In the midst of being pregnant with Eliana, and her being diagnosed with Spina Bifida, we moved to a new city. My husband got a higher paying job that meet our financial obligations, but not my emotional needs. Moving to a new city definitely created more challenges. Sometimes it is very discouraging not having a support system around. People have very good intentions but the saying "out of sight, out of mind," will forever stand the test of time.
All I know is the D. Being miles a way from the city that I have called home is heartbreaking. Most of the time it's just me, the hubs, and the girls. We don't get many visitors other than our bi-weekly meeting with Eliana's state provided physical therapist or the people from the research study that we participate in. We don't really know many people in our new hometown, other than a few familes that I have met in the cry room at church, and to date I haven't met any families with children with special needs.
Up until a month ago, I really didn't have anyone to talk to. (Recently I meet other Michigan moms with children with Spina Bifida, and will be talking about that in the future.) All of my friends are becoming more like associates. People often say what they are going to do, seldom follow through. And if I hear someone say, "If you need anything don't hesitate to call," again I am going to scream, most of the time their voice mail is all I get. At this point there is no reason for dialing.
Currently my support system consist of talking to my mom on a daily basis, and every so often getting a message asking how the girls are doing from a random friend on facebook. I have over a thousand.
This post probably seems more like a rant, but the truth is it is so important to have a support system when you are going through a situation like this. For me the baby blues probably lasted a little to long, and it is cliche in the Christian community to ask for help from a psychologist, but I probably needed one. Not only was I adjusting to having a new baby, I was adjusting to a new life of having a child born with Spina Bifida. Our lives aren't over, her life has only begun, and she is surely doing far better than the wacko's who thought that I should get an abortion.
I have my days, most days, where I am left wondering what is going to happen next. The nagging question in the back of my mind, "Will She Walk?" Then she does something amazing like crawling over a toy, or pulling to stand and I realize it doesn't matter Will she in future, but what she IS doing today. To my families with children who have Spina Bifida or any other special need/disability, seek help. Don't go with questions unanswered. If your depressed don't suffer in silence. It is so important to have a support system and if you don't have one, find a support group to be apart of. Families that are going through a similar situation can truly provide great in sight. Get help and get involved, we need you.
Najeema
This is great Najeema. I completely understand where your coming from. I fortunately had a great support system when Norah was born and even though I would have done it without them, I definately didn't want to. I needed them more than they even knew and still do to this day appreciate everything they have done. My 9 year old and my 7 year old had there tonsils taken out when they were 3 and 4. I thought that was so awful and a horrible thing for a child or parent to go through. How petty huh? Now having a daughter with Spina Bifida who has had 3 shunt revisions and a spine closure I can't even believe my mind set with those tonsil surgeries. Her birth has changed my entire family's prospective on life and now I see my sitiuation as being so fortunate that it is Spina Bifida, not cancer or something worse. We are truly blessed to have these strong fighting daughters who teach us everyday to keep going and love us unconditionally. You know I am only a Facebook message away if you need to talk. Happy to have met you!
ReplyDeleteThanks for the encouragement Morgan. I didn't know you had a blog....can't wait to read more...I know its hard to find time to blog....
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