{"id":80,"date":"2022-07-16T01:13:00","date_gmt":"2022-07-16T01:13:00","guid":{"rendered":"https:\/\/prrf.org\/2023-2-18-what-to-expect-when-you-dont-know-what-to-expect\/"},"modified":"2025-03-16T23:56:01","modified_gmt":"2025-03-16T23:56:01","slug":"2023-2-18-what-to-expect-when-you-dont-know-what-to-expect","status":"publish","type":"post","link":"https:\/\/prrf.org\/de\/2023-2-18-what-to-expect-when-you-dont-know-what-to-expect\/","title":{"rendered":"Was Sie erwarten k\u00f6nnen, wenn Sie nicht wissen, was Sie erwarten k\u00f6nnen"},"content":{"rendered":"
\n

By Stephanie Brennell<\/em><\/p>\n

Has anyone out there with children not<\/em>\u00a0heard of the book \u201cWhat to Expect When You\u2019re Expecting\u201d?\u00a0\u00a0Written by Heidi Murkoff during her first pregnancy in 1984, the original edition has been updated five times over the years.\u00a0\u00a0Numerous spinoff works include titles such as \u201cWhat to Expect When Your Wife is Expecting\u201d and \u201cWhat to Expect the First Year\u201d.\u00a0\u00a0The website\u00a0www.whattoexpect.com<\/span><\/a>\u00a0proclaims to be the most trusted pregnancy and parenting \u201cbrand\u201d.<\/p>\n

I never read \u201cWhat to Expect When You\u2019re Expecting\u201d, or any other baby book, for that matter.\u00a0\u00a0My approach to most things in life has always been to sort of wing it\u2026and hope for the best.\u00a0\u00a0Perhaps by the grace of a higher power, I\u2019ve done pretty well so far – though there are days I wish a guidebook existed for those of us raising a child with a rare and unexpected diagnosis.<\/p>\n

I remember the shock and the crushing weight that came with our son Sean\u2019s diagnosis of Norrie Disease when he was four months old.\u00a0\u00a0I felt like my brain was melting down; I couldn\u2019t comprehend any information we were receiving from specialists.\u00a0\u00a0What in the world is Norrie Disease?\u00a0\u00a0I\u2019ve never heard of it.\u00a0\u00a0How can our child have this unfamiliar condition that I\u2019ve never heard of?\u00a0\u00a0How did he end up with it?\u00a0\u00a0And most importantly, how do we fix him?\u00a0\u00a0The unexpected diagnosis of a severe visual impairment in your infant is beyond life-altering.<\/p>\n

We are now seven years into our journey and one of the most important lessons I\u2019ve learned is that there is no easy \u201cfix\u201d for Norrie Disease, or any of these rare retinal diseases, but that\u2019s okay \u2013 our children were not born broken.\u00a0\u00a0There is no need to try to fix anything.\u00a0\u00a0You quickly realize that different does not equate to less.\u00a0\u00a0A child with a disability (or multiple disabilities) can be an amazing teacher for those who are willing to be receptive.\u00a0\u00a0There is certainly no one-size-fits-all approach when it comes to offering advice to other families.\u00a0\u00a0I\u2019m sure there are many helpful books out there, written by parents or experts on disability.\u00a0\u00a0I haven\u2019t read any, though I would be curious to know if anyone is promoting the #1 \u201cbrand\u201d on disability parenting\u2026.<\/p>\n

In this house, we march on \u2013 learning as we go, trusting the guidance from many experts in our circle, and loving our child fiercely.\u00a0\u00a0Below are just a handful of the lessons we have learned along the way that I offer as advice to someone new to the journey.<\/p>\n

Trust your instincts.<\/strong>\u00a0\u00a0Always.\u00a0\u00a0ALWAYS.\u00a0\u00a0If you feel something is not right with your child, pursue your gut feeling until you have concrete answers.\u00a0\u00a0You cannot afford to be meek and mild when your child\u2019s health and well-being and educational success are at stake.\u00a0\u00a0Don\u2019t worry about offending doctors, experts, teachers, case workers or therapists.\u00a0\u00a0Voice your concerns \u2013 whether related to a medical issue, a school issue, or anything else of significance – and don\u2019t stand down until they are addressed.\u00a0\u00a0Do not doubt yourself.\u00a0\u00a0You are the premier expert on your child.<\/p>\n

Connect with other families.\u00a0\u00a0<\/strong>This is so vital to do early on after your child has received a diagnosis.\u00a0\u00a0Yes, you will be knee deep in grief, confusion, exhaustion.\u00a0\u00a0But that is precisely why you need to reach out.\u00a0\u00a0I felt like I was drowning.\u00a0\u00a0I felt like my life had been stripped of all joy.\u00a0\u00a0I know it sounds strange but that\u2019s exactly what went through my mind \u2013\u00a0I just found out my infant son is blind, and I don\u2019t think I\u2019ll ever have anything to be happy or joyful about ever again for as long as I live.<\/em>\u00a0\u00a0What a ridiculous thought.\u00a0\u00a0And it certainly did not come to fruition.\u00a0\u00a0Sean brings us more joy in a single day than some people experience in a whole lifetime.\u00a0\u00a0But the point is, your thoughts and emotions will take you on a wild roller coaster ride.\u00a0\u00a0You need to connect with other families who know how you are feeling.\u00a0\u00a0Your friends and family will be an invaluable support system, but other parents and families who are in your same orbit can really help you to process everything.\u00a0\u00a0Search for support groups on Facebook, through local churches or hospitals, or do a Google search.\u00a0\u00a0We are connected to Norrie families all over the world through a Facebook support group which has been an absolute lifesaver.\u00a0\u00a0There are other parents out there who \u201cget it\u201d.\u00a0\u00a0Don\u2019t be shy with your questions, your frustrations, and your triumphs.<\/p>\n

Research, research, research.\u00a0\u00a0<\/strong>I never really enjoyed researching for my college papers and assignments, but I research now like it\u2019s my full-time job.\u00a0\u00a0I\u2019m currently researching things like local piano teachers who have experience teaching special needs students, best tasting liquid multivitamins for kids that can be snuck into apple juice (since Sean eats zero fruits, vegetables, or anything else with nutritional value), and what types of Medicaid waivers are implemented in different states in case we ever move from Virginia.\u00a0\u00a0There are so many things to look into on top of actual treatments, surgical procedures, and therapies.\u00a0\u00a0There are the medical issues and the non-medical issues \u2013 which are vast.\u00a0\u00a0Research everything thoroughly so you can make informed decisions.\u00a0\u00a0Ask for input from other parents.\u00a0\u00a0Read as much information from medical studies as you can understand.\u00a0\u00a0Browse through reviews of products before you buy them.\u00a0\u00a0Search for online patient reviews of doctors and specialists.\u00a0\u00a0Look up school ratings and reviews.\u00a0\u00a0Google information on the IEP process so you know what to expect during meetings.\u00a0\u00a0Most of this is common sense and you would be doing it anyway \u2013 whether you have a child with a disability or not, but I believe it takes on a level of heightened importance and the stakes are a little higher when you have a child with additional needs.<\/p>\n

Advocate, advocate, advocate.<\/strong>\u00a0\u00a0See above paragraph.\u00a0\u00a0Similar to researching, advocating for your child will become a (seemingly) full time job.\u00a0\u00a0You will be your child\u2019s voice, their cheerleader, and their champion until they are able to advocate for themselves.\u00a0\u00a0Whether you are at a medical appointment or IEP meeting, applying for some type of assistance or support program, or out in a public setting, do not be shy about voicing concerns or requesting something that is in your child\u2019s best interest.\u00a0\u00a0Question professionals (who do not know your child like you do) if they suggest a course of action you don\u2019t agree with.\u00a0\u00a0And seek backup if you need it.\u00a0\u00a0Hospitals and medical centers have patient advocates.\u00a0\u00a0There are professional educational advocates that can review IEPs and attend meetings with you.\u00a0\u00a0Use your resources and build your team.\u00a0\u00a0Raising a child with a disability is not for the faint of heart \u2013 and often you will be learning as you go.\u00a0\u00a0Effectively advocating is definitely more of an art than a science, but it\u2019s one of the most important things you will do for your child.<\/p>\n

Go easy on yourself.\u00a0\u00a0<\/strong>Don\u2019t beat yourself up for dropping the ball from time to time.\u00a0\u00a0For needing to escape every now and then.\u00a0\u00a0For not knowing what you don\u2019t know.\u00a0\u00a0It\u2019s hard enough to parent a child without a disability or any additional needs in the best of circumstances.\u00a0\u00a0Parenting a child with a disability or rare disease can feel like a herculean task \u2013 because it is.\u00a0\u00a0Keep an eye on your own physical and mental health and don\u2019t neglect your medical care.\u00a0\u00a0This journey is a long-distance trek, not a sprint.\u00a0\u00a0Stress and exhaustion will wear you down.\u00a0\u00a0Accept help when it\u2019s offered.\u00a0\u00a0Give yourself as much love and support as you are giving your child.<\/p>\n

Sit back and be amazed.\u00a0\u00a0<\/strong>Your child is a gift.\u00a0\u00a0All children are amazing and special in their own ways.\u00a0\u00a0All children are unique.\u00a0\u00a0We have three boys, and we adore each one for their individual personalities.\u00a0\u00a0We certainly don\u2019t have a favorite child.\u00a0\u00a0But I will say, without reservation, Sean has opened our eyes, our hearts, and our minds to a whole new world.\u00a0\u00a0We celebrate every little milestone mastered with him like we won the lottery.\u00a0\u00a0His pure joy exhibited daily, his sense of humor, and his complex mind leave us in awe.\u00a0\u00a0We love to watch how he experiences the world around him.\u00a0\u00a0We don\u2019t consider his visual impairment to be a showstopper.\u00a0\u00a0Sean is a gift.\u00a0\u00a0He is a teacher.\u00a0\u00a0And your child will be, too.\u00a0\u00a0Prepare to be amazed.<\/p>\n

_<\/p>\n

About the author:<\/p>\n

Stephanie Brennell is a parent and PRRF FAC Member<\/em><\/p>\n

\u00a0\u00a0<\/strong><\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"

Sit back and be amazed. Your child is a gift.  All children are amazing and special in their own ways.  All children are unique.  We have three boys, and we adore each one for their individual personality. We certainly don\u2019t have a favorite child.  But I will say, without reservation, Sean has opened our eyes, our hearts, and our minds to a whole new world. <\/p>","protected":false},"author":10,"featured_media":6670,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_coblocks_attr":"","_coblocks_dimensions":"","_coblocks_responsive_height":"","_coblocks_accordion_ie_support":"","om_disable_all_campaigns":false,"footnotes":""},"categories":[36,46],"tags":[33,29],"class_list":{"0":"post-80","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-blog","8":"category-parent-stories","9":"tag-family-advisory-committee","10":"tag-norrie-disease"},"_links":{"self":[{"href":"https:\/\/prrf.org\/de\/wp-json\/wp\/v2\/posts\/80","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/prrf.org\/de\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/prrf.org\/de\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/prrf.org\/de\/wp-json\/wp\/v2\/users\/10"}],"replies":[{"embeddable":true,"href":"https:\/\/prrf.org\/de\/wp-json\/wp\/v2\/comments?post=80"}],"version-history":[{"count":4,"href":"https:\/\/prrf.org\/de\/wp-json\/wp\/v2\/posts\/80\/revisions"}],"predecessor-version":[{"id":7996,"href":"https:\/\/prrf.org\/de\/wp-json\/wp\/v2\/posts\/80\/revisions\/7996"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/prrf.org\/de\/wp-json\/wp\/v2\/media\/6670"}],"wp:attachment":[{"href":"https:\/\/prrf.org\/de\/wp-json\/wp\/v2\/media?parent=80"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/prrf.org\/de\/wp-json\/wp\/v2\/categories?post=80"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/prrf.org\/de\/wp-json\/wp\/v2\/tags?post=80"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}