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Raising Two Very Differently Abled Twins

I sit here as Hart and I are embarking on his second intensive therapy session away from our family.  First we went to The NAPA Center in Los Angeles for three weeks, now we are getting hyperbaric oxygen therapy in New Orleans for a month.  As a family we are all making huge sacrifices to help make Hart function typically (this comes after his PVL diagnosis, for more on how he was diagnosed and what it means click here).

My heart is so damn heavy with the time I’m spending away from my kids: Aspen is acting out and Hayes is whiney and he doesn’t know why, not to mention my stepkids – “Hi, it’s me, Meghan – your stepmom, remember me?  I didn’t leave you, I love you!” It KILLS me to spend so much time away from them – especially Hayes because I have never been able to devote the one-on-one time to him that Aspen and Hart have both gotten.  Oh!  The guilt!

But I digress, I’m here to touch on a much more delicate matter regarding my twin 15 month old boys, Hayes and Hart: As a mom, how do I internalize their abilities?  To really boil it down I feel like I have an angel and a devil on my shoulder when looking at the other child through my mom lens.  Please allow me to wordily expunge some shameful thoughts in a (likely) disorganized way.

(Throat clear before monologue commences.)

Ahem…

Hayes’s Mom’s (that’s me) Point of View:

My child is so advanced!  Have you seen him?!  Not only is he a mini tank, he carries around his baseball bat everywhere he goes.  And I think he’s going to be left-handed!  He might just follow in his dad’s footsteps and be the next Major League Baseball great!  Yep, that’s my boy.  He’s now running, walking backwards, he can eat like a haus.  Did I mention how smart he is?  He has ten words and getting chattier by the minute!  That’s ADVANCED, my friends.  He loves intently watching everyone and everything and soaks it all up like a sponge.  Oh, and the drama!  That child belongs on a stage!  He is just so well-rounded, but damn is that boy coordinated or what?!

Hart’s Mom’s (that’s still me) Point of View:

My child is so sweet!  He is incredibly social and has a megawatt smile.  He will laugh at anything and everything.  He’s so friendly and loves going to all of his appointments and meeting new people.  He’s so good with allowing a strange doctor or therapist examine him and never cries.  He’s working so hard in therapy and with each milestone he reaches he becomes so proud (and is prone to show off!).  He has three or so words (this is the same as a typical kid!!) and is working hard at each one, he can even request a banana by name: “Nana!”  He just started really using his pointer finger and has a great pincer grip.  He only choked once (on his first birthday, what a birthday to remember!) and is really chomping on his food well now.  His knees are bending more and more everyday and I think he’s SO CLOSE to standing and walking!

Notable Differences:

I really go on and on about Hart, I really get into the nitty gritty milestons that most parents of typical kids have no clue what I’m referring to (pincer grip??), almost as if I’m trying to prove “he’s really great you guys I promise.”  Nowhere do I mention anything with how Hayes eats or how he points because as “Hayes’s Mom” I expect it, so it goes without mentioning.  Notice I don’t talk about how sweet Hayes is, I lead with his physical prowess (because as a boy this is culturally important).  I make excuses for Hart while I laugh jokingly about Hayes.  And I do all of this unconsciously and with so much love for both of them.  I honestly didn’t consider the glaring differences in description until this moment.  I’m not imparting lessons, just reflection.

 

“Hayes’s Mom’s” Reaction to Hart and Hart’s Mom (removing myself from Hart):

Oh!  That poor child!  Oh, he has a brain injury, okay, I see…  I understand, but I don’t.  But I don’t need to understand and Oh!  Hayes!  Stop running over there!  My Hayes, he’s just such a “boy!” He’s so physical, boys though – right?!  Oh yeah, that Hart boy, bless his heart, oh isn’t that sweet his name is Hart too.  He’s just so cute though!  Gosh that poor mother, what a good mother she must be for getting him so much therapy.  And I can see the way she longingly looks at my Hayes wishing her son could be that way.  God, we are just so lucky.  And truly we are beyond lucky because Hayes is an exceptional specimen of a human.  He really is, he’s smart AND athletic.  When did he walk?  Oh lord I don’t know, he started running five minutes later!  I don’t need to think about these things!  Hart’s mom is in such a different world than me with all her son’s therapies and weird acronyms, meanwhile I’m busy, too – because I have this crazy boy to chase after!  So I guess we must have the “busy” part in common!  But we aren’t because, oh my, that poor child.  Hopefully that Hart boy walks soon.  I can see the way it just tears his mom up to look at Hayes but she needs to realize that Hayes is just so advanced!  My boy is a stud and can even keep up with his big sister.  Anywho, I’m grabbing coffee with the other moms – that “Hart’s Mom” lady just gives me the weird judgey eye like she’s so jealous!  I mean I would be too if I were her but I’d never say that, but c’mon she needs to try to stop being so intense, it drags everyone down!  We have nothing in common except our hectic lives but I’ll definitely pray for her because she has a lot on her plate.  That’s probably why she’s jealous, poor thing.  Oh that poor family… but such a good mom, I’ll let her judgey-ness go because I’m sure she’s going through a hard time.  Yikes, she looks tired too… and thin.  Well I’m sure she’s stressed, poor thing.  But we all have problems.  Oh Hayes, please don’t hit your sister!

“Hart’s Mom’s” reaction to watching Hayes and Hayes’s mom (removing myself from Hayes):

Ugh, another typical child, running all over the place.  Yeah I get it, Hart has a brain injury, but must every child remind me of it?  That Hayes kid keeps running up to me with his sweet innocent face and starring at Hart like “Why won’t you run with me?”  Well, Hayes, he can’t… as Hayes promptly forgets his inquiry and runs off like a gazelle (a drunk gazelle, but he possesses much more graceful running that my robot, Hart, could possibly imagine right now).   But Hart’s doing so great at therapy!  Surpassing expectations!  But then reality hits: I see how every other kid on planet earth just “does it” and the moms don’t think twice about it.  Why can’t they see that this is not normal?!  They have it so easy!  God if my kid was typical do you know how much more shit I’d get done?  And these moms act like they are sooooo busy.  My ass.  And they look at me with such pity.  Hi, I’m just like you (except with a lot less free time which you will never ever EVER EVERRRR understand because you can’t imagine possibly being busier than you are.  Bitch bye.).  God, when did I get so pessimistic!  I’m not pessimistic!  Hart is doing amazing at therapy, he’s even so much better than so many other kids bless their sweet souls.  And I am a good mom.  These moms don’t even know what I’ve sacrificed by doing research and being Hart’s advocate, and they know they couldn’t do it, either.  It takes a special person and I AM that person, damn it!  But I don’t want to be that person.  Oh Hart let me give you a kiss I’m so sorry for saying that I’d never change anything about you!  You are just so perfect the way you are and I’d do what I’m doing a million times again!  I’ll never say that I wished you were typical again!  That’s right, Hart, because these moms will NEVER ever have the bond we have.  We spend so much time together!  And you will be so much more empathetic because of your journey.  You will just be the most amazing person on the planet, way more dynamic than that Hayes kid running around like a triathlete, anyway when did being a triathlete ever even matter?  It doesn’t, Hart, what matters is what’s on the inside.  C’mon Hart, let’s go, I’m going to join another Facebook group and ask them about why your right leg swings out further than the left because I know they’ll have answers.  And hey, maybe I’ll finish a glass of wine in front of my computer while researching if we should do HBOT or intensive PT next.

 

 

Now, let’s just reflect for a moment.  I am both of the moms (literally).  I don’t actually think as linearly as those trains of thought but I can easily see how I could if I didn’t have Hayes AND Hart at the same time.  And both are raw, real, true, and there’s NOTHING wrong with either mother.  Neither mother is a bad mother.  In fact, both are exceptional mothers.

That is all.  This is food for thought, that’s it.  Thoughts?  Experiences?  (And for the small – yet loud – group of “Hart’s Moms” I also welcome commiseration.  Also handed out freely: solidarity.)

 

 

20 Comments
  1. Wow !! You brought me to tears . As for different reasons I also compared my youngest daughter to the “typical kids “ . She was born deaf and didn’t hear till she was over one . Means speech was delayed as well as some other milestones. I can really relate to a lot you’ve said . My daughter is 17 now and doing awesome but did I ever stress and worry . My life was also consumed with therapy sessions . I don’t even remember my middle child when he started to walk or talk as it was all about the youngest one . GUILT was my middle name . I want to thank you for writing your feelings as so many just hide how they truly feel . You’re a great mama and I wish you strength and much love to your family .

  2. I am not a mom…I have neither a Hart nor a Hayes. I could not get pregnant. I watch your beautiful boys every day that you post and am enamored by the wonderfulness and miraculousness (not a word) of both. Your daughter is too cute and funny for words; a hoot to watch. You are soulful and a great mom to all your children. Figuring it out is all part to the process, I guess. Your entire family, in the long run, will be better for the struggle and the blessing. I watch you and am amazed at the love and perseverance of both you and Hart, taking it one day at a time. He’s improving, he really is!!!!!!

  3. Wow and Wow! Thank you for sharing. You are an amazing mom and don’t forget it. I was your exact spot 26 years ago. The only difference we only had one child. Our daughter Emily has a mild form of CP and she has strabismus too. She has had eye surgery three time to straighten out her eyes. The first time at 14 months, then 5 years, and the last at 19. We spent all our time figuring out how to help her. We did PT, OT, and Equine Therapy. Emily finally walked on her own at three and still uses a walker to walk, more for safety. She is living out her dream in NYC. She did all the normal things kids do. She graduated from high school with honors. Went to Chapman University, studied abroad in Florence, and had a summer internship in London. Now she is working full time and going to NYU Grad School. My point is continue to do all you can do. I truly believe being a doctor is an art not a science when it comes to CP or any other brain injury. People are always going to judge you no matter what you do. But you are the mom and know what is best for him. Thank you again for sharing your journey with all of us! Best, Bonnie

  4. Meghan, you are doing the right thing with the PT and OT, my husband is living prove. He had a TBI before his 2nd bday. 16 years of therapy and surgeries was his live, but you would never know. He is one amazing 47 yr old man now. I told him about your son and he said…. He will be himself, he will be amazing and “just fine”. He is so thankful now to all of his docs and therapist and more importantly his mom for help him so many years ago. His mom was always by his side she was his rock even though she had six other children. Hart will forever be thankful ……..

  5. Dear Meghan,

    You are a wonderful mother with a very normal behavior, and emotions.

    Hart and Hayes will complement each other. Each one are, and will continue to be very special. They will both will excel in their own qualities, and specialties. They will adored and support each other for ever. They will be happy. They are very blessed to have a mommy like you, and a very loving family. They will also have the love, support, and guidance of big and beautiful sister Aspen.

    You are very blessed for having your three adorable babies.

    God is by your side Eternally.

    Love Nadia

  6. Incredibly written. Unbelievably raw. Prophetically real. And, simply amazing. Thank you so much for sharing not just what Hart is physically going through, but what you all, as a family, are going through physically and mentally. Keep being the amazing mama and voice that you are! Thank you!!

  7. I can relate so much to this post as I’ve told you previously on Instagram. We have 2 boys that are 22 months apart. My youngest has a brain injury due to lack of blood flow/food through my placenta in utero. He was taken by c-section 8 weeks early and only weighed 3 lbs. My doctor said my placenta was the smallest she had ever seen in her years as an Ob/Gyn. Talk about guilt. Did I do something wrong during my pregnancy? Did I not drink enough water? Did I not eat healthy enough or take enough vitamins? All kinds of questions and guilt for me. We were told over and over that his delays were due to his prematurity and he would eventually “catch up”. Of course, I kept comparing him to my older child who is very advanced and I continued telling our doctor (who we no longer see) that something wasn’t “right”. We finally saw a Neuro when he was about 10 months old and had an MRI. From there, it’s been lots of therapies, surgeries, specialists, etc…. And we’ll continue to fight hard for what our sweet boy needs just as you are with Hart! One thing I’ve been told over and over by nurses and others in the special needs community is that YOU are your child’s best advocate and no one will fight harder for them than you. Never let someone tell you no. Never let a doctor tell you that something won’t work. Always get 2nd or 3rd opinions. And always, go with your gut. Momma knows best most of the time! You’re doing an incredible job with Hart (and all your kids) and I hope you have a wonderful support system surrounding you! It can be lonely and scary at times, but as you said, the bond that you and Hart have is like no other. Good luck in Nola. I can’t wait to see his results. Go Hart Go!!

  8. Hi,
    I’m also a special needs mom and I totally understand your thought process. I only have my son who is differently-abled but it’s hard work. When you spoke about the extra effort it takes to be your son’s advocate and get everything they need it really hit home. I never really thought of it that black and white.
    I too have a hard time watching other kids. The littlest successes are so huge for moms and kids who are working with physical hurdles. It is hard to watch other kids move so easily and take it for granted. But that just means we will appreciate the little things more (or at least that’s what I tell myself).
    Personally, I think you’re very brave for sharing these thoughts with the world. Good for you!

  9. Take one day at a time Megan, your an awesome mom you shouldn’t feel an guilt your doing what’s best for now thanks for taking us on the journey of both boys and may all your wishes come true 💗💗💗

  10. Idk man I think you should get off your computer and out of your own head….just do what ya gotta do and stop worrying so much- A mom, plain and simple

  11. What a great post! You are an incredible mum! An highly intelligent! The «whole bunch» is lucky to have you! Stay strong, your efforts will be rewarded! (Pardon my english, not my native langue)

  12. Thank you so much for sharing your emotional post with all of us. I feel connected to you in a way that most mother’s will never understand. Your post reminds me so much of my boys. I don’t have twins, but I have a 6 year old son and a 2 year old son. Our eldest son is exactly as Hayes; he was a little bruiser when he was 15 months and is so advanced for his age. He’s excelling in the first grade and we are so extremely proud of him. We thought we would be on the same journey with our second son, Logan, but that was not the case. We had an extremely hard time conceiving and went through IVF. After going through the emotional IVF journey, never in a million years did I think that my son would be born with a genetic deletion. At 15 months, I just knew something was wrong. Everyone would tell me “No…he’s just delayed…don’t worry.” But, I just knew that something was wrong when he couldn’t walk at 17 months. We started PT and he was diagnosed with Hypermobility (low muscle tone) and we thought that was the only issue. At 19 months we took him to a developmental pediatrician and the doctor looked at him for 5 minutes and told us that we need to be very concerned; he was the doctor that told us to get genetic testing immediately. When he turned 2 years old, we found out that he has a 17q12 deletion; neither his father or I have this genetic anomaly, so it’s completely random. 17q12 deletion impacts development and language. It can also impact your kidneys and increase the possibility of diabetes.
    The past 8 months have felt like 5 years. Watching your younger son try so hard to meet these “milestones” is extremely difficult to watch at times. In one sense, I am so happy to see all of his progress especially in his therapy sessions. But, then you see other children his age and his older brother and remember what a bruiser he was at his age is and know that your younger son is so far behind is very emotional. There is such a different path we are currently navigating through, it’s so overwhelming. Getting assessment after assessment, calling and trying to find the best genetic pediatrician, making sure none of his 25 hours of therapy per week conflict with the other and making sure we don’t overlook our eldest son just because he’s excelling. At times, it is so overwhelming trying to juggle everything and I know you can understand that.
    And, the way you describe your beautiful Hart reminds me so much of our Logan. The first thing people tell me when they meet Logan is how beautiful his smile is. He’s so loving and sweet and has the most infectious laughter. We love our little boy so much and feel so blessed for him.
    Right now, Logan is 2 1/2 years old. He’s walking and trying to run. Stairs are still hard for him, but he’s pushing himself further each day. He speaks only a few words; this is what we are currently focusing on. He points a lot and says that/this when we don’t give him what he wants; it’s actually quite funny. He loves playing with his older brother and tries so hard to keep up with.
    SO…a BIG THANK YOU for sharing. Sometimes, you feel so alone in this world and even if just one person says that they are in this small boat with you, the journey feels little less scary.

  13. Meghan,

    I just saw your Insta story on why you are leaving your kids behind while you focus on Hart. As a parent of a 26 year old child with CP, you are doing what you feel is best for Hart. Each child is different. I admire what you are doing. Keep up the good work and don’t stop until you have exhausted all options for Hart. When Aspen and Hayes are older they will completely understand and may not even remember this difficult time. People just need to keep their opinions to themselves! Now go enjoy a glass of wine. You have a long week ahead of you.

    Best,
    Bonnie

    P.S. I love seeing all the adorable pictures of Hart and his attempt to walk. He will surprise you one day when you least expect it. <3

  14. You are an amazing mother. U are right about not everyone being as resourceful and hard- working as you are. You are right about being a warrior. Keep it up. Take care of your health too… don’t ignore your well-being in this long journey. Please keep posting about all the therapies, trials and successes that u have. There are many moms out here that read and relate to, and draw inspiration.

  15. Being a mom is hard. Being a twin mom is hard… squared?

    As a twin mom, I just want you to know that it’s impossible not to compare your twins. Just as any mom will compare milestones between their children, the difference is with twins now you have this absolutely irresistible immediate comparison opportunity.

    And the comparisons you are making are so understandable – you’re getting so educated about “normal” development milestones as you continue your journey with Hart.

    What I remind myself, especially in the hard moments, is that it’s only hard to be a parent when you really CARE. Let your love cup continue to overflow. Your story and your journey is most definitely God’s plan.

  16. Just wanted to commend you on working on your marriage and continue to be a wonderful mom. It’s not easy when your partner brakes your trust but family is more important. I happy for you and your family.

  17. Hi, I’m a “Harts” Mum, Harrison is similar to Hart in many ways. I think Harri is a month or so younger than Hart! We are currently going through the same stuff with Harri with lots of therapy etc. Gosh it’s hard work and I feel very alone with it all, so reading your blogs/instagram helps so much.
    I hope to get Harri to the Napa centre in Sydney soon, as we live in New Zealand.
    Love your blog – thank you for sharing ❤️

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