Recently, I met an amazing lady named Michelle, whose blog I follow because she and Christian were born with the same type of cleft. Because this cleft is so rare, I treasure our relationship as one in a million...or I guess you could say 50 in 7 billion. :) She is definitely a special person just like my Christian! She has been through more in her life than most of us will ever face. She recently posted a blog entry called "Gains and Losses" where she listed all the major losses in her life, and what she had gained by them.
I absolutely fell in love with this idea. I think it is Godly, it is positively focused, and it is productive to healing and moving forward in one's life. When we suffer traumatic losses in our lives, we have two paths we can take. Changing our circumstances is usually not an option, but what we can do is let it make us stronger or let it defeat us. What Michelle has done by purposefully noting what she has gained from her losses is open a door to becoming stronger through those losses. So being that I have been through a lot in the last couple of years, and am still healing and finding my way, I was inspired to write my own Gains and Losses blog entry.
My loss: I want to start with the beginning and progress chronologically, so first, I want to address the loss of having a normal pregnancy. I didn't get to experience the excitement and joy of expecting a new baby, at least not in the normal sense. I had weekly and bi-weekly doctors appointments from 18 weeks on. I had my head filled with cautionary warnings that my "child may not live outside the womb" or "he will probably be mentally impaired." I could go on and on, but I think you get the idea. When I think back on my pregnancy as a whole, I can definitely say I did enjoy it. I loved being pregnant, and feeling Christian wiggle around. I loved my maternity pictures, and getting Christian's room ready for him, buying his little clothes and diapers. But I still mourn the loss of not having a normal pregnancy.
My gain: I treasure every single little thing about Christian so much more so than I think many other women do with their children. PLEASE don't take this as a judgement on anyone! It is not AT ALL!!! I hear many, many people say that they need a break from their kids, or their kids are driving them crazy, and so on. But I can honestly tell you that I have never wanted a "break" from Christian. Maybe that day will come eventually (haha!) but as of yet, I enjoy spending every second of every day that I get with him. When Christian was about 8 months old, a lady I knew who had a 1 year old was also pregnant and almost due. We were talking and she kept on and on about how she didn't know how she would handle having two in diapers, how it was going to be so hard, how she was dreading when the baby came. Today, this is just normal rhetoric, this is just how people talk. I don't think anyone REALLY means it, but none the less, I think there is a touch of honesty in it. I almost got upset at the fact that this lady was complaining about having two beautiful, healthy children, something I would die for. So my gain is the sense of preciousness that I have about Christian, the real knowledge of just how much of a gift he really is.
My loss: The emotional scars that still haunt me from our NICU experience. Our NICU experience was awful to say the least. I know I've touched on it before, but I'll say this: the Children's Hospital NICU treated me and Christian like pieces of crap who weren't worthy to be there. With the exception of a few amazing individuals who really cared, people were rude, hateful, disrespectful, and so unsympathetic to the fact that I was hurting that they literally left me with an emotional scar.
My gain: I have a passion to pursue better patient treatment for families with disabled members. When I complete my juris doctorate, I plan on helping families that will be where I was and be a liaison for them. It is not just something I want to do, it is a passion. This has opened doors to other areas where I will be able to help people with my degree, in social security benefits, special education laws, mental health laws, and the list goes on and on. This dream is what keeps me in law school from week to week.
My loss: Missing out on all the things Christian won't be able to do because of his vision impairment.
When we first found out that Christian was blind, I can remember closing my eyes and literally thinking to myself "This is all a dream. I'm going to wake up any second." I have had to come to terms with the fact that Christian may never see my face, that he may never know what the color blue looks like. I have had to find peace with the knowledge that Christian might have to depend on someone for the rest of his life to help him accomplish things.
My gain: I have had the unique opportunity of watching Christian astound me, and others, with all the things that he can do, and that he does well. And I have learned to change my way of thinking, to take my focus off of what Christian can't do, to what he can do. His vision impairment doesn't make him as "pitiful" as I once thought it would. He is so secure and well adjusted in who he is and how he does things that I shocks me. I also would like to add here that I gained a new faith in God, a powerful, moving, life changing faith. I will never give up hope that one day Christian will see. I don't know when or how, but my faith in God will not allow me to let go of that hope. Faith is the substance of things hoped for, the evidence of things not seen. If God never does make it happen, I accept that without any bitterness, but if my faith in that hope is what makes it happen one day, then I will keep believing until the day I die.
My loss: Watching Christian struggle with so many things that other babies do without much help. Christian is 12 months old and he still doesn't crawl. He is getting close, but he's not there yet. I am guessing that he won't walk until somewhere around the age of two, and therapists have told me to expect it as late as three. It breaks my heart to have to see him struggle. Christian didn't smile for the first time until he was two months old. I wanted so bad for Christian to smile at me, to let me know he was happy, and it broke my heart that he couldn't see someone smile to learn how to do it.
My gain: Every single little milestone that Christian reaches is cause for celebration. Just today, Christian clapped for the first time, and I shouted because of the joy that consumed me. The first time he smiled, the first time he said "mama," the first time he sat alone, or fed himself, those meant so much simply because Christian did have to struggle to do those things, yet he perservered. A second gain with this is that I get to see just how strong Christian really is. He not only amazes me when I see just what he faces and conquers, but he convinces me that he WILL be ok.
My loss: The pain of watching Christian go through surgeries. This is BY FAR the most painful thing I've experienced. I tell people that the only way I can describe the pain is that you can feel yourself breathing, but you are not sure how you're still alive. I hurt so bad that I literally thought I would fall over dead sometimes.
My gains: I treasure every day, every moment I have with Christian. It's harder for me to lose my temper with him because I realize that I'd rather have him here and misbehaving then for him to not be here at all. I have watched Christian waking up from surgery, both eyes blacked, bleeding from both eyes, his nose, and his mouth, gasping for breath, moaning in pain, and swollen to three times his normal size. Somehow, the fact that I never get to sleep in anymore, or that Christian can be super fussy when he doesn't feel good, just don't seem to matter all that much.
My loss: My relationship with Chris has suffered tremendously since Christian's birth. I won't go into gorey details, but I will say that with the national divorce rate at 50 to 60%, the divorce rate for parents with special needs children is 70 - 80%. The extra pressure and added stress wear hard on a marriage. We are not the same people we use to be, and our relationship is definitely different.
My gain: I have become more independent. I depend on myself for much more now. and I know now just how strong I am because I've had to withstand so much without that support system of a spouse standing beside me. I am confident that I am going to be ok.
As a reflection on all of this, I have to say, that I think everything happens for a reason. I know that God knew all of this would happen long before it ever did, and I believe that He has plans to prosper me and Christian and to give us hope and a future. I know that although I've suffered a lot of loss in the past few years, I have gained so much more; things that most people will never suffer, but also that most people will never gain. Of course, if I could do something to make Christian better, to wholly heal him, I would do it in a heartbeat, but if I had to do everything over again, I would do it. I choose not to be defeated.
