One of the pains of having a child with a special ability are the days when your child has to sit on the side lines and watch other kids play.  This hasn''t happened to me all to often, as Elly is only 19 months old, but when it does happen it makes me want to cry.

Elly has a cousin who is a few months younger than her, and is walking.  I know that things are going to take a bit longer because of Spina Bifida but it hurts a little. Yesterday all of the children, including Elly's older sister were playing a running game. I don't know all the dynamics and rules of the game, but it conisisted of them running in a circle thorugh the doorways of my aunts house and chasing each other, over  and over again.  (Kind of annoying at times.)  Elly of course is one of the youngest and since she is not walking had to crawl in a circle.  Having to crawl kind of put her in the way of the game, causing the other children to trip over her.  Needless to say we had to remove her from the game, which she was none to happy about.  She wanted to run and play just like the rest of the kids, but she just couldn't. It broke my heart because there really wasn't anything I could do about it.  If I let her crawl during the game, I take the risk of her getting hurt, and I definitely didn't want to have to take a trip to the hospital.

Prior to spending time with family we were at the hospital for quite a few hours. It was general check up with the urology department, a  urodynamics  study and a renal bladder ultrasound (RBUS).  It was a long day.  We  only had one meltdown, and for the most part both of the girls were patient.  We will get the results back soon, but as always I am apprehensive.  Though Elly is exceeding expectations in many areas, things could change at  any moment and I just don't know if I could take that right now.  My husbands work schedule is crazy, I'm tired and yet still trying to generate extra income to our household.  It is a lot right now, and friendships for me are very few and far between.  Though God is awesome, we were created as relational creatures and we we lack that, it causes a host  of issues.   I thank God that I am rebuilding my relationship with my mother, but there are just certain things that  you don't want to talk to your mother about.  My husband is often my shoulder to cry on, but having a female confidant would be nice.

Despite the multitude of post that speak of the challenges in our lives, I know that there is hope.  Optimism is the key to successfully parenting a child with any special ability but it is not always easy to come by, a spoon full of sugar doesn't always help the medicine go down, and you have bad days often.  You desire for your child to live limitless, but sometimes there seems to be a bridge that you just can't cross. It's got to  get better....I konw it is...

Najeema

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

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 www.sbaeducationdays.org 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.

Najeema

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