10 Lessons I’ve learned from being a Special Needs Mom

It, probably, goes without saying, but that the last year has changed me in many ways.  How I identify myself, my goals, my values and my perception have all changed and I know as we continue down the journey, I will continue to evolve.  Being just a little over a year in, this seems like the perfect time to capture what I’ve learned in the first year of being a special needs/ micro preemie mom
  • Doctors are our advisors, not our decision makers.  They have a lot of impressive credentials and talk in really big words, some of which I’ve heard a hundred times and still cannot pronounce, but most doctors we’ve met will say “no one knows a child like a parent”.  The parent-doctor partnership is critical.  Every patient is unique and, while doctoring is founded in science, practicing as a physician is an art form.  It’s really important for parents to ask questions until they understand diagnosis and procedures so they can feel comfortable with what’s happening to their child.  If you don’t agree, make them sell you on why it’s the best idea and ask what are the alternatives.  Obviously, some decisions are imminently critical and you just have to put your trust into the doctors, but in most cases, it’s okay to put on the brakes until there is an agreement.
  • Good nurses are much more important than good doctors, treat them with the respect and gratitude that they deserve.  On a good day in the hospital, you will see the doctor once.  To see a hospital doctor more than that means something is not going well.  Nurses manage the day-to-day care and comfort of a patient and the family.  They translate what the doctor just said, they bring you special treats like popsicles or warm blankets, they listen to and advocate for the patient, they wipe butts, give shots and IVs, block visitors when someone needs sleep and run around like mad women (and men) but no matter how busy they are, they always have time to give a patient or parent a hug.  No one at the hospital has a greater impact on the quality of care than the nurse and 99.9% of them are amazing,
  • Smile and make eye contact, you never know when someone will need it. While I am an extrovert, I also have deep Midwestern roots and we Midwesterners are raised to mind our own business (at least publicly).  I’m also almost always in a hurry.  These two qualities combined have resulted in me having the bad habit of walking at a rapid pace with my eyes fixed on no one.  However, a few special parents in the NICU started reaching out to me and that’s when I learned  the importance of relationships with those going through similar circumstances.  I started doing the same and have been told by the recipients how important it was to them.
  • When you have no words, a hug and shared tears speak volumes.  It seems, it is human nature to do one of two things when you don’t know what to say to someone going through a difficult situation.  We tend to pull out a cliché (like, “such a roller coaster”) that’s probably overheard by the recipient and starts to feel meaningless.  Or, the much worse offense is to say nothing at all which leaves the (non)recipient feeling really lonely.  Let’s be honest, there are moments in life when there is nothing to say to make the situation better.  Shared tears say, “I hurt with you” and a hug says, “and I am here to hold you up” so much more authentically than any words you can say.  It’s not okay to not acknowledge what the person is going through, but it is okay to acknowledge it without speaking a word.  I will never forget one mom that I didn’t know well saying “can I give you a hug”.  That hug got me through that day.
  • No matter what your situation, someone always has it better and someone always has it worse.  It’s okay to acknowledge and be sad about the bad, but never stop appreciating what’s good in your life.  Without a doubt, the last year has been the most challenging in my life.  I can’t say the cliché,”life’s good, everyone’s healthy…”, but I can say “life is good, I am loved and I love and I have hope and so many blessings”.  There is not a day in my life that I couldn’t say that statement, so yes, there have been some crappy things that I hate happening in my life.  But wallowing in the crap just means your smell bad and have a worse view.  Knowing what’s good in life is essential in swimming through that crap.
  • When someone comes over and your house is a disaster, forget the house and enjoy their company.  Before kids, most Saturdays I took five hours to clean our house.  I now snicker at that thought.  Five hours dedicated to one fulfilling task, what a luxury that I didn’t even know to appreciate. I’d still be really proud to be able to offer that to my guests, but reality today is I’ll do my best to have the kitchen cleaned and a bathroom that’s guest friendly and if they aren’t, I apologize and say, “welcome to our lived in home”.  What I’ve learned is most of them really don’t care and understand completely.  They don’t have less of a good time and so neither should I.
  • Most of the time when your toddler is kicking and screaming about what he doesn’t want to wear, he just needs a hug.  Some really tired mornings, I forget this lesson, but I must say, I can’t believe how many times Kellen has been snapped out of a temper tantrum by a hug.  He’s hurting too and can’t always find the right words.  It’s a lot like the lesson a few above, there are no words that will make Kellen feel better, but hugs are pretty magical.
  • Be open to those that reach out, you never know who will get you most right now.  I’ve been struck many times at the people who I wouldn’t have considered close friends who said the right thing or knew the right night to drop dinner by or had the best ear to listen to me talk.  A good example is one woman who I really only knew in a professional context.  I’ve always enjoyed her company and we typically checked in one or two times a year.  Since I went on bed rest, she’s been really proactive in checking in with me and visiting at the hospital or our house and every time she leaves I feel like she’s walked away with 10,000 pounds from my shoulders.  Interviewing and listening happen to be skills she uses in her consulting profession, so it’s something she’s really good at but I’d have never known that until she started reaching out to me.  She had no obligation to become my friend through this year, but she did and so did many others from walking the dog to flying Cyrus to AZ to sending presents to the boys to leaving notes on CaringBridge. So many people we didn’t know well, or at all, have lifted us up through this year.  You never know who will be there to help, but it seems someone always is.
  • What empathy feels like Empathy is an emotion that I’m not good at allowing myself to feel and it’s something I still work on.  However, now that I have felt empathy from others and seen how good it feels to feel for others, I realize just how important an emotion it is.  I can’t explain it fully, and it’s nothing you say, but to me, empathy is making someone feel like they aren’t alone during one of the most lonely times of their lives.  There is nothing more powerful – not even a hug.
  • Getting through a difficult time doesn’t take strength, it takes work.  “I don’t know how you do it” is a statement I often hear people say.  “It” in this context typically means stay sane or just have the stamina to keep going.   For both, the answer is the same – I work on it every day.  I work on healing, I work on being a good mom, I work on being a good wife, I work on accepting, I work on not settling.  Some days, I can only be a good mom, other days I can do them all, but I work on accepting that too because giving up is not a real option.  I work hard because, right now, I don’t have a choice in much, but I do have a choice in what I take away from “it”.

For anyone who has had their own time of challenge (everyone), I’d love to hear what you’ve learned in your journey.

Owen being sill, December 2011

© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster

14 thoughts on “10 Lessons I’ve learned from being a Special Needs Mom

  1. Beautifully written. I have shared this with my cousin who is the mother of an 18 year old daughter with Downs Syndrome.

    • Thank you for sharing it Linda, I am sure your cousin can relate and then tell me how must of what i think I learned will change completely in a couple years! Hello to you and M!

  2. I loved this post Tatum. It’s so true in many scenarios, not only people with children with special needs. I truly admire you! xoxo.

  3. Loved this post especially the part about being open to those that reach. I have met so many amazing people since Jackson was born. The NICU experience really bonds families, especially moms. I think I have also learned I am stronger than I ever thought I was! Having a child in the hospital really puts life into perspective.

    • You’re right, Sarah, people always say they don’t know how we do it – but when you’re in the NICU you see so many people doing it, it almost feels normal. A really crappy version of normal, but not that unique. I personally felt that we all got our strength from each other – and thank God for Betsy, right?

  4. thank you for sharing this post. for anyone going through a challenge this is amazing advice. I admire all the strength and love you give to take care of those two smiley boys, that I haven’t seen in forever! Love you sweetie. Btw that is such a Tatum face;)

    • Sarah, not many people could get away with saying that’s a “Tatum face”…! We miss you and hope Auntie Sarah will come for a visit. I’m sure Owen will be googly eyed over you too!

  5. Tatum, Thank-you for sharing your thoughts. I couldn’t have said it any better. Although Wyatt didn’t make it – I have felt everything you wrote – managing the NICU life as an extended stay family is really hard – and now you are doing it with on your own without the nurses and doctors around daily. I am so proud of you for all your hard work. You are amazing.

    • Kathy, thank you for the note. I think some of these things we learned from each other, as NICU parents. I hate the circumstance, but am happy you are in my life and that I had the honor of meeting Wyatt.

  6. Pingback: Gift Ideas for NICU Families | Ain't No Roller Coaster

  7. Great post. Agree about doctors in nicu,a few of junior surgeons we met needed taught parents sometimes know best or at least should be listened too!

    Definitely a good day if not seen doc in nicu.I remember saying that to a friend I made that it was a good sign although important to ask to speak to them if u need to. Though I felt the nurses explained things much better.

  8. Thanks for sharing this. I would say that an important thing learned is…cherish every second. Even the moments when you can’t take another breath (and they do come and go). Think ahead and know that this too shall pass because life changes in the blink of an eye and those moments are a part of this special and fascinating journey.

  9. I love what you said and wrote. I always have people saying I don’t know how you do it. The answer is I don’t think about it. My daughter is a gift to me and one I cherish deeply. I couldn’t do it without her. You are also so right when you mentioned others that you don’t always expect to come into our lives. They are almost angels in disguise. It is either with a kind word, a shoulder to lean on, an ear to listen, a smile, a hug, or a word of advice. Sometimes it is all of these things. There is so much I have learned on this journey. I could write a whole page on it myself. My daughter is fourteen and she never stops teaching me. I have learned more from her than I believe I could ever teach her. I thank God for her and that blessing everyday. I would say the one thing I have learned more than anything and it has been taught to me because of my daughter and it is that charity still exists. My favorite verses is 1 Corinthians 13 is about how charity is patient, and kind, it does not envy, boast, and slow to anger and etc. I see this in her speech therapist, her doctors, in her aides, I’ve seen it in people that has come into our lives who she has been drawn to for some reason and them to her.

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