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.

http://www.sbuniversity.org/

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.

Najeema

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.

http://facesofspinabifida.com/

 

 

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