Grieving The "Loss" Of A Child

When I first found out I was pregnant with Leah (our first), I was thrilled. I planned our entire future. I planned on homeschooling, I planned on fun outings, I pictured all the nights of cuddling and story time and a million other fun things. The fun things that every parent pictures when they see that positive pregnancy test.
No mother ever pictures toting around medical equipment,  being beat up by your own child, sleepless nights that go far beyond any typical child, handing your child over to a stranger for surgery after surgery.  You never pictured seeing your child in agony with no way to help them,  cleaning scars, changing their clothes and seeing scar after scar on their perfect little body.  You never pictured that you would need to ask for respite care to handle your own child. You never dreamed that your breast milk wouldn't be enough to keep your child healthy,  You never dreamed that you would watch your child rip her nails out, bite herself, try to cut herself and a million other forms of self harm. 
No, there is no way any mother could see that coming. And yet, It's a reality that a lot of us have to face.
People on the outside see what we are going through and often comment on how strong we are. But, they don't see the inner turmoil. They don't see the bitter tears shed, the angry cries to God or the sleepless nights spent crying out to God begging for an answer as to "why me?" "Why my baby?"
Accepting your child's condition doesn't happen over night.  You don't just receive the diagnoses and carry on as if nothing is happening. No, that doesn't happen at all. 
Every mother must go through a time of grieving.

 No one person grieves alike. It's a personal experience. An experience only you can go through.
When I found out I had a medically fragile child I felt lost. I was no longer the mom I had pictured.  I felt like my heart had been torn to pieces. That was my baby they were talking about.  Nothing looked the same anymore. All of my future plans had to change. I had to change my perspective on what or who my child was. 
I spent many nights crying, many nights begging God to change it. I didn't want this. I knew I couldn't do it. I didn't want to do it.  I shouldn't have to. After all, I didn't ask for this life. I didn't ask to walk this road. 
I had to learn how to bury the child that I pictured. I had to bury the life I had planned on living. And I had bury every little idea about parenthood that I had ever thought.  It took me 2 years at least before I was ready to move on. Before I was ready to embrace what I did have. I didn't have anywhere to go with these feelings. I thought I had failed my daughter. I had failed my husband.  I wanted to die. I could only think one thing, "If I failed this bad before she was born, How in the world would I ever be able to handle a child and not screw that up too. "
I didn't understand any of these emotions. I thought even thinking these things made me such a bad mom. until I came across a group of moms going through the same thing I was.
I am going to give you a few ideas on how to safely grieve the loss of the child you imagined, the life you wanted and the plans you had.

#1 Do not lose yourself in your grief. I think this is probably the most important. When I began the grieving process I pushed away from everyone and everything that I ever knew.  I started drinking and smoking and becoming literally the worse person you could imagine me being. I started taking Vicodin to relieve the emotional pain I was going through.  I HATED life. I hated everyone in my life. The only one who I lived for was myself. For the longest time I wanted nothing to do with my children at all. And in the long run that showed. 
This was the wrong way to grieve. I ended up losing my children to CPS.  There are consequences to living life that way.

#2 Get Help. There is nothing wrong with seeking a counselor. Whether that be your pastor or a professional counselor. There is safety in numbers. And your counselor can help you deal with your feelings. He can help you identify your feelings and help you get through this.  You are not alone. It may take you time. But, if you go through the same feelings I did with wishing you were dead and thinking it was actually better for those around you that way. YOU need to see the counselor just to help keep you from doing that. We know its just how you feel. It's not truth. Your body and mind will lie to you. And you need someone who is able and willing to help you conquer that lie.

#3 Realize there is nothing to be ashamed of. You have every right to grieve the loss that you feel. You deserve to sift through your emotions and get your head on straight.  No matter how long it takes.

#4 Let this time draw you closer to God not farther from Him.
This is probably the hardest thing I had to learn. In a world that tells us that it is God's fault that we are going through this. It's God's fault that your child is not perfect (in the worlds eyes).  I had to learn that my child is perfect the way she is. Our definition of "perfect" is not God's definition of perfect.  We can never begin to fathom how God see's us.

#5 Let God use you through this.
I have been able to talk to so many other parents about God's goodness to us. And His strength to get through this. I have been able to lead a handful of people to Christ because of Leah's health issues.

#6 You STILL have a child. A child perfect in God's eyes. A child who needs you. A child you can comfort in your arms. A child you can see.  I think of 2 of my dear friends who don't have that. I think of how much they wish they could have their child back no matter the trials faced. Just to hold their hand one more time, to kiss them one last time, to feed them and to be able to take them to one more dr appointment.  I think of sweet Verona Bedtka who's young daughter left this earth to see her Father and be pain free just 2 short months ago. She was only 2.5 yrs old.
Verona would give anything I am sure just to hold Aby one more time. 
You and I have so much to be thankful for. No matter how hard the road gets. You still get to put your child to bed at night.
I encourage you to buy a notebook and every day write down 10 things that you are thankful for. EVERY DAY. No excuses.
Satan wants you to think that you have been defeated. But, I want to remind you that JESUS conquered death, Satan and EVERYTHING evil.  We have a reason to rejoice.
Lean on Jesus my dear friends. Please, Don't give up on Him. He is your Friend. He the "Friend that sticketh closer than a brother." He is the only one who will be there when your so called friends turn their backs on you.  He is the only Friend who is with you 100% of the time. He will hear you and give you comfort like you have never felt before.
I am reminded of the hymn written by John Newton. "How Sweet the name of Jesus sounds"

"How sweet the Name of Jesus sounds   In a believer’s ear! It soothes his sorrow, heals his wounds,   And drives away his fear,   And drives away his fear,   And drives away his fear, It soothes his sorrow, heals his wounds,   And drives away his fear.
	It makes the wounded spirit whole,   And calms the troubled breast; ’Tis manna to the hungry soul,   And to the weary rest,   And to the weary rest,   And to the weary rest, ’Tis manna to the hungry soul,   And to the weary rest.
	Dear Name! the Rock on which we build;   Our shield and hiding-place; Our never-failing treasury, filled   With boundless stores of grace,   With boundless stores of grace,   With boundless stores of grace, Our never-failing treasury, filled   With boundless stores of grace.
	Jesus, our Savior, Shepherd, Friend,   Our Prophet, Priest, and King; Our Lord, our Life, our Way, our End,   Accept the praise we bring,   Accept the praise we bring,   Accept the praise we bring, Our Lord, our Life, our Way, our End,   Accept the praise we bring.
	Weak is the effort of our heart,   And cold our warmest thought; But when we see Thee as Thou art,   We’ll praise Thee as we ought,   We’ll praise Thee as we ought,   We’ll praise Thee as we ought, But when we see Thee as Thou art,   We’ll praise Thee as we ought.
	Till then we would Thy love proclaim   With every fleeting breath; And triumph in that blessed Name   Which quells the pow’r of death,   Which quells the pow’r of death,   Which quells the pow’r of death, And triumph in that blessed Name   Which quells the pow’r of death."