Thursday, October 25, 2012

How Are We Doing?

I figured I had better update everyone on how we are doing.  I will repeat what I said on Facebook.  We are completely humbled at the outpouring of prayers and encouragement we have received.  I have no idea how we would be functioning without all of you who have lifted us up in prayer this week.  On Monday I spent the day wanting Tuesday to come.  On Tuesday I didn't feel any better.  It was a constant roller coaster of emotions.  I felt fear for the future, doubt in my abilities to parent a child with special needs, anger that other families were coming home with "healthy" children, peace that God was near, and comfort knowing that God has "got this".  We heard so many amazing stories from many of you of how God worked miracles in the lives of your friends and loved ones.  We cling to the hope that God will perform a miracle in Kahsay's brain also, however we are trying to keep ourselves grounded in the reality that maybe that is not Kahsay's story.  My dad reminded me that God has already performed a miracle in Kahsay's life.  If he would have stayed in Ethiopia his quality of life would look very different.

At this point we are taking it moment by moment.  Not focusing on the fears of the future is difficult.  Questions like:  How would life change if he has to be in a wheelchair?  Will he need a feeding tube someday?  Will we be taking him to therapy for the rest of his life?  Will he experience the joy of running and playing outside? Will he understand the love his biological parents had for him?  Will we ever hear him say, "I love you"?  and so on and so on...... On the day we found out about his diagnosis the words I read in the devotional book Jesus Calling spoke strongly to me.

"No matter what your circumstances may be, you can find joy in My presence.  Some days are overcast and gloomy; you feel the strain of the journey, which seems endless.  Begin by remembering that I have created this day; it is not a chance occurrence.  Recall  that I am present with you whether you sense My Presence or not.  Rejoice in the fact that I understand you perfectly, and I know exactly what you are experiencing. "

I know God is saddened by this.  I know He weeps with me when I physically can't hold it together.  I know He hates to see His children suffer.  I also know He loves Kahsay and will never let him go.  I can only stay positive because we serve a God that has given me a "crazy peace" ( a term another mom of a special needs child used).  It is a peace I cannot explain.  It is a peace that only comes from Him.

We have an appointment with the Neuro Child Development Center at DeVos Children's Hospital on November 16.  We look forward to meeting with them to hear their advice on our next steps.

Thank you for your prayers and encouragement.

Monday, October 22, 2012

MRI Results (Our Plans vs. God's Plans)

Today Jason met with our pediatrician to go over the MRI Kahsay had last Tuesday.  We had heard last week a vague explanation of the results.  We knew they were not good, but were left with many uncertainties and questions.  I decided to stay home with Kahsay so he could take a nap before his physical therapy appointment.  I knew it wasn't good when Jason came home unable to control the tears.  Immediately my heart started to pound and I knew the meeting was not good.

He began by asking the Dr. if he could see the MRI as they went over it. The pediatrician explained to Jason that there was nothing to see, because there was nothing there.  Here is what we were told:

Kahsay suffered a massive intrauterine stroke.  It severely damaged his 3 posterior lobes of his brain.  The frontal lobes have not been effected, and his brain stem is healthy.  The 3 parts that have been damaged are completely gone.  They will not function.  Because they are not there, Kahsay's head will also not grow in those areas.  He also explained to us that he has severe cerebral palsy. With this information our Dr. said Kahsay will have severe developmental delays.  He may never walk, talk, feed himself, or learn as you normally would.  He will sustain life because his brain stem was not effected.  His vision is impaired but to what extent we are unsure.  So much of this only time will tell.

We meet with our neuro-child development center in the next 3-4 weeks.  They will be able to walk us through the best path to take with Kahsay.  They will prepare us for what struggles lie ahead, and provide us with the best resources to help Kahsay.

At this point we are grieving the loss of the hopes and dreams we originally had for Kahsay.  We are angry that our son will not experience life the way we thought he would.  We are fearful of what lies ahead for our family.  We are thankful Kahsay is with us and able receive the best care possible.  We are hopeful, because we serve a God who is strong and mighty.

Kahsay is a gift from God.  He is our son.  We love him deeply.  He has changed our lives in ways we never thought possible.  The diagnosis the Dr. gave us today does not seem to match the laughing, kicking child I see in my living room as we speak.  It does not match the child who giggles when played with.  It does not match the child who can't wait to join us at the dinner table when we sing.  I am thankful for answers and a diagnosis, but I have no problem shoving that diagnosis in the garbage and trusting God's plans.  His plans may not include complete or any healing, but they will be exactly as He desired.