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

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: http://hp.cta.gs/groupon

You can also make a tax deductable on Help Portrait Detroit's behalf online at https://help-portrait.donortools.com/my/funds/47964-Help-Portrait-Detroit-MI-2012 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,

Najeema

Help Portrait Detroit Team Lead 

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

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

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

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.

Najeema

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 www.spinabifidaassociation.org.  To find other blogs like mine, get encouragement, find out global news about Spina Bifida, or find resources available visit facesofspinabifida.com .

Najeema