Monday, December 31, 2012

Well I haven't had the opportunity to post on here as often as I would have liked. Honestly I a still sorting out life with my child with special abilities.  I have met a lot of interesting people over the past year and half, and I am still in the process of learning what our life with Spina Bifida has in store. We have definitely had a lot of ups and downs. I've shed tears of joy and pain, but I wouldn't change having Elly in our lives for the world.  I am revamping so many things right now, so stay tuned and have a happy New Year.

Najeema Iman

Friday, November 9, 2012

Well of course I haven't updated in a while and I definitely dropped the ball on posting all of last month, but there have been so many great things going on in the Michigan Spina Bifida Community.  The SBA (Spina Bifida Association) is well on its way to starting a Michigan Chapter and there is a fabulous craft show to benefit Spina Bifida Awareness tomorrow.

Here's my plug. If you are in the Michigan Area or the Monroe/Toledo border area come out and support the Holiday Boutique.  It is sure to be a great time for all. Items to fit any size budget and yummy items at the bake sale.  It is the perfect stop before heading to the Monroe Holiday Season Kick-Off and Tree Lighting.

The SBA has just announced the first Education Days Conference to be held at the DMC Children's Hospital of Michigan from 9am-4pm.  Registration is $35 and you can find out more information on how can register click the link below.

DATE: Saturday, December 8, 2013
TIME: 9:00 am – 4:00 pm
WHERE: Children’s Hospital of Michigan
HOW TO REGISTER: Online at or by this registration form.
COST: $35 for adults*
AGENDA: Download our latest agenda°

I am so excited that the Michigan SB community is on the move, so many great things in store.


Tuesday, October 9, 2012

Resource: SB University

Well of course as usual I fell off from posting everyday as I would have liked to but, I wanted to mention another resource to learning more about Spina Bifida.  The National Spina Bifida Association has a wonderful educational resource called SB University.  With a wide range of topics from Aging with Spina Bifida to Urologic and Bowel Function.  It is worth the investment and I will be enrolling as our budget allows.  To find out more click the link below.

Thursday, October 4, 2012

All Rights Reserved Najeema McMahan
The  climax of our journey started in NICU at Henry Ford Hospital.  It was the best of times, and the worst of times.  I now know the power of a good nurse.  There is one nurse in particular, who went out of her way to make our experience great.  I won't use her name, but she went above and beyond her call of duty.  She stayed when she could have left, and even came in on her off day to take Eliana to surgery.  Our precious cargo was safe and secure in her hands.  She wasn't able to be there on our last day in NICU, but she wrote us the most beautiful letter.  We haven't talked to her in quite a while, but I hope to see her at the NICU Reunion this year so she can see how much Eliana has grown.


Tuesday, October 2, 2012

Faces of Spina Bifida

This isn't going to be a long post because I simply don't have the time today. But I am committed to posting everyday this month. An excellent online resource if you want to get plugged into the Spina Bifida community is the Faces of Spina Bifida online magazine.   Be inspired. Find encouragement. See the latest in Health news.

Faces of Spina Bifida  

Monday, October 1, 2012

Lessons Learned

I figured since it is National Spina Bifida Awareness month that I would create a post about what I have learned during our short journey.  Some lessons are tough to swallow, but I;m better parent for it.

Every Journey is Different.  The only limitations are those that we put on ourselves.  I realize that there may be some things that Elly is a little behind on, but  this makes me want to push her more towards success. Understanding that not everyone with SB is in a wheelchair. Some have developmental delays, some don't. Some cath, some don't.  There are endless possibilities. Living with the "What ifs,' will lead to failure, so live in the moment.  Success comes from time, patience, understanding, and wisdom.  There will be tearful days, but I must let my joys outweigh my sorrows.

All Rights Reserved Photo by Najeema McMahan
With an uncertain path, the milestone moments mean just a little bit more.  Elly's vocabulary is expanding rapidly, especially within the last two weeks as we focus on interacting more verbally.  She is eating uncut apples without assistance, pulling herself to stand on the couch, crawling up stairs, throwing a balls, and amazing me everyday.  Today she even used a paintbrush.  Everyday I look around and there is something new. Every tiny milestone, is a mountain climbed cause' its the little things that matter most.

If I could turn back time I would have found a support group sooner.  For about the first eight months of my journey, I secluded myself from life and everyone that has ever been apart of it.  This was neither healthy for me or my family.   Don't do it, I encourage all of you parents, like myself struggling with your journey to find help and support.  Though I am hours away from family, the truth is they are only a phone call or email away.  There are people waiting for the phone to ring, a message in their inbox.  Supports out there, you just have to find it. Talk to somebody, cause holding it in does you a world of harm and will drive you crazy.

It is okay to question.  For the first year I carried a big black bulky organizer filled with every possible document related to Elly's SB case.  Since then the Big Black n' Bulky has been retired, and is serving desk duty at home.  Big Black n'Bulky was kind of a security blanket for me as a parent, but it did help me evaluate and formulate questions for Elly's specialist.  It is okay to question, that is how solutions are found.  An inquisitive parent is the key to success. Big Black n' Bulky also taught me that organization will put you at ease, and help you find better solutions.

In all of my organizing I often became overwhelmed and forgot to take time for myself.  Don't be like me, do it Relax, breath and take a moment for yourself.  I don't care if you treat yourself to a gourmet cup of Coffee (Biggby Carmel Marvel, heres looking at you,) read a book, have a snack, take a nap, get a massage, punch a pillow, whatever floats your boat. We must do something everyday to alleviate  the weight of the world.  Truth is we carry a load and we must let go from time to time.  There are better outcomes when you are not fatigued.

All of these things boil down to a simple phrase that can be used in life.

Live today. Enjoy the highs, experience the lows with somebody.  Ask a question to find the solution. Breath afterwards.

Najeema Iman

Monday, September 24, 2012

Help Portrait Detroit

I need you help. I am helping to coordinate an event called Help Portrait to benefit families of DMC Children's Hospital during the Spina Bifida Conference this December.  Help Portrait is non-profit organizations with communities both national and internationally, consisting photographers and make-up artist who donate with a simple mission-
  1. Find someone in need.
  2. Take their portrait.
  3. Print their portrait.
  4. Deliver it to them.
 It is a simple mission that can bring a smile to anyone's face.  Here's how you can help Help Portrait Detroit.

The Help-Portrait Community has a Groupon Grassroots campaign running until Wed. to raise money for our local events. The deal is $10 for a $20 donation, which provides 2 families the opportunity for a portrait session, three professional prints and a frame.

I’ve seen firsthand how Help-Portrait changes lives. I love volunteering and being part of our local event, and I’m excited to see how many more people we can reach this year.

Help us by donating today:

You can also make a tax deductable on Help Portrait Detroit's behalf online at or by mail to
PO Box 680656
Franklin, TN , 37068
United States
If you are interested in volunteering you time or making an in-kind donation you can contact me directly by email at najeemat@gmail. 
Thank you in advance for you support,
Help Portrait Detroit Team Lead 

Saturday, September 8, 2012

So I decided to start reading "Children with Spina Bifida: A parents guide," which I initially received after I found out that Elly had Spina Bifida, while I was still pregnant.  Part of me wanted to read it so that I can find out more of what could possibly be in store, the other part of me, that took over, didn't want to read it because I did not want to be in panic mode my entire pregnancy. 

Overall it is a good read so far, I definitely understand the perspective of the author, as I am still working through a plethora of different emotions.  Some times I'm mad, sometimes I'm sad, some days confused, other days I'm confident, from day to day like the author says we have "peaks and valleys." There are days when I sit back and look at my little warrior in awe of all the things that she has overcome and is accomplishing daily; Then there are those days where I feel like pulling my hair out.  Sometimes I spend hours scheduling appointments and trying to figure out what the next step is that we need to take.  Don't get me wrong, our life with SB is not all bad, I have meet very intriguing people, but there is always alot of things on my to-do list.

I haven't decided if I am going to keep reading the book.  While it is a helpful tool, I do not want to fall into the trap of worrying about things that Elly is not dealing with right now. 

We have a ton of  appointments this upcoming month so I am not sure when I will have time to update.

Thank you for stopping by.

Najeema Iman

Tuesday, September 4, 2012

I'm up late tonight because I can't sleep.  I try not to wear my emotions on my shoulder, but it is really hard.

I have been so consumed with Elly walking, that I have not been paying attention to any of her other milestones. My life is crazy. I'm a stay-at-home mom most days are filled with alphabets, numbers, shapes, dishes, diapers, and a shower every now and then. I'm so busy that it is easy to let things slip through the cracks without noticing.  Lately I have been deligently teaching  my oldest how to count, ride a bike, and discover the world in general, that I wonder if I have neglected to notice that Elly's vocabulary isn't expanding rapidly.  In general I am not the type of mom that keeps a log of milestone moments, even though I probably should. I try to make sure that both of my children are properly stimulated throughout the day incorporating both structured and free play, but maybe I'm just not doing enough.

I am a concerned parent, but sometimes I can become a little paranoid.  I guess it comes with the territory.  I wonder....

Should I have read the book they gave me at the genetics lab while I was still pregnant?
Should I have reached out to the Spina Bifida Association sooner?
Should I ask more questions? Should I have asked more questions in the past?
Should I seek a second opinion?
Am I stimulating her enough? Have I bought the right toys?
Should I plug myself into the Spina Bifida community more?

I don't know what I could have done to prepare me for the journey that my family is on right now. I know we don't have worst of it and  I try not think about the should've, could've, would've, but it is so hard.  I want to be hands on with my daughter development but I don't want to coddle her to much.  Distinguishing when to be call the doctor and when to become the doctor is hard.

The whole reason that I am up tonight is because my husband brought to my attention that Elly really isn't talking much.  She says 'Da-da' and a version of the word Up, but that's pretty much it. She definitely isn't quiet by nature, especially when it comes to fighting with hersister, but the words aren't just flowing like I would like to see them.  I know she understands when I say 'No' or 'Stop,' and she is obedient most of the time, but something just doesn't seem right. 

Is it my fault, am I not reading to her enough?
Am I not encouraging her to communicate to me what she needs, rather than assuming and doing?

So many questions once again, will they ever stop or will I always be questioning.   When should I be worried?  I mean she is only 15 months, but it seems like she should be doing much more than she is doing right now.

Najeema, Confused Mom

Monday, August 27, 2012

I don't get to post on here often, mostly because our life can be a little chaotic at times.  Elly is growing in so many ways.  Still not walking yet, but we are hopefully. Last Friday she was measured for her second set of SMO Splints by SureStep.  It was kind of bittersweet, while I want Elly to have everything she needs to assist her in the beginning stages of walking I was also hoping that this would be the last device we needed for a while.  But it is my vow to everything that I can as a parent to help Elly grow and develop to best of her ability. 

The past month we have also had a few bowel problems, and Miralax was not working as it used to. After a brief evaluation at the Myelo Clinic a few weeks ago Elly was prescribed mini Enemeez.  We insert them anally once daily to soften her bowels.  It works pretty well, but I am concerned that she is going to become dependent on it, doing more harm than good.   I would really like to find an alternative natural remedy for her bowel problems, but have yet to find on.  I know that proper, well balanced diet is crucial to digestion, but there has to be something else I can do to help her move along.

After meeting with her Early On Physical Therapist today we were given an assignment.  Over the next few weeks we will be working on improving Elly's fine motor skills by incoorporating more structured play time using a Magna Doodle, puzzles, and shape sorters.  We will also encourage Eliana to gain more balance, by letting her hold onto a hulu hoop on one side while we hold the other.   We continue to encourage Elly to climb when at the park and put weight on her legs as much as possible. Honestly our house is beginning to look like an obstacle course, but it is all for the greater good.  In a couple of weeks we have an appointment to be evaluated by a Pediatric Physical Therapist and may have intensive therapy once a week if needed.

Overall I feel a lot more optimistic about the obstacles we face.  The only limitations to Elly's  success come from not doing anything at all.  

It is all For the Love of Elly, who stole my heart the day she was born.

Najeema Iman

Thursday, August 9, 2012

We have come a long way in a year, but we still have miles to go.  Our current struggle comes from Elly's in frequent bowel movements.  Truth is they have always been irregular, but lately it seems like the Miralax that she takes  on a daily basis isn't cutting it and she has horrible rash that just isn't going away. 

I bit the bullet and called the "Bowel and Bladder department" at our local Children's hospital along with our Myelo Clinic and Urology.  To be honest the last couple of days I have kind of been in a little bit of panic mode, okay well not panic mode, but I really want to find out what the problem is.  I fear the catheter.  I know that it is a medical device that helps SB kiddos, but I just don't want have to deal with it.  Sometimes I fear the unknown, and expressing this seems like I am the worst parent in the world, but I want like any other parent  to know that my kiddo is going to be okay.  She's not sleeping great at night and add teething into the mix and you have a whole list of other problems. 

Other than the bowel problem, her legs seem to be a little stiff and one foot still turns out when she tries to take steps, sometimes even when she has her splints on.  We are thinking that she may need more intensive therapy to help her gain better control over the use of her hips. 

Elly is definitely not the most challenging Spina Bifida case, but it is sometimes difficult for me to deal with it, when my oldest daughter didn't have the challenges that Elly faces. She reached her milestones well before she was suppose too.  I know that every child is different, and develops different but this is still hard  for me.  I know that everything is going to be okay, and that everything happens for a reason.  The only way to look towards tommorrow is to be hopeful.


Friday, July 13, 2012

Tuesday was Myelomeningocele Clinic day, which means that we see a whole lot of doctors while sitting in the same room for a few hours, and have several test to make sure that everything is alright.  Needless to say I am always apprehensive when we go to these appointments.  Though I know that her diagnosis won't change, there is always the chance that something in our lives could drastically change.  We may one day find that she needs a catheter, shunt revision, could suffer from tethered cord, or seizures.  There is so much that could happen, but I am going to focus on the good that is happening right now.

Our appointment yesterday went great. To date Elly has not had any shunt revision, he incision looks great, and has not suffered any developmental delays.  Though she is not able to walk yet, the Doctors anf physical therapist are optimistic that she will in the near future.   Yes, there's still the chance that she won't but I am choosing to look at this as a glass half full sort of situation.

Elly has SureStep SMO's (Supra Malleolar Orthosis) which helps to stabilize her ankles.  She has had them for about three months now, and along with her wide shoes that I picked  up from Payless they seem to give her the stability she needs.  After meeting with the physical therapist at DMC Children's Hospital, we decided that several times throughout the day Elly will cruise throughout the house without them so that she can start to gain more balance.  Which works out great for both of us since she takes  them of and makes it hard for mommy to find them.  They will probably have to be refitted in a few months, but seeing as the size of her feet have not really changed much, they are okay for now.

We love our clinic, heck we travel and extra hour and a half to get to our clinic, because over time you build relationships with the doctor's and nurse's that you see every couple of months.  Now that Elly is older I know that we may only see them once or twice a year, but the extra traveling is worth it.  One day we may have to use another clinic but we will definitely be staying there as long as possible. 

Note: If you want to know more about Spina Bifida please visit  To find other blogs like mine, get encouragement, find out global news about Spina Bifida, or find resources available visit .


Friday, June 8, 2012

We made it through the first year

Copyright Justin McMahan 2012

Well one year ago today, Eliana Joy McMahan came into the world.    It has been a long year and its been just our immediate family going through most of this journey.  A lot of friendships/relationships that we have had in the past have kind of fallen to the side.  To be honest I don't blame anyone because until you are put into a situation like this it is hard to understand the challenges that come. There have been a lot of what-ifs, along with triumphs.  Eliana doesn't walk on her own yet, but she is progressing well.  We had our hopes up that she would  start walking by her first birthday, but every child with SB is different.

I love my Elly but to be honest, I have been so consumed with what was going on the past year that I have often neglected to take care of myself.  Now that we have made it through the first year, which I believe is the hardest, I feel like I can be more at ease.  Of course there is always that nagging feeling in the back of my mind that something can go wrong, things can change.  But I praise God that we haven't had to have any shunt revisions in the past year or any other surgeries for that matter. She is able to pull herself  up with the help of a stationary object (i.e. a couch, chair, or large toy), and so far we haven't experienced any developmental delays, which is another reason to thank God. We continue to participate in a research study with the University of Michigan  and I do believe that it has been beneficial to Eliana's motor skill development. 

It's been a long road. Quite a few trips to the emergancy, lots of appointments, and tons of at home visits but we made it. I know that our journey living with Spina Bifida, will have it's ups and downs but it is important for me as a mother to realize that her life isn't over.  There is nothing that she can not do.  The saying "Disability doesn't mean inability," stays with me everyday.  Elly may not have as many challenges as some with Spina Bifida, but it has definitely changed  our lives.

One thing that I have to say for parents who have a child with Spina Bifida or any other Birth defect or special ability, do not suffer in silence, get some help.  That is a saying that can apply to many situations everyday life, but it is important to talk to someone.  I said it before and I will say it again, you need a support system.  Family is okay, but when you speak with someone who has been in your shoes, or is in a similar situation it can lessen the burden.  You are not in their alone, so get connected.  

I know a lot of the words in this post are redundant but I am just so thankful that we have made it through this year.


Friday, May 11, 2012

Updates coming soon

So much going on in our lives as usual.  Sorry that it has been a while since I updated.  Between physical therapy, starting my etsy store, trying to enroll in the local community college, scholarship hunting, it has been a lot.  Thank you for your patients but feel free to drop by my personal blog at and find out whats new.

Peace and Love,


Thursday, April 26, 2012

Elly's Born Day

Not everything that I write on here is going to be pretty, but it will be truthful. 

"I went through the labor pains but I didn't go through the pushing.....I just woke up and my belly was flatter and I was told she was healthy and in the NICU."

That was one of the first things I wrote after going through a C-Section with Elly.  It was only the beginning of the deepest depression that I have ever felt in my life.  For quite a while I was very disconnected from my newborn.  This time around was different, if you didn't know Elly has an older sister.  I guess its something through the pushing process, and feeling something so great come out of you, a tiny human that grew inside you for nine months and you alone bring them into the world.

A C-Section was the last possible option that we wanted.  I went into the hospital for my scheduled induction and it didn't necessarily go as planned. It took far to long for me to dilate and after hours of  holding on to my goal of another natural birth, it was taken away in an instant.  Ellys' heart rate was unstable, every-time I had contraction it decreased significantly.  We tried everything to change this.  I knelt face forward against the hospital bed, rotated side to side, they even gave me something to relieve the pressure.  Nothing worked.  Ellys' heart rate dropped suddenly, doctors and nurses flooded my room. I was scared, I know my composed husband had to be scared.  I only had a few moments to say a quick prayer with my spiritual mother over the phone, then I was wheeled away swiftly.  I could only do what I was trained to do all my life, call on the name of Jesus.  "Lord protect me. Lord touch the hands of the doctors" is the last thing I can remember before things got groggy and I was knocked out.  I could still here what was going on around me a little bit, but I was completely incapacitated. 

There was this date, I can't remember her name, but she held my hand through the entire operation.  She squeezed it at just the right moments to let me know that everything was going to be alright.  I believe that God sends just the right people at just the right time and knows exactly what you need in the moment.

My faith has carried me through these hard months, it is the only thing that brought me out of the depth of depression.  I have my moments from time to time where I doubt all that God has done for us, but then I am reminded of the blessing that I  have been given in the form of Elly, our Joy. 


Monday, April 2, 2012

Southern Michigan Spina Bifida Connection

One of the greatest joys of my life right now is to be apart of a grassroots organization called The Southern Michigan Spina Bifida Connection. Basically we are a Michigan based group,  hoping to create awareness and prevention of Spina Bifida in our great lakes state. In the future we also hope to provide financial and emotional support for families affected by Spina Bifida.

On Saturday I had the opportunity to attend a my first official meeting. There were about 17 of us. Some medical staff who work with our kiddos everyday, new parents trying to overcome challenges of day to day life, experienced parents acting in an advisory capacity, and adults with Spina Bifida.  It was so encouraging to know that I am not alone in this, and that we are not the only family with questions.  You go through a lot having a child with Spina Bifida, and sometimes there is uncertainty.  The best way to have peace of mind is to live one day at a time, without thinking about tomorrow.  Elly is one of the greatest blessing in my life.  I have grown so much as a woman since she was born.  I believe I know about my vulnerabilities after having her. 

On another note, Southern Michigan Spina Bifida Connection is in the process of planning several different fundraisers right now, but our main event is Rock, Roll, and Bowl which is June 15, 2012 at Drakeshire Lanes in Farmington Hills, MI.  This event is a fundraiser to benefit the National Spina Bifida Association apart of their 100 Nights of Parties.  It will be an event filled with food, fun, and live entertainment.  For ticketing information visit  We are still looking for corporate, business, and personal sponsors so if you are interested email Morgan at or email me directly at

To find out more about SMSBC visit our facebook page at


Tuesday, March 27, 2012

Importance of a Support System

In the midst of being pregnant with Eliana, and her being diagnosed with Spina Bifida, we moved to a new city.  My husband got a higher paying job that meet our financial obligations, but not my emotional needs.  Moving to a new city definitely created more challenges.  Sometimes it is very discouraging not having a support system around.  People have very good intentions but the saying "out of sight, out of mind," will forever stand the test of time.

All I know is the D. Being miles a way from the city that I have called home is heartbreaking.  Most of the time it's just me, the hubs, and the girls.  We don't get many visitors other than our bi-weekly meeting with Eliana's state provided physical therapist or the people from the research study that we participate in.  We don't really know many people in our new hometown, other than a few familes that I have met in the cry room at church, and  to date I haven't met any families with children with special needs. 

Up until a month ago, I really didn't have anyone to talk to. (Recently I meet other Michigan moms with children with Spina Bifida, and will be talking about that in the future.)  All of my friends are becoming more like associates. People often say what they are going to do, seldom follow through.  And if I hear someone say, "If you need anything don't hesitate to call," again I am going to scream, most of the time their voice mail is all I get. At this point there is no reason for dialing.

Currently my support system consist of talking to my mom on a daily basis, and every so often getting a message asking how the girls are doing from a random friend on facebook. I have over a thousand.

This post probably seems more like a rant, but the truth is it is so important to have a support system when you are going through a situation like this.  For me the baby blues probably lasted a little to long, and it is cliche in the Christian community to ask for help from a psychologist, but I probably needed one.  Not only was I adjusting to having a new baby, I was adjusting to a new life of having a child born with Spina Bifida.  Our lives aren't over, her life has only begun, and she is surely doing far better than the wacko's who thought that I should get an abortion.

I have my days, most days, where I am left wondering what is going to happen next. The nagging question in the back of my mind, "Will She Walk?"  Then she does something amazing like crawling over a toy, or pulling to stand and I realize it doesn't matter Will she in future, but what she IS doing today.  To my families with children who have Spina Bifida or any other special need/disability, seek help.  Don't go with questions unanswered. If your depressed don't suffer in silence.  It is so important to have a support system and if you don't have one, find a support group to be apart of.  Families that are going through a similar situation can truly provide great in sight. Get help and get involved, we need you.


Monday, March 12, 2012

Family Stories

We are not the only family affected by Spina Bifida.  There a ton's of encouraging stories out there, of families who have overcome many hurdles.  I have the honor of being apart of a grassroots Michigan group called, The Southern Michigan Spina Bifida Connection. Today one of the family's journey shared an article that highlighted there families journey.

Check this article out

I know we are not the only one's out there. What's your story??


To find out more about Spina Bifida, resources available, and how you can help the cause visit

Thursday, March 8, 2012

"The Diagnosis"

"The Diagnosis" from I AM Curly Locks Blog

After a late night visit to the emergency in December, while pregnant with my daughter Eliana, they told me that something was different about my pregnancy.  When doctor's say stuff like that, it puts you on edge.  I was completely frantic, and when I went to a follow up appointment two weeks later and heard "the news," I was a complete mess.  The tears were flowin', emotions roarin', and  I didn't really understand what was going on.  They referred me to the genetics department, which didn't make the situation sound any better.

My meeting with genetics went a little something like this.  Heartbeat, heartbeat, thump-thump, thump-thump, heartdrop, tears, tears, and tears as I was told that my daughter would have clubbed feet and, wait  for it, Spina Bifida.   When this diagnosis came, it seemed like a death sentence as they told me the options, "You are early enough in your pregnancy, if you don't want to continue on with it. Termination is  an option as this will be hard on your fairly new marriage and your one year old..."

I couldn't believe the words I was hearing.  My mind raced, an unspoken dialogue of heartbreak taking over my mind.  I was put into one of the most challenging experiences in my life, and you want to talk about "The Option," which was no option for me.

Note: This is just the beginning official blog launch April-May. In the mean time feel free to check out my personal blog at

Sunday, March 4, 2012

For the Love of Elly:Our Journey Living with Spina Bifida

For the Love of Elly is currently under construction.  Will be officially launched in April.  Sorry for the inconvenience.  Would love for you to check out my personal blog at