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