could join, so than it would all make sense. So many days I felt as though we were totally lost. That helpless feeling seemed worse to me than the limitations that may be placed on us and her with a Diagnosis. The doctors seemed to believe, and I concurred, a Diagnosis would straighten out this pathless wandering. It would simplify our situation in that, we could focus. Focus on what Kimberly had/has, learn from others before us, and have some semblance of an idea as to where we were headed. Our "destination" would indicate what Kimberly's strengths and weaknesses might be as she aged. Part of me wanted this knowledge, and another, larger part of me, did not. At the time, holding my baby down while the phlebotomist extracted 12 vials of blood, I felt as though it was all so necessary. The answers we sought seemed vital. Ironically enough, the only answers we ever received were that she did not have any of the conditions, abnormalities, or disorders they were testing for. The MRI was normal. The sweat chloride test was normal. The EEG was normal. The comprehensive genetic testing was normal. The Mitochondrial DNA panels were normal. What was not normal was what she was experiencing: the delays, the low tone, the failure to thrive, and other issues I discussed in my first post. As we passed through year 1 and year 2 the doctors from various departments we visited began to regularly use the word mystery to describe Kimberly. Our sweet girl did not fit into a single "box" they tried to put her in, and I could see confusion as well as some frustration. I felt it too. Sometimes that "box" can be a comforting place. A place where questions are already answered for you. At least that is what you think. Truly, there should be no comfort in the "box". It doesn't really exist. Over the past few years I have come to understand that sometimes the worst thing you can get is a Diagnosis. I see family after family receive the devastating news "your child is autistic" (for example). This information is often crippling to them. They have a preconceived notion of what that means. What their child will and will not be able to achieve. Sometimes the doctors will even say such things as: "your son/daughter will never be potty trained, he/she will not communicate verbally, they will never live independently". As if they know this with all certainty. It is cruel and it can be incorrect. Others in the medical profession like to emphasize the considerable variability in the abilities of people with such a Diagnosis. They can't have it both ways. False hope is not what I am advocating for; however, hope and courage to try are essential...the courage to try and provide your child with the opportunities to be the absolute best they can be. If a Diagnosis allows for better health care or an easier time receiving appropriate services than it is a worthy goal. We have experienced that ourselves and know it is just how the system works. With that said though, it should never place limitations on or prevent a child or adult from seeking to achieve all that is possible. IMG_0278

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Comments

  1. She is KIMBERLY as you know and that is the most amazing gift we have been given. She can’t be put in a box and I’m so thankful. She has so much to teach us, as does Virginia! Amazing baby girls, will always be babies to me. Love you!

  2. All I can say is wow. I’m reading through all your posts about Kimberly (I found your site almost by accident) and I NEED to thank you for everything you shared and to tell you about my daughter, Jordan.

    She is my 2nd child. Born 2.5 weeks early via induction based on possible IUGR. Her birth was perfect and she weighed 4lbs, 15oz. Apgars, placenta and cord were all perfect. She was just tiny. She gained weight slowly but steadily and never needed supplements, tube feeding or had any significant reflux. Her suck was a little weak and it took her longer to finish a bottle but it didn’t seem that big of a deal to me. At our 6 month we’ll check, the ped was examining her and immediately was concerned about her muscle tone and lack of gross motor milestones. He said he wanted us to see a ped neuro. We were in the following day. The neuro confirmed the low tone but ruled out any significant disorders based on her reflexes. He said he wouldn’t really recommend an MRI to rule out CP based on his findings. By 12 months we asked for the MRI. He still said he didn’t think it was necessary but based on her gross motor still being significantly delayed, even with the PT she had been getting, he agreed so we could put our minds at ease. The MRI came back normal, as well as the genetic tests. We continued with PT. Progress was slow and she showed signs of sensory issues (aversions to her feet, scared of loud toys, tactile aversions), but I knew in my heart she could work through it. I also knew something wasn’t right and I searched and prayed for a diagnosis so I could ‘fix’ her. If I knew what she ‘had’, we could seek appropriate help.
    Two months ago (she was 27 months old) our Speech therapist asked if I’d ever heard of craniosacral therapy. I said no but wanted to hear more. After googling, I didn’t have high expectations. It sounded like a bunch of voodoo nonsense but I agreed to take her to a woman in our area. Within the first 15 minutes with Miss Jenna, my husband and I were in complete shock. We saw her disorganized little nervous system go from tweaked out to completely calm. She was laughing, playing, interacting and conversating (inflections in her babbling). Miss Jenna talked to us about what her little body felt like and it finally hit me like a Mac truck. I finally understood what her body was feeling. It wasn’t a diagnosis or a label, it was just ‘this is what she feels like’. We have been seeing Jenna twice/week and Jordan has made more progress in that time than her 20 months of PT. She gave me a book to read called Kids Beyond Limits, written by Anat Baniel who trained Jenna on this type of therapy. I can’t even explain it without sounding like I’m bought into something that I want so badly that I’m convincing myself of what’s not true. It IS true. It has brought us so much clarity and peace, knowing how to connect with what she is feeling, things to avoid and most importantly WHY she is the way she is. Why she responds the way she does. I’m now so thankful that we DONT have a diagnosis. I honestly feel like I could talk your ear off about everything we’ve been through, every little thing that I’ve analyzed, questioned, googled, suspected, lost sleep over…the worry and wondering may never end but that’s what being a parent is. All I want is to make sure I’m giving my kids what they need to be the best they can be. I finally feel like I’ve started to understand what I need to give Jordan so she can be her best.

    • Reading your comment brought tears to my eyes. I completely understand where you are with this and am so happy for you that your sweet girl is getting some of what she *needs*. Coming to the place where we see our children as having different needs instead of something being *wrong* with them is a really big deal. You are so right that the worry and questioning is just part of being a parent, yet it is certainly amplified for you and all of us who are traveling a path that is unlike those that are *typical*. You sound like an amazing mom and I would love to keep in touch with you through both of our journeys.

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