I follow the blog of a woman named Jennifer who was pregnant with spontaneous triplets….a fraternal and a pair of mono-di twins. I think I may have mentioned them before. I began following her blog after she posted something on facebook and I sent her a message because I was so moved by the feelings that came with reading her story. You see her TTTS story is so very different from mine, all of her babies survived the disease inutero but were born at 28 weeks. When I first encountered them the boys were 5.5 months old. Her fraternal and her recipient baby had been home from the hospital for months but her donor continued to struggle. At this point he had been given a tracheotomy and was breathing with the assistance of a ventilator through this. He struggled with his health and was still months away from coming home. His ‘twin’ brother was also struggling as it was apparent that he had brain damage and would likely have severe cerebral palsy. Thankfully the remaining baby seemed to be right on target in all areas.
I sent her a message to tell her how much their story moved me and how much it made me think. I was honest (though very diplomatic) in admitting that I always thought it was so hard to lose one or both of your babies to this horrible disease but reading her story made me realize that surviving it wasn’t all sunshine and roses either.
And then about 6 weeks after I began following their story devastation hit and their donor baby passed away from the complications of severe lung disease. I was amazed at the strength these parents showed, how absolutely dedicated they were to their faith, how honest they were and how much they did not let grief take over their lives.
I continue to watch their blog and was very moved by an entry she wrote last week as sleep evaded her and she dealt with the feelings about her grandfather’s very near death from cancer and how her mom is coping. She made me recall some of the feelings I had and have when people talk to me about how I cope, how strong I am and how I’ve accepted all the God has given me. And in four words… I Deal With It. In the words of Jennifer:
I dealt with it. I stood strong. I have faith in our God that he is home that he is where he is suppose to be. I have peace with this. Though my flesh yearns for his presence. My body aches to hold him. I feel like my mind is erasing him and every time I see his face in a picture the burning pain comes back. I shake it off and move on. I take care of my children. I do what I have to do. I don't drowned the pain in pills, cigarettes, massive quantities of alcohol. I'm not out getting high and I'm not sleeping my life away. I have something to live for. I have 3 children who need me. A husband who loves me and most important a God who loves me.
Things are different for us both…I do not have the daily stresses of raising a child with significant special needs but then again, I did not get to meet Cole, I did not hold his squirming body in my arms, I could not breath in his scent and I cannot picture him except to picture a mirror or Cameron. But I also did not have to watch him suffer, I did not have to run back and forth from the NICU for months and prepare mentally every few weeks that I may have to say goodbye to him. But we both deal with it and similarly we deal with it by turning to God to gain strength and writing about our sweet angels.
As Jennifer says, life sucks sometimes but it’s not a matter of bad luck or the injustices of the world. For me it’s about learning about myself and others through a long and hard journey, a rocky road to travel. When things get bad you have to turn to God and continue to praise him…it’s the only way to make any sense of it. When others say to me that they don’t know how I did it or that they wouldn’t have been able to do it…well I just shrug it off because I think “well what else could I do”. But I also think that I had so much to live for, so much good in the world and in my life that I can’t talk about the negative, the injustice, the sorrow. I can’t wonder what there is to live for because I know what there is to live for….they greet me with hugs each day and tell me how much they love me! And so I deal with it, I cope, I live with the Hope that I’ll see my son someday again. And I sing the praises of a Lord who gives us such amazing blessings, love and gifts. We are truly a blessed world!