It has been a full day at the Emergency Room at the Children’s Hospital.  I do not understand why things happen the way that they do but there is a reason of some sort for it.  I am looking for answers.  I want to know why my child is hurting and no one can fix this problem.

We have been thrown from Neurosurgery to see if there is a problem with his tubing connected from his brain to abdomen along with an MRI to be more specific with what consists of a full body scan called a shunt Series.  We have had every kind of blood work that can possibly be taken. The results for that were his sugar and white blood count was low so he got some medicine through IV to help with that issue.  We were thrown into the hands of our Gastrointestinal (GI) surgeon.  They commented that it was not their problem. If you were to ask me? I think it would be along with Urology (which we never got to hear their opinon on the ordeal). Going septic is NOT an option.  Apparently there is only one nutritionist in that entire hospital and she is out for the week.  Again, that makes NO sense at all. So my child and his current problems are in my own hands trying to figure out a way to solve this. I have been in this situation before but sometimes a mom just needs a break from the daily struggles of being  in the not-knowing stage of what to do (especially when your a special needs mom) and let the Doctor’s do their job they are suppose to do. I’m sure they thought they did all they can do but, the problem is not solved.  We are taking another detour and hopefully and prayerfully we will find the answers we need. I am thankful that the MRI and shunt series came back good.  That means no brain surgery. YAY!

It is hard having a non-verbal child.  You are constantly trying to figure out are they hurting somewhere? If so, where are hurting?  Which Doctor do I carry him to?  He currently has 7 doctors to choose from with the problems that he faces each day.  Some days we just pick one and hope that they can help what needs to be fixed.

I say all of this because I am a frustrated mom right now and I’m not sure the direction we will be taking. Praying is all I can do to find the answer of what step is next and I will do just that.  Sometimes, I guess I just feel at a loss because we strive and thrive the best we know how and feeling helpless is not a great feeling to have.

We got home last night around 9:30 pm.  We were exhausted and this morning, I feel like I have a hangover from the event that took place yesterday.  But, as we were on our way home, the sun was setting and it was stormy on and off in certain spots coming back.

I got several pictures that are just absolutely beautiful and I feel that God reminds me that it’s going to be ok.  You don’t see it right now but MY Will not yours.

Beautiful sunset after the storm

Through friends calling and texting, and the encouragement they gave me, I began to find some strength and hope in finding the answers to the current problem we are facing with Brent (even though being physically and mentally exhausted).

Brently is a fighter. I say this all the time because he really is. He is my #L1Strong Hero!

Life is still worth fighting for even when you can’t find the solutions to your problems.  God’s hand is still at work when you can’t see the finish line. When I have no other words to say, my answer is to trust, believe, and have faith. When I don’t know how to pray,  just saying “Jesus” gives me hope and assurance.

Striving-2-thriving!  Continuing to do this L1 syndrome, special needs, disabled kind of life is always challenging. Some days it’s hard not to notice the disability because Brent is solely dependent on his dad and I. His grandparents as well.  The word “able” in disabled and “ability” in disability, are words of wisdom to me.  Even though those words are hurtful from time to time, It proves that we may be down for a while BUT, by being able to stand and face the trial and having the ability to do so is all that God is asking us to do for Him. There is a blessing in disguise What a great message to hang on to!