Where I’ve Been Lately: March 2016

(I started writing a What I’m Into post, but it quickly turned into this, so I decided to make that a separate post.)

March was full of amazing milestones with Felix. First time to the grocery story. First time to the library and the park. First time seeing dogs, chickens and cows. Amazing!

I wish I could have been filled with joy during all of these events.

Instead, I’ve been feeling nearly as much despair as I felt when we first got Felix’s life-threatening diagnosis.

We’re pretty sure he’s autistic.

I’ve had my sneaking suspicions since he was only a few weeks old, but recently one of his therapists expressed some concerns and now all of Felix’s little quirks and delays feel glaringly obvious to me.

Of course he’s autistic. Of course.

I go to sleep crying; I sleep fitfully; and I wake up with a deep sense of dread and grief. When we do go out and have fun I am constantly on the verge of tears. I’m never fully there.

I can’t think, I can’t cook. I can’t plan for the future. I am barely getting through the day.

This can’t be happening. Not again.

We haven’t gotten an official diagnosis, but I’m bracing myself for the worst. Autism runs in Ben’s family so I’m quite familiar with the symptoms. In fact, I’ve been quietly researching autism for years, half-expecting it to become relevant in my own kids eventually. I just really hoped I would never need to use it.

I’m grieving all over again. First we lost Felix’s infancy to SCID; now I’m watching my dreams for his future slowly die. Nothing is going the way I’d hoped it would.

I can feel that I have been absent from the world in the last weeks. I can’t seem to bring myself back. I still haven’t fully come back after those hellish months in the hospital.

Where have I gone?

I know in my mind everything will be okay and nothing has really changed. We love that baby so much and we want him in our lives desperately. God has been good to us.

But right now I’m just really, really, sad. I don’t know how long it will be before I am able to come back.

Maybe pray for me? And my poor family, and sweet Felix?

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Comments

  1. Kathleen,
    I am so sorry. I would be so sad too. Keep verbalizing or writing to someone, anyone, or no one. Just don’t shut down. You are not alone. You are going to blossom into something new. Will pray.

  2. Praying for you, sweet sister❤️❤️ And precious Felix. I’m so thankful he has you for a mama.

  3. Jackie Adams says:

    Sending big hugs and prayers your way. Hang in there, and continue to take it one day at a time. I’m so sorry this is happening :-(

  4. I’ve prayed for you many times and am honoured to continue to lift you up in prayer.
    I feel your heartbrokeness and overwhelming sorrow through reading this update.
    Felix is ever so lucky to have you as his mom.

  5. Praying for you and yours. I am sure that Felix is exactly who he was meant to be.

  6. Praying for your family, and for your heart.

  7. Praying for all of you! It’s so hard to go right into something else when still coming through another – and to have to adjust all of your expectations again.

  8. Oh, friend. I am so sorry to hear this. It’s a heavy reality to come to grips with. I worked with littles with autism for about 5 years doing ABA therapy, and although no mama wants it for their child, I know that children with autism can and do live full and beautiful lives and can have such a huge positive impact on the world around them – just like typically developing children. A diagnosis of autism will change your life and Felix’s but it’s not the end of it. Praying for you and him, that you would begin to feel some hope and know that not all is lost.

  9. Oh, and, forgive me if saying this is me speaking out of turn – but I wonder if seeing a doctor about taking an antidepressant for a season would help you get through this time. I’ve been considering this option for myself for my own reasons (just moved somewhere where I know no one, again, can’t have another baby…). Disregard if this isn’t something you’re open to of course. Hugs.

  10. It doesn’t seem fair, does it? After all you have been through, after finally getting to the point where you can be happy and free, everything gets pulled out from under you… again… I am so so sorry for the loss of your dreams, your happiness, your certainty, the baby you thought you had. Know that we understand that you still ferociously love Felix, which is what makes this so impossibly hard some times. The most direct route is straight through this grief. You will come out on the other side a stronger, yet different woman. I remember mourning the person I was before my baby was born with medical issues and a lifetime diagnosis. I mourned being carefree and happy, unweighted by my (then) current reality. It’s ok to feel this way. Don’t be ashamed to let others help you. They want to, and cooking, cleaning your bathrooms, helping with your kids is a tangible way for them to say “I love you.” Make a list of things you need done and have it handy when someone asks (or ask your husband to make it for you if you can’t). Ask for activities or crafts that your kids/daughter can do without supervision for when you need alone time (glue sticks, glitter glue, tissue paper, googly eyes, playdough, sidewalk chalk, etc). May God ease your pain, restore your joy, and refresh your spirit.

  11. Oh Kathleen! We love Felix and we love your family and we’re praying for you. <3
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  12. Yes, much love for you and Felix and your family. I will continue to hold you in my prayers.

  13. My 6 year old daughter is autistic, and I hear you saying so many of the things I said during the diagnosis processing is devastating. I knew at 18 months, and a he was diagnosed at 20monthds. And, yes, your dreams did die. It is like losing a child, and this will be the hardest most horrifying part of autism. But one day, you will wake up and realize that you lost something that never really existed…a dream. You will learn to find new dreams and hopes and goals. But now, today, this season, it will be the worst.

    Mourn your loss, and know that a new hope, a new, but different, life will emerge. That life will have value beyond compare.

  14. I’m a longtime reader and special needs mama to a 19 month old boy. My first impulse is to tell you, “it gets so much better! It’s an amazing journey!” And it is. But I also remember so painfully his diagnosis. I was devastated. I felt exactly as you describe for quite a while — grieving, absent, lost. Like you, I also dealt with health crises with him and experienced that same feeling of recurring psychological trauma. And so what I really want to say is … you need to feel all of that. You need to grieve because you are dealing with real losses. So grieve, but also be gentle with yourself, realizing that the grief you feel is proportionate to your love for him, because it arises from the intensity of your investment in his future and his well-being. Let yourself mourn: it’s not an indictment or a parenting failure to feel this way. It’s a necessary process that, if you embrace it, will culminate (I promise) in the most pure acceptance. Because that’s what being a mom is all about.

    I know you’re a big reader, so when you’re ready you might want to explore Andrew Solomon’s book, Far from the Tree (it’s about parents raising kids who are different in all kinds of ways). He also has two breathtakingly beautiful TED talks on the same subject.

    Wishing all the best for you and your family, from afar.

  15. Katherine says:

    Hi Kathleen! I just wanted you to know that I’m thinking of you and your family. I’m autistic and while being autistic in a neurotypical world has certainly had its challenges, but I love who I am and how I see the world. I might have unique challenges but I also have unique gifts and abilities. Tania A. Marshall had some amazing, inspiring books that I would recommend. They are mostly focused on aspergers in girls/women but so much applies to just ASD in general and gives beautiful insight into what’s it’s like. I still cry and struggle. But I’m also thankful of who I am. Learn from him about how he is experiencing the world and then when you can see the world how he does, you can teach him how to work through his unique challenges. Easier said than done, but I know you can get there. :)
    Email me anytime, if you’d like.

    Hugs,
    Katherine

  16. Hi Kathleen. I’ve been following your journey. Maybe, when you’re ready, you could reach out to other moms going through the same thing…it might make your journey might feel less isolated. Arming yourself with the knowledge of other moms experiencing this can be empowering and very powerful. I am praying for you and your family.

  17. Praying for you Kathleen. I’ve been following your journey for some time. Sending you much strength and guidance in this hard time.
    Remember: He is with you, and us. He takes your fear, your insecurities about the future and meets you. He loves you enough to meet you and be with you in your struggle.
    Hugs all the way from Down Under Australia xxx

    “be softer with you
    you are a breathing thing
    a memory to someone
    a home to a life”
    – Nayyirah Waheed

  18. Thinking of you and your family Kathleen! You guys really deserve a break. I’m sorry that you’re being tested so much. But yes, it will all be OK. Take your time to grieve now and then you will be open to moving forward with joy in your heart.
    Much love!

  19. I have been following you and Felix’s journey for a long time. You have been so brave, for so long. My son had a normal start of life and he started being delayed in almost everything, crawling, walking, talking… I was researching like crazy for fear of missing something, of not feeding him properly, of having done something wrong. Everyone around me was commenting on him being late, I was so worried. I can only imagine what it must be like for you, after having been through with so much already. Kids develop at different speeds, and some events in their life can seem to “pause” their development, and yes, it’s very worrying. All I can say now is that a 3, he has caught up with his peers and now that he can talk, I am more relaxed abut him being “normal”. And if not, what does “normal” mean anyway ? I have been suspecting for some time that I am on the spectrum and one of my brothers too (it was more obvious when we were young), and we have grown into happy adults, with our quirks and strengths and weaknesses. Neurodiversity is better understood nowadays, and there is so much that can be done to help people with autism, if it is the case. Felix will have a happy life because he has YOU, this amazing woman who inspires us, as a mother. Please keep us posted.

  20. I have just started reading your blog as our son has just been diagnosed with scid. All I can say is that Felix iis lucky to have such a wonderful mother as you. I believe you will get to love life again xxxx

  21. Donna Pineau says:

    I’ve been praying for you all since the start of Felix’s diagnosis and will continue. I understand your fears and anxiety but you are right, it will be okay. Autism touches so many. I have friends with grandchildren with autism. There are trials, sure but there’s joy and growth plus they have their own unique gifts as well. Autism doesn’t have to define who he is or who y’all are.

    Praying for you, sweet thing. You and your family have been through so much. But God does love you.

    Saw this just this morning –
    “For the Lord your God is living among you. He is a mighty savior. He will take delight in you with gladness. With his love, he will calm all your fears. He will rejoice over you with joyful songs.” Zephaniah 3:17

  22. Thinking of you, Kathleen. I am praying that your suspicions are off base, and the things you’re observing are just part of the SCIDS diagnosis and treatment aftermath.

    I’m sorry you’re suffering with this. Just when you think your worries and anxieties are licked…another (potential) bombshell. I know how dreadful days filled with anxiety can be.

    I also know how blessed and vibrant little Felix is. I can see joy in his eyes and that giant grin filled with life and hope (and he looks so much like Lydia!)

    Loving thoughts and prayers.

  23. I’m so sorry, Kathleen. What sad news.

    I pray that you will feel God’s presence, even in this dark, dark hour. And don’t be afraid to reach out for help, to let others be his hands and feet again. No one can do it all alone. You are not alone.

  24. All of my love and all of my prayers are yours.

  25. Stephanie says:

    Praying for you and your sweet baby boy!

  26. I am sorry to hear about Felix, but I want to encourage you to not see it as loosing- but gaining something new.
    I am autistic and for me it´s like stating that I have brown hair, or bluegreen eyes. It is not a diagnosis, it´s just how I am. Sure, everything is not always happy rosecoloured but I make it work and I am so proud of myself and how far I have come. I have my quirks, my faults, my nerding-into-something-knee-deep, my problems with how other view me and so much joy being secure in myself. If I had the chance, I would never choose to not have autism. It would take away so much from me being me.
    Getting the diagnosis was one of the best things happening, because it made it real and not just something I made up – it also gave me great help and courses and councelling and the works.
    Talk to your doctor, ask if there´s any special course or specialist you can talk to or if there´s a parentgroup close by – it helps to meet others and talk it out.

    When I was little I couldn´t stand being held and my mum said it was the hardest thing to just leave me be, but that when I chose contact it made her heart soar and that was worth every tear and made her try and find all my signals to understand me better.
    Which makes looking at old videos hilarious because mum acts like some sort of mindreader!
    LittleMe wrinkles nose – mum shuts of radio
    LittleMe starts doing “pianofingers” – mum gives me teddy
    LittleMe says “Fo Lepajas” – mum gives my sandwich to dad and makes me a new one with correct topping.

    You have a great heart and a powerfull will and you try your best, just focus that on giving a safe and secure ground for Felix and you will all turn out great!

    Feel free to email me if there´s anything you want to ask,discus or just scream about.

    We are all here for you and rooting for you!

    Keep strong!
    *hugs*
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  27. Oh Kathleen, I hurt for you right now. I’ve been in that place of grieving where diagnosis, events and trauma took everything I had until I felt like I was in a detached haze just watching myself go through the motions day after day. Loving my babies but not ever fully able to be present with them…I thought. But somehow, propped up by a few friends and my husband as well as some of the outside supports I desperately needed, we kept going. It’s ok to be heartbroken, fearful, and unable to cope or think or look at the future…it’s a shitty place that I hate but I had to accept that place before I could move forward with hope. You are loved. Your precious boy is loved and with you as his mama, he will thrive.
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  28. I love you Kathleen, and I’m here for you. Please call any time, tell me what you need, what you’d like. And know that I’m praying for you all.

  29. Kathleen, I’m a longtime reader and just wanted to let you know that I’m thinking of you and sending hugs through this difficult time. Take the time you need to grieve and process all of this however you can, grieving can be a long and random process. You can get through this and it will get better!

  30. My heart is with you, my prayers are with you.
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  31. ((Hugs)) Kathleen. You have been through so much. I don’t have anything to add, but didn’t want to read without posting. ((Hugs))
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  32. Oh, Kathleen. I am so sorry to hear that you are going through yet another round of turmoil and another life-changing diagnosis for Felix. Saying a prayer for you today.

    (Incidentally, I found your blog over a year ago in a middle-of-the-night Google session about night weaning a 2-year-old. Your post on that was just what I needed, and I followed your approach! So thank you for that. And then funnily enough I’m also a Menno, in North Carolina.)

  33. I am a teacher and have taught (and teach) children with varying levels of autism, in a mainstream setting. They are funny and kind and caring, just like the other children. Yes, they need extra help and yes, they react to things in different ways but so do the other “normal” children. There will be more or different challenges for you along the way but you will also have affection and love and humour and laughter and excitement at reaching milestones and all the other things having a child brings.
    A diagnosis is always tough but once you can get past the shock you will be fine.

    xx

  34. Hi, Kathleen. I have a son who was autistic as a toddler. I want you to know there is hope for healing. Through dietary intervention, supplementation, and lots of prayer and determination, our son is now officially off the spectrum. With all your knowledge of the gut microbiome, detoxification, and natural healing, you are already in a great position to treat your son’s autism. I’m not saying he will absolutely be completely cured, but there is a very good chance he can thrive with the right interventions. ABA can be very helpful in dealing with autistic tendencies, but it does not address the underlying issues of autism. Autism is a physiological illness and must be treated as such.
    I know this is devastating right now, but you are strong, smart, and brave, and God is with you as you figure this out. It will be difficult and scary, but in the end love and healing will prevail.

  35. I am so sorry that life is so hard for you right now. I wish there were something I could do or say to make it all better. Thinking of you and your amazing family and praying that eventually some good will show itself from all of these troubles.

  36. The term autistic has been used to describe wonderful highly intelligent human beings that most of society can not relate to. Meg Blackburn goes into detail in her books… Evolution and The Children of Now. We should be holding these children up and learning from them. They are here to teach us.

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