I’ve written a whole lot about how D has grown to be the little man he is today, and all of the struggles he’s overcome. Of course, I’ve told everything from my own perspective, but I haven’t blogged in detail about how I coped or felt through it all.
I initially thought that this whole thing would be a bump in a road that D would overcome, and I wanted to limit the number of people who knew about the horrible scary thing that would forever be in his past. I didn’t want him to be labeled “disabled” or even “special needs.” It took me a while to accept the magnitude of what had happened to him (and to our family). As I mentioned briefly before, I basically went through the stages of grief (denial, anger, bargaining, depression, and acceptance) several times, after each substantial development.
Mr T and I were very private and guarded for the first few weeks. We didn’t even tell our parents what had happened (beyond that D was born via emergency C section) until I let them visit me at the hospital 2 days after he was born. Just like us, I’m sure they didn’t understand right away. As we allowed a few close friends to visit D in the NICU, I told them then. I sent an email to my other friends when we scheduled D to get the feeding tube surgery, to explain why he was getting it – until then (6 weeks after his birth) they thought his only issue was prematurity. I cried so much when composing that email, and when I wrote updates to the HB boards, which were a big source of support for me.
Perhaps I was taking control over the one aspect I could – the information that went out. As time went on, I accepted more that this was going to be his story, and there is no shame or embarrassment in that. I came up with my own “script” for how to succinctly describe what had happened to the random people in our lives.
Although I now accept that I am a mom of a kid with special needs, I think that all the scary things that D went through, and all of the hard parts of our life that we don’t have to deal with anymore (like hospital stays, or the broviac IV, or weekly GI clinic visits, or weekly PT…may this list continue to grow!) and I feel just like me. The things that are still a part of our life (like the feeding tube and OT at home) are just that, a part of my life now, but like I’ve survived a great trauma. I obviously don’t mean to discredit D here; he is the one who has been through the most. Although at times the emotional pain, worry, and fear were hard to bear, I was never in physical pain. D has been in so much pain he once just quit breathing. I’ve had to hold him down to get poked and prodded, and that’s not even counting the 100+ nights he spent without us by his side in the hospital.
I don’t wish this experience on anyone, but at the same time, man it could have been much worse. I thank my lucky stars every day that D is thriving and that somehow Mr. T and I got through the rough parts (which I hope are all behind us) with our marriage intact. Honestly, it’s been weakened – not a topic I’m comfortable putting out there in detail, but we’re trying hard to get back to where we were before this tornado hit.
The advice I would give now to parents staring down the barrel of a LO’s chronic health disorder isn’t the most encouraging or insightful, but it’s the only advice that I found to be applicable at every step of the awful way. You have to continuously put one foot in front of the other, every day. Just keep going; you’re going to feel like crap some days and like you’re not doing what you should, but just do what you can. Even if (especially if) you feel like the most clueless and helpless person, your role as a parent is still so important, and you absolutely will grow into it. It is truly amazing what we (and our LOs!) can adapt to and thrive under. Someday this too shall pass, or at least, this helpless scary feeling will.
I hope that D can serve as an inspiration to those going through tough times, and a reminder to count your blessings for those who are coasting on by. May the worst of it all be behind us, for good!
D’s Journey part 12 of 13
1. D's Journey, part 1 - Premature Labor and an Emergency C Section by Mrs. Tiger2. D's journey part 2 - 1st NICU stay by Mrs. Tiger
3. D's journey part 3 - briefly home by Mrs. Tiger
4. D's journey, part 4 - Necrotizing Enterocolitis by Mrs. Tiger
5. D's journey, part 5 - 2nd NICU Stay by Mrs. Tiger
6. D's Journey, Part 6 - Intestinal Rehab by Mrs. Tiger
7. D's Journey, part 7 - home again! by Mrs. Tiger
8. D's Journey, Part 8 - Early Intervention by Mrs. Tiger
9. D's Journey, part 9 - Cerebral Palsy by Mrs. Tiger
10. D's Journey, part 10 - Physical Therapy by Mrs. Tiger
11. D's journey, part 11 - Eating by Mouth by Mrs. Tiger
12. D's Journey - My Perspective by Mrs. Tiger
13. D's Journey - A Giant Leap by Mrs. Tiger
blogger / apricot / 367 posts
Thank you for sharing your perspective! I have really loved hearing your story. I’ve also lived by that advice many times – just one step at a time… It’s good advice to get through the tough times…
blogger / pineapple / 12381 posts
Thank you for sharing! I’m sure you are aware that complex chronic conditions in children are one if the highest stressors on marriages. It isn’t a surprise that a majority of those families have experienced marital stress or divorce. That you’ve come through it stronger is a testament to your strength and resilience. I remember those early days and thinking that you probably weren’t yet aware of all the challenges that come. Now you are all too aware and able to share your strength and resilience with others… And that is a great gift! The kids, well, no one gave them the memo that they have challenges. They are just as tough as they need to be and thrive despite it all!
pomegranate / 3225 posts
ThAnk you for your story, and your honesty!
blogger / pomegranate / 3201 posts
Such a great post. Thank you for sharing!!
pomegranate / 3863 posts
Thank you for sharing!! Sometimes a parent truly bears the burden of their child’s illness. I went through sudden kidney failure when I was 10 and had a kidney transplant at 12. I’ve always believed that the experience was worse for my parents than me, especially now that I am a parent. It is such a helpless feeling.
I’ve been so happy to see so many positive updates about D’s development!
apricot / 442 posts
I just wanted to thank you for your honest and open post. Thank you for sharing!
blogger / pomegranate / 3044 posts
Thanks for the kind words everyone!
@Mrs. Jacks: yes, I’ve heard that many times! It’s more reassuring in a way – to know that it’s only partly our “fault” (due to some inherent incompatibility or something) and more a product of our circumstances, if that makes sense. And I can’t thank you enough for your continuing kindness towards us – especially in those early, scary days!
@petunia354: One comfort to me has been that hopefully D (and K) will remember none of the awful parts. At 10, I’m sure you remember a lot though – no fun! Kudos to you for giving your parents credit, I hope that’s how D sees it later in life
blogger / persimmon / 1225 posts
Your posts have been amazing to read, your family is so lovely, and you are a wonderful mother! Thanks for the candid posts.
cherry / 129 posts
I’m also a special needs mom, and I desperately needed to read this post tonight. Thank you so much for sharing.
apricot / 409 posts
You are so strong. I can’t even imagine how hard it must have been to go through all that. You’re a wonderful mother with a beautiful family.
grapefruit / 4731 posts
Thank you so much for sharing this. It really brought tears to my eyes. I think all parents just wish the very best for their kids. I think I can take on anything as long as I knew that it meant my kids would be okay.
What also touched me was how your marriage got through this and I am just so happy for you to be with someone that can stand side by side with you in this.
blogger / pomegranate / 3044 posts
@LML: I’m so glad sharing my perspective is helpful to you. If you need a mom buddy please wall me, or post in the chronic health thread. We’re all really supportive of each other! I find that it is so helpful to have moms to talk to who “get it”
@Raindrop: that’s the scary part, when you don’t know if they’re going to be ok or what “ok” will even mean! And yes, I am very lucky to have Mr T
blogger / nectarine / 2043 posts
He is the cutest! And you are amazing. Even putting one foot in front of the other can be a great feat at times – power to you all for everything you’ve had to handle.
persimmon / 1328 posts
Thanks for this! It is nice to hear about how others handle the stress of being in this situation because I do feel very clueless/helpless a lot and it is great to know it isn’t just me. Love seeing pictures of D too! I hope that one day C will be doing as well as D
blogger / pear / 1563 posts
Ok, so I haven’t taken the time to read all the parts of your story until now and I went back and read every single one and wow. Just wow. You guys have been through so much! I am in awe of your family’s strength all along the way. I’m SO glad and grateful to hear how well sweet D is doing now! I’m so grateful for your openness and love reading about your total commitment to your sweet boy and determination to be his advocate even when it wasn’t easy. I know he will turn out great because of all you have done as his parents. Can’t wait to continue to “watch” him grow up!
blogger / cherry / 204 posts
Thank you for sharing this!
grapefruit / 4997 posts
Thank you for sharing D’s story with us. I cried reading this (just like I usually do with your other entries). You all have been through so much and your words are so powerful and helpful. May your family grow stronger each day! You are totally amazing!!!