It's a phrase I find myself saying a lot these days as I struggle to explain our children's special needs to others. As Ashton gets older, his challenges become more obvious to the general population. I know... I'm not obligated to explain anything to anyone, however in almost daily conversations and interactions it is usually necessary to some degree. I don't necessarily feel the need to 'explain' our situation as have others understand it. As of late, our family challenges seem to attract extra attention in public places from onlookers who are admiring the charming petite boy trying so hard to walk with assistance so he can keep up with the big kids. We hardly ever encounter ridicule or snide looks, but they happen too.
Ashton's case in particular is incredibly complicated, mostly because we have no map for his journey and a sporadic grouping of symptoms -that at first glance seem unrelated. It's easier to feel comfortable with Owen's slow and steady progression... Ashton's past progress has been well documented and is providing a sort path for Owen. I was reminded of this at the doctors office today during Owen's one year check-up. I will never forget filling out the milestones/skills worksheet for Ashton at his 6, 12, 18... month appointments and feeling so ashamed of the milestones he had not yet mastered. Every 'no' circled made me feel like a failure as a mom. At that time we were not yet aware of what was going on with Ashton's body or brain. He was our first baby, we were new parents with lots of self doubt. We were only seeing the decline in his skill mastery and we easily let it define how successful we were as parents. We visited specialist after specialist that looked at me with ridiculing eyes and asking question after question about how my husband and I cared for him. It was mortifying. He was 'normal' at birth and slowly lost mass until he was tiny for his age, he was not growing and not mastering skills. He was verbal and obviously intelligent, but at such a young age that seemed like such an insignificant win. While he was very social and beamed love, I knew why we were constantly asked about his care- he looked like a neglected baby. I logged every morsel of food that he ate and every ounce of formula he took in and calorie content of everything, still we struggled to convince any specialists that his size and lack of muscle tone was unrelated to his diet or general neglect.
In time and with lots of practice we have slowly met many of his toddler milestones- independent sitting, crawling, pulling to stand, cruising, self feeding... It wasn't until we had Kiera that we learned you don't have to 'teach' your baby everything! We had no idea that babies would roll, sit, self feed,... on their own for the most part- without hours of practice and prompting! Just before Ashton's second birthday we were thankfully referred by our primary doctor to the Mayo Clinic system in Rochester, MN. We went through some of the same initial dietary and care questions and actually had a Gastro doctor recommend he have a feeding tube, despite adequate caloric intake and normal gastro activity. We thankfully declined. The first few visits to Mayo were exhausting, Ashton was turned inside-out. It was at Mayo that we finally were able to identify his pituitary malformation- a cornerstone to his puzzle. We are thankful to say that today we are on the same page as our doctors. We are working together to manage his quirky symptoms as they arise. As a team, we understand the complexity of his symptoms and do not take for granted the milestones he is achieving. We have learned to greatly appreciate and celebrate the small wins -and we do!
I find myself endlessly searching on online forums and research pieces for others who can share the same experiences and symptoms as we have in our little family. Our geneticist at Mayo is very engaged with our family and is our partner in the research process. We are very lucky to have Dr. Ellison on our team and very lucky that nearly all tests only require a tiny bit of blood work with DNA extraction. To date Ashton has only had to have a single blood draw for genetics testing. Mayo only uses minute amounts of DNA extracted from his blood for each genetic test -they keep his blood in the cyrogenics lab so additional tests can be taken from blood that Ashton gave over a year ago.
While we don't know how his particular pituitary malformation affects all the systems of his body, he presents symptoms that we have not yet been able to tie to a diagnosis. Ashton will turn 4 on February 8th- he is not yet able to walk independently, his muscle tone is greatly decreased when compared to his peers, he has a odd- almost labored breathing pattern, along with other quirks. It's hard to know if some of those quirks are diagnosis related or just our super intelligent boy trapped in a body that isn't working the way he needs it to? Despite Ashton's motor challenges, he is incredibly smart. He has cultivated and mastered many advance skills, we believe as a result of his deficiency in other areas. His bright eyes and cheerful nature easily wins hearts and the compassion he deserves.
One of our biggest struggles is- the future. We have no idea of what the future holds. I don't want to see the future and don't wish it to change, but I do wish for an outline. Most parents see their kids futures in milestones- preschool, gradeschool, driving, dating, graduation, college, career.... I hope and pray for those things everyday, but the reality is- we don't know what the future will bring. I know, none of us do. Tomorrow isn't a guarantee, but a gift- I just wish to see the shape of the wrapped box or the color of the wrapping paper.. or maybe just give the box a little shake to guess what's inside!
Our primary challenge as parents we have when trying to help others to understand our boys medical needs is the absence of a diagnosis. While some would see a diagnosis as a prison with stigma's attached, we see it as freedom. I know many parents who's children have been diagnosed with lesser forms of a particular affliction and struggle with the stigmas that the particular diagnosis carries with it. My husband and I are both aware of the sliding scale and degrees of affliction, but we also know the relief and sense of future it will bring. The collection of symptoms that Ashton presents seems unsensical and confusing to most, his doctors included. The lack of a diagnosis alienates our family from other families and support groups that could provide us with the opportunity to relate and share experiences of the common affliction. When explaining Ashton's journey to inquiring people most focus on the obvious deficiencies. They just don't get 'why' he isn't walking yet, truth is- we don't know either and we try not to dwell on that alone. We don't know why his body is not working for him. We really only know one thing about Ashton's medically- his pituitary gland is malformed and not working to it's potential and requires supplement hormones. -just as Owen does.. like I've said before... They are not cookie cutter of each other, but defiantly cookies from the same batch :)
So, we continue to move forward and work on skill building. I feel like Ashton's walking abilities is the last major milestone that we need to focus on right now. The worldliness he will gain with independent mobility is going to be paramount for him. I look forward to the day (and will sob like a baby) when he can walk over to me and give me a hug. We try to minimize his frustrations while encouraging his gross motor skills, however he is almost 4. He has a mind of his own and can very clearly and very loudly communicate to us what he does and does not want to do. Ugh! ...slow and steady...
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not harm you, plans to give you hope and a future." Jeremiah 29:11
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