When I was little, I always dreamed of being a mother. I wanted 3 or 4 children. I wanted at least 1 of each. I got my three children, and I have 2 girls and a boy so I have exactly what I asked God for. He blessed me with my 3 sweet children. Not everyone is blessed like that, and I am grateful for my blessings.
I had not planned however for them to have the problems they have. I do not think anyone does. No one sets out praying for God to give their children problems or disabilities. Let alone all 3 of the children having problems. However, it seems God felt that John and I were up to the task and decided to bless us with 3 of his very special children (not that all children are not special, I hope you understand what I mean).
In reality, I do not see their problems as being too bad. I guess that is because of the group of friends I have due to their problems (especially in the NF and oncology communities). I know it could always be worse and I am reminded of that every time I hear of a small child going blind or deaf due to their tumors, a child losing a limb because of a bone abnormality or a tumor, and every time I hear the sad news that a child lost his or her battle with neurofibromatosis and/or cancer. I do not let myself focus on those things but at the same time I pray for the child and family and then say a prayer of thanksgiving that so far we have been lucky in that regard.
I try and think of the positive things as well.
Yes, S struggles a lot with her ADHD. However, with ADHD comes an insatiable appetite for life. She may jump from thing to thing with lightning speed, but she lives life to the fullest. That abundance of energy keeps her going and if we ever get the attention under control will serve her well in life. Yes, her brain tumor is in a very bad place and can someday take her life. (A child can also be killed in a car wreck, but do you focus on that every time you get in the car?) I instead think about making her life fun for now. I do not want her focusing on that and if I do she will.
IE has his meltdowns, true. I will probably never see him get on a stage willingly and perform (unless someone is holding him) but that is okay. He is so smart and so logical. In fact how logical he is makes me laugh all the time. However, he is the type of person who will grow up to do great things. He may not be super social..but he will make a difference in the world. It is just my responsibility to help him learn to keep his emotions in check and to know his limits so he knows when to remove himself from a situation before he goes into sensory overload.
C cannot say her name. She cannot tell me those 3 words every mom longs to hear, "I love you". However, I know she loves me. She can communicate without words. With her, every milestone she reaches is more of a miracle to me. She has been a lesson in what we all take for granted. I had never really thought about what a miracle speech is or throwing a ball. Everything with her is slow motion, so I get to revel in every remarkable thing she does. Every single word she learns to say is a miracle. Every new motor milestone is a miracle. These are things that I did not pay as much attention to before. I also do not focus on the tumors that may one day take her sight (or worse) but make sure that she too is living life to the fullest today. After all, tumors or no tumors, no one is guaranteed tomorrow.
This is not to say I do not get angry or sad. I do. There are days when I wish I could just lie in bed and cry...but then I remember the reasons I have for not doing that. My 3 special blessings and my wonderful husband (who is also a blessing).
So when you ask how I do it..there is no easy answer to that. I do not really think it is me doing it. I think it is God and Jesus carrying me through due to not only my prayers. but the prayers of countless others who are praying for us. And I thank all of you for your prayers, they work.