Tuesday Topic: The Prospect of a Scary Diagnosis

This week’s Tuesday Topic comes from Kirstine.  She has a very tender question that many of us will understand.

Our son is turning three and we are realizing his challenges might not be so temporary as we had thought. We have been so privileged to be his parents from the day he was born.  And through these past years we have told ourselves “oh, he’ll catch up” or “oh, just wait and see. In three months time it will be just fine”.  But as he get’s older we kind of feel stupid telling ourselves that for the 23rd time… As I said – maybe his challenges aren’t so temporary after all.

The doctors have suggested some tests/scans etc and we have agreed to run them. But is it just me, or is the possibility of a diagnosis scary? I guess it’s still hard to let go of the dream of a ‘normal family’. And I can’t help thinking we might get some pretty bad prospects for the future – what if the doctors come back with something like: “I’m afraid your son has *** so he will probably never ***”?

Has anybody else dealt with these thoughts? I’d love to hear from others who are further down the line.

Some of you will have answers to this question that are far better than mine.  Please take a moment to respond by leaving a comment.  We have a sweet fellowship here and I know that some of you will reach out to offer support and thoughts to Kirstine.

I am loading up the four homeschoolers and heading to Spokane for orthodontist appointments this morning.  I probably won’t be able to approve any comments until I get back in the afternoon, so if you don’t see yours, don’t worry.  Comments will show up this afternoon when I get home.

[On a side note – how I long for an iphone so I can blog remotely!!!  It is at the top of my Christmas list.]

Thanks, friends.  I’m so glad you are willing to share your stories and your hearts.

Lisa

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Let me introduce myself. Russ and I are the parents of twelve children by birth and adoption, and sometimes more through foster care. I'm the creator of One Thankful Mom which has been as much of a gift to me as to my readers. In 2011 I became a TBRI® Pracitioner* and have lived and breathed connected parenting ever since. I'm deeply honored to be the co-author, together with the late Dr. Karyn Purvis, of The Connected Parent; it is her final written work. I love speaking at events for adoptive and foster parents. I'm also the co-founder of The Adoption Connection, a podcast and resource site for adoptive moms. I mentor and encourage adoptive moms so you can find courage and hope in your journeys of loving your children well.

21 Comments

  1. Tricia
    September 25, 2012

    Dear Kirstine, my heart aches with you. It is difficult to incorporate reality and our dreams together. But denying what is, isn't healthy, for you or your son. One good thing about knowing what you are dealing with is that you can then do the best that you can to meet the true and real situation. I am talking to myself today as I have some fears about an appointment that my husband and I have this afternoon about one of our children. After several days of depression, some denial and bouncing up to try and see the best in the situation, I am now ready to have a hard conversation and try to be realistic and hopeful at the same time. I wish the same for you. Hugs. Tricia

    Reply
  2. Jenn
    September 25, 2012

    We actually just got the scary diagnosis for our son (age 5, home 7 months). Our story is still very much unfolding as we are so new to this. It's scary and sad and frustrating, but God is so good and so very faithful.

    Reply
  3. Joelle
    September 25, 2012

    I'm praying for you. I'm sure this is a very scary road to travel. While I have never been in your position I do provide respite care for a little girl with many challenges (autism, cereal palsy, mental retardation, legally blind). It has been a long, hard road for her parents since her birth at 23 weeks. BUT, and the but is huge, she is such a precious child. I have watched her from infancy prove the odds wrong. She walks, she talks, she can now spell her name, and she has such a fun sense of humor–all things she should never have accomplished according to the specialists. I pray that reality for you and your son is much less drastic but I also pray for peace to meet the challenges whatever they might be and to experience the richness that this son has to give to you–his gifts to the world are no less important than those of "normal" kids. Blessings as you take this one step at a time.

    Reply
  4. Erin J
    September 25, 2012

    Our daughter is blind, but we knew her diagnosis going into her adoption. In so many ways that makes it easier, because we did not have to adjust our expectations, BUT let me tell you something about raising a child with a scary diagnosis: your dreams don't have to die! Your child can still do wonderful things, amazing things, and is still a fabulous person. Yes, it's ok to grieve, but just yesterday, I read a Mom's "letter to myself two years ago" when she got her daughter's diagnosis. She telss herself what she wishes she'd known: that it's not as terrible and scary as it seemed at the time. There is also a great story out there called "Welcome to Holland" that describes life after a scary diagnosis. Blessings. 🙂

    Reply
  5. lori scott
    September 25, 2012

    Scary diagnoses take time to process, but the process, if we allow it, will become part of our sanctification. Our hearts truly believe that God is sovereign and knows what's best for us and for our beloved, yet we live in this fallen world where beauty and brains are valued and exalted. To live this dichotomous reality without going insane, one must plant themselves by the Stream which refreshes and renews hour by hour. We need to hide God's Word in our hearts so that our heads don't get muddled when we hear diagnoses that seem scary because they world in which we live has taught us that they are scary. I am saying this as much to myself as I am to you as I live with a sweet one whose diagnoses are still unfolding. Sometimes I am glad I didn't know the whole picture when she came home because I might've said no (out of fear) and missed the blessings. That doesn't mean it has been easy, but God IS ALWAYS faithful! Praying with you for the answers you seek and for the strength you need. 🙂

    Reply
    1. Julie
      September 25, 2012

      Lori, bless you for speaking truth and encouragement. We so need to be listening to the right voices!
      (And bless the other commenters, too! Such wisdom and hope.)

      Reply
  6. Carly
    September 25, 2012

    Kristine, The joy in knowing the diagnosis is that you know the diagnosis. I know that GOD is bigger than all of the diagnoses our boys have. Yes, there was/is grieving- deep deep grieving at the loss of a 'normal' future. Our challenge is now how do we make a new 'normal' for our family? After making the jump from brain damage- still existent- to the world of mental illness, we grieve again. That's okay. That's normal. Mental illness used to scare me, still does in some ways, but I am learning in a new way to trust that very BIG GOD of ours. Our children are not made any less in GOD'S image because they come from hard places, or have those scary diagnoses, they are still children needing attention and love from families who choose to bear with them. You are not stupid for not wanting the best for your child/children. The diagnosis, like Tricia said now you "can do the best that you can to meet the true and real situation." Again, it just needs to be a new normal for you and your family. Life is a learning process and I am praying for each of us to learn the most in each opportunity presented us. Blessings.

    Reply
  7. Erin H
    September 25, 2012

    Oh I understand completely. When a family member gently suggested testing when my daughter was 3, I was devastated – both that something might be wrong AND that I hadn't gotten "on it" sooner….
    Yes, she was positively diagnosed with 2 lifelong conditions – I cried. And mourned. And cried some more……
    Then I (we) decided that that her diagnosis does NOT define HER – and we try to live life that way. Everyone has challenges – some have a "diagnosis" and some don't. Yes there are areas she is/will be behind her peers, but that is not "who" she is.
    It was also hard when she was old enough to ask "why"….."why can't I do this" and to compare herself to others. I think my heart broke again……
    We are still living it (she is 9) but I can say FOR SURE that I am glad for her diagnoses as they bring help and understanding.
    Hope that helped…
    🙂 Erin

    Reply
  8. MRK
    September 25, 2012

    Yes, I've been there. When we got the actual diagnosis (benign congenital hypotonia for us), it was a vague one. I read blogs about kids who never learned to walk, who were still in diapers at age 6, etc. I was so scared of what he would never do. We've been lucky since then, and it has turned out that he is on the mild end of the continuum. Our fears of him never walking have been replaced by the reality that he is small and skinny with very little strength and endurance…at age 9 (the diagnosis was at 11 months) he is teased and excluded until a mama's heart could break. But he has great loves, a quirky personality, a keen sharp wit and mind….and he still comes downstairs every morning asking for mom to snuggle with him. My thoughts are with you.

    Reply
  9. Louise
    September 25, 2012

    I'd be honored to pray for the situation. The tests and subsequent diagnosis are important for the in-the-moment dealing and understanding. However, refresh your faith daily and allow yourself to see the tiny miracles. Surround yourself with encouragers. Avoid people prone to pity. They won't help you adjust and move forward. Don't allow the words "always" and "never" to be part of his diagnosis. God alone is in charge of forever. He is faithful.

    Reply
    1. Pam
      September 30, 2012

      I can't tell you how much this short reply spoke to this mother's heart. Thank you.

      Reply
  10. Anita
    September 25, 2012

    Dear Kristine,
    YEP…those thoughts have kept me from sleep at night. What if…it's this…or that… What if…it never gets better. What if…"this" is the rest of our lives. It's scary, and in all honesty, not really kosher to say in the adoption community. Which is wrong.
    BUT what if…the test give you a diagnosis that allows for understanding. What if you have access to services you wouldn't otherwise. What if you can connect him early on to intervention. What if, through your willingness to dig in and find out what is creating the delay, you are able to give him skills he'd miss. I'm not talking about 'therapy' to fix him. But a path to walk to meet his needs to grow and develop.
    Testing is scary, but I've found even the scary diagnosis, at least give us a path to start down. And part of that is accepting that my child will never do 'xyz'. But you will find as your child starts to respond to therapy, your heart will swell with pride and it will no longer matter what they aren't probably going to do.
    My bio daughter was given a dx at 3 of sensory problems. A year of OT made a huge difference. But through that process we were looking at much bigger dx that that. So we were grateful for the dx, and the treatment. She still has some limitations because of it, but we are so thrilled when she conquers a sensory issue that the limitation are forgotten.

    Reply
  11. Lori
    September 25, 2012

    I can relate to how you are feeling although our circumstances are different. We have three adopted children, all older when adopted. All of them have varying degrees of issues that may or may not affect them in the future. I have always felt like the more information you have the better, but you can't let a diagnosis or even a medical professional's pronouncement of their idea of your child's future squelch your hopes and dreams for your child. Each child is different and each situation is different.

    So, there is a fine line you walk, I suppose. You take the information because it better equips you to give your child any special help they need, but you remember that it is all in God's hands. The fine line is also remembering what your child's issues are and what some of the maybes are for the future. You can't ignore it. I am just a very practical person. What comes along is what it is and you do your best with what it is.

    I think I have a slightly different perspective because I have lost a child to death. It was an accident, nothing to do with a medical issue, but your thinking changes. You see life with more wide open eyes. You learn to be thankful for every day and you learn to trust in a sovereign God Who is in control of all things. I am learning (I cannot say I have arrived!) that what the future holds is in God's hands and it is what He has decided is best for us. We learn and grow through all of these life challenges – they make us better people.

    I do not mean to discount the grief you are feeling about your child's future and it being different from what you had dreamed. That is real and you can't ignore it. So you must address it as part of your being able to move on and help your child in whatever way they need. Don't ignore your own grief and completely submerse yourself in caring for your child. See a counselor or make a regular time to share and pray with a friend who understands. You are important too! I hope that helps in some small way.

    Reply
  12. Janell
    September 25, 2012

    When my bio son was 2.5 he was diagnosed with autism. It was a gift. Once we had the diagnosis, we were able to understand how to help him. We were able to get services and therapies. He entered our school's specialized pre-school, and we got him in Speech, Occupational and physical therapy. Don't let fear stop you from knowing the truth. It will set you free, as well as your child. It can help other understand his or her quirks and be more compassionate.

    By the time my son was 6 he no longer qualified for the diagnosis. All those hours of therapy helped him heal. He learned things concretely instead of inuitively. We now know he has an auditory processing disorder. It can't be diagnosed accurately until a child is 8 or 9, but those early years of support, education, and therapies saved my son from isolation and helped us be better parents.

    Yes, its overwhelming at first, but then you learn more and you do more research and you connect with communities and other parents and then it isn't so scary anymore.

    Reply
  13. holley
    September 25, 2012

    This question is difficult. Our adopted son has an epileptic disorder, and epilepsy was the one medical issue that I said I didn't want to willingly adopt (and we didn't know when we brought him home). We did not anticipate the diagnosis, or the long term ramifications. He is very likely, on any given day, to lose his ability to speak and to lose his cognitive function. When we received this diagnosis, we didn't talk about it with anyone outside our immediate family for 4 months. It took us that long to embrace the high potential, and to come to a place where we felt we were ready to deal with it if it happened, and we could talk about it without being uncontrollably emotional. All of that to say, we received the diagnosis 1.5 years ago, and we have yet to see any decline. We know it can change in a moments notice, and thus we enjoy each moment and each day to its fullest. He hasn't changed, his amazing spirit hasn't changed, and I don't think it would be healthy to treat him any differently than we did the day before we learned all this.

    Reply
  14. holley
    September 25, 2012

    _My advice to you would be to know that God is walking hand in hand with you. He is a gentle, good God, and though the diagnosis could be hard, he will gently carry you through whatever it is. Epilepsy is the one thing I said 'no' to (on adoption paperwork), yet God has since removed my fear about epilepsy, and he has carried us through each step of the journey. With your eyes and heart set on Him, you will be able to walk through anything.

    Reply
  15. Linda
    September 25, 2012

    We foster/adopted two children with FASD and other mental health issues. Because of this, we have had quite a few times when we have received yet another diagnosis. And each time, there has been some grieving. If I look at the statistics, it can get a bit depressing. I go through all the grieving stages, over and over again. But after a time, I use the diagnosis to research how to help the children. I like to see the diagnoses as tools to help me better raise the them, rather than a condemnation. For instance I knew, after years of teaching my daughter, that it was difficult for her to do her schoolwork and think through consequences of her actions. But it wasn't until after she was diagnosed this year with having an IQ range of 50-70, depending on the area, that I knew for sure that I was dealing with a "can't do", rather than a "won't do." The diagnosis has given me permission to not panic and push too hard as she is slowly falling behind her peers academically, but to adjust our homeschool curriculum and get help so that we can better raise her to her potential. I really wasn't an awful homeschool mom and, considering her mental abilities, she's doing really well!
    Diagnoses also sometimes help in getting much needed supports from the community. Diagnoses can be scary, but they can also be a blessing and a help.

    Reply
  16. jacqueline
    September 25, 2012

    The diagnosis does not "change" who the child is – but the label given can change the opportunities the child has in a positive manner. Once there's a label, services, etc. can be offered often times. I do get the "grief" that one feels – I too experienced this – but was pleasantly surprised that there was a positive side to the diagnosis and that what the supports that could then be put in place for my child

    Reply
  17. sleepyknitter
    September 25, 2012

    Yes, definitely been there! We committed to adopting a ten-month-old boy, then gradually began to realize before he came home that he probably had Fetal Alcohol Effects. I was devastated and terrified. During that same time, we were slowly beginning to realize that our first adopted daughter, almost three years old at the time of our son's adoption, was developing Asperger's Syndrome. I had not "signed on" for special needs kids, not mental/behavioral, anyway, and I was just devastated and grieved deeply for months as it seemed like our family and our lives were falling apart around us as our two children displayed such deep needs. Funny, just five months after our little FAE guy came home to us, I "fell in love" with an eight-year-old girl with CP and adopted her. We are now definitely a special needs family! It turns out that our youngest daughter has attachment issues rather than Asperger's, and though our son definitely shows signs of FAE, he doesn't (YET) show the kinds of signs that can tear apart a family, so in a way I have been granted a brief reprieve while I collect myself and decide that yes, this is who we are and what we are about. Yes, I am going to give up the majority of what I had considered to be "my" life in order to meet the needs of these three children whom we love so deeply. I'm still fairly frightened about what could be ahead with our son as he grows older. Often the "effects" of Fetal Alcohol Effects don't really begin to show up until a child is five or six, so I know that our life could still take a drastic turn with our sweet, loveable, intelligent boy. I am preparing spiritually for battle, I guess you could say. And I do struggle significantly and painfully with our youngest daughter's attachment issues, and I am gradually realizing our older daughter has more attachment issues than we'd first suspected — she's such a joyful, brave little person that it is easy to overlook her attachment issues. There is still lots of scary stuff ahead with all three of our treasures. But I guess as we're muddling through all this, we're making some sort of peace with it through God's grace and deciding that this is who we are and what we're doing for the next fifty or so years. If we make it that long! 🙂

    Reply
  18. Kirstine
    September 26, 2012

    Thank you all for your comments!! It is so very encouraging to read. And humbling too – most of you are dealing with much more complicated issues than I am. And yet I can relate to so many of your thoughts.
    I have very few friends who deal with similar issues, so this is very helpful for me. Thanks again.

    Reply
  19. blesseday
    September 30, 2012

    Lisa, a chain of blog readings led me to write something this morning that I wanted to share with you. It is on a heart issue that is relevant to this post, which is why I am sharing it here (knowing you are likely the only one to see it anyway, given that it is a post a few days old.) I know you are busy with plenty to do and read in a day, but if you stop by and read it, I just wanted you to know that you are one of the moms who was in my heart and mind as I wrote. Your love for your children–all of them–is so beautiful and so inspiring. I pray for your family and am so thankful for moms like you who not only bring orphans into your homes, but who blog about it with honesty and grace and vulnerability so the rest of us can learn and be spirit-grown.

    http://www.oblesseday.blogspot.com/2012/09/adopti

    Blessed

    Reply

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