By Sandra M. Peters
Although Emily had only been home for a short while, things were definitely much different than they had been with our son. When we first embarked on having a second child, I was in the mindset of "been there, done that" and truly believed that things would be so much easier since we were now experienced parents. This, coupled with the many times I had been told that Emily would be behind but would catch-up in a short while, caused me to bury my feelings and sense that something was off.
It was all that crying! The nearly projectile vomiting bothered me also but since she did pass gas an awful lot, I accepted the 3-burp-cloth feeding routine figuring that she would later be able to release her gas orally without vomiting. The crying, the crying, the crying. There wasn't any pattern, there wasn't any reason. But there must be, I thought, as I was beginning to feel "incapable" of being mother to the baby I stood on the sidelines for so long just waiting so desperately to mother! That's when I began to notice that the fitful crying jags began with a severe startle. A noise, just certain sounds, bright light, her formula just a touch warmer or cooler than usual. But does that make any sense? I had never heard of such a thing, but then again, all I had ever been exposed to was the "normal" birth experience, the "normal" baby.
It was June when Emily quit going to Dad. When Dad would take her she would go into one of her crying fits. This deeply bothered both of us for many months. Dad just seemed to let it be that way while I worried profusely about the father-daughter bond -- "Will they ever have a relationship?" Many, many tears I shed over this and more and more it just seemed as though Dad didn't want anything to do with her because she didn't want anything to do with him. Much later, after a confrontation, I learned that it simply broke Dad's heart that his daughter rejected him -- him, the only parent she had for her first three days of life because Mom was unconscious. I learned that Dad sat by her bedside in tears most of her first three days, when he wasn't at my bedside. I learned that it hurt him so much the only way he could deal with it was to tune it out and wait for her to be ready for him. But at this point in the story, I was trying to figure out "why" she suddenly rejected Dad. I began to suspect his voice because of what I had observed to other noises and sounds. So we conducted an experiment. I sat with Emily beside Dad and she was fine. I sat Emily on Dad's lap, she was fine. Dad whispered, Emily was fine. Dad spoke in his regular voice -- she flipped! So I started reasoning that the time that Emily began "rejecting" Dad was perhaps when she began "tuning in" to her environment and was oversensitive to noise as a result of her prematurity. This could be the reason why she suddenly rejected Dad being that his voice was so much deeper and louder than Mom's. I don't think we will ever really know but I do still think that this is what happened.
I continued to unconsciously wonder about why Emily was still not doing much of anything and repeatedly heard "she will be behind but will catch up" in my mind from all the times that was told to me. I dismissed all thoughts on this and basically didn't deal with it at all trusting that everything would work out as I had been told in the NICU.
By this time, I had assumed all of Emily's care and was feeling extremely alone and simply coping, waiting. Waiting for what? I guess I was waiting for it all to work out, still waiting for the day to miraculously come when I would have the "normal" baby that we all expect to have, just as I had previously thought, unconsciously, that discharge day meant the day that our lives would suddenly resume to the state of "normal" expected with an addition to the family. Adjustments are expected, but normal new-baby adjustments. I found myself consumed with my garden and yard work and often expressed in conversation how far behind I was in these chores. I later realized that the reason I consumed myself in my garden and yard work any chance I could get was not only as an escape from Emily's demands and crying, not only as an attempt for some normalcy, but as an attempt to gain control over SOMETHING in my life.
Emily had now almost stopped vomiting after every feeding and this was soon to disappear forever. I'm glad I didn't fuss too much over that since she did outgrow it. Although I was still finding myself literally pulling at my hair when Emily would go into those crying fits, and I still felt horrible about my inability to soothe her and even to "deal with it", I did find that I was able to just let her cry and spend 5 or 10 minutes to myself escaping from it all -- usually in my garden! And I learned that when I did leave her in the safety of her crib while I escaped from my volcano of erupting emotions during these fits, Emily was fine upon my return -- still in a crying fit, but okay, and I was in a much better state to at least TRY to comfort her. Was it the right thing to do? Well part of me still cringes as I tell you about that period of our lives, but, yes, it was the right thing to do for ME. I had to, I felt so out of control, so helpless, and these moments really made me feel like a failure as a mother yet I truly KNEW I was a good mother and I had a wonderful 2 year old that reminded me of that daily -- THANK GOODNESS!!!
THE DIAGNOSIS
Emily's doctor had been our family physician for years and my children are the fourth generation on my side of the family who received care from this doctor. Emily had a well-baby checkup in October of 1995 and after a brief introduction to which I can't remember -- something about his style of practice, his beliefs, and our openness of communication --he said, -- and this part I will not only remember for the rest of my life but I can still actually HEAR it in my head as I did THAT MOMENT -- "...I think we need to have Emily evaluated for mild CEREBRAL PALSY". My jaw dropped, face felt immediately on fire, eyes filled with tears, my body began to shake all over -- all as I was clinging more and more tightly to my precious tiny girl. My mind knew I had heard those words a hundred times before, but what in the world do they mean -- now! -- used in relation to MY CHILD? I gasped for words as much as I did air. I don't remember what I said to the doctor but I know I quickly explained that what he was seeing was simply a mother's emotions and to "never mind that right now, What is Cerebral Palsy? What do we do?" and about six other questions. The doctor extended his hand and rested it firmly and comfortingly on mine. He proceeded to tell me that he would place the referral call to Early Intervention. Then he told me who the Physical Therapist was that would most likely be evaluating Emily and assumingly asked if I did know her. After referring to her by maiden name, it was confirmed that I did know her family although I did not know her personally. He told me she lived only 2 miles up the road from my house -- a short jaunt in the country -- which meant we were neighbors.
Later that afternoon, I told my husband what had gone on. He accepted what I had to say and quietly went out to cut some wood. That is just my husband's way. I know now that it is not that he isn't sensitive to my feelings and I have never once TRULY thought that he didn't care. This is just how my husband HAS to deal with such emotionally charged events. I called the Physical Therapist, my neighbor, introduced myself and told her what the doctor had said and explained that I desperately needed to know SOMETHING, ANYTHING about cerebral palsy. She dropped what she was doing and was in our driveway in a matter of minutes. After spending some time with Emily and explaining a bit about CP to me, she told me "unofficially" that she did see some signs of cerebral palsy. She went into some detail about what she was looking for and what it "could" mean. I felt a sense of relief just to know something about cerebral palsy and felt that I could now at least sleep.
October 13, 1995 -- Physical Therapy Evaluation at our home. Among many other things this report stated, "Emily does exhibit increased upper and lower extremity stiffness and a suspect decrease of control in asymmetry of movement on the left side of her body as compared to the right. A positive babinski and unintegrated reflexes including a consistent ATNR may indicate neuromotor dysfunction."
Emily's doctor had recommended a Neurologist in Burlington, Vermont, during that visit where he first mentioned cerebral palsy. He had made the referral and scheduled an appointment for us. Since we were headed to Syracuse for an appointed with a Pediatric Opthamologist (Emily's local eye doctor was on maternity leave), Emily's doctor suggested that we ask the Opthamologist for a referral to a Neurologist in Syracuse thinking that perhaps we could get an earlier appointment. We did just that and the Opthamologist's secretary was able to make an appointment with a Neurologist for us for THAT Friday -- it was now Monday. I was very pleased to have been able to get such an early appointment to quickly get some answers and develop a "game plan" although I knew that I had much reading and learning to do in order to catch up with all that was happening so quickly.
October 20, 1995 -- My mom watched Jimbo and Dad, Emily and I made the 3 hour trip once again to Syracuse. After some waiting, the doctor took us into his office and began asking all of the questions regarding Emily's birth. However, he asked many questions that others had not. He seemed to be focusing on family medical history much like what was asked of us when we went for genetic counseling after I had low AFP results (which turned out to me normal). I inquired why he was asking questions that had not been asked of us by any of the others up to this point. He went on to tell us that he was the only Neurologist to have published work about the link between cerebral palsy and genetics. He was English and had an article published in a Journal in England. I asked for a copy of the article to take home.
The Neurologist spread out a blanket on his office floor and had me place Emily on it, he got on the floor with Emily and spoke to her, flashed a flashlight around, tested if she would track the light, placed her in different positions, etc. All the while he was inquiring about what she did and how she did it as well as what she wasn't doing.
At the conclusion of the visit he addressed that her lack of progress was not a result of lack of stimulation since I was at home full-time with her and that she had a big brother running around playing and such. He indicated that if I were working full-time and left Emily in someone else's care it may be attributable to being neglected. When I asked about the recommended physical therapy that we were already anxious to start, he went into his theory by referring to studies that have taken 100 children with cerebral palsy and given 50 of them physical therapy and not the other 50. He proceeded with the story saying that some of the children in each group made progress, and some of the children in each group did NOT make progress. He said that of course the therapists will say that what they do helps and naturally parents will agree to having their child receive therapy because parents want to do any and all they can for their child.
Later that afternoon, I told my husband what had gone on. He accepted what I had to say and quietly went out to cut some wood. That is just my husband's way. I know now that it is not that he isn't sensitive to my feelings and I have never once TRULY thought that he didn't care. This is just how my husband HAS to deal with such emotionally charged events. I called the Physical Therapist, my neighbor, introduced myself and told her what the doctor had said and explained that I desperately needed to know SOMETHING, ANYTHING about cerebral palsy. She dropped what she was doing and was in our driveway in a matter of minutes. After spending some time with Emily and explaining a bit about CP to me, she told me "unofficially" that she did see some signs of cerebral palsy. She went into some detail about what she was looking for and what it "could" mean. I felt a sense of relief just to know something about cerebral palsy and felt that I could now at least sleep.
October 13, 1995 -- Physical Therapy Evaluation at our home. Among many other things this report stated, "Emily does exhibit increased upper and lower extremity stiffness and a suspect decrease of control in asymmetry of movement on the left side of her body as compared to the right. A positive babinski and unintegrated reflexes including a consistent ATNR may indicate neuromotor dysfunction."
Emily's doctor had recommended a Neurologist in Burlington, Vermont, during that visit where he first mentioned cerebral palsy. He had made the referral and scheduled an appointment for us. Since we were headed to Syracuse for an appointed with a Pediatric Opthamologist (Emily's local eye doctor was on maternity leave), Emily's doctor suggested that we ask the Opthamologist for a referral to a Neurologist in Syracuse thinking that perhaps we could get an earlier appointment. We did just that and the Opthamologist's secretary was able to make an appointment with a Neurologist for us for THAT Friday -- it was now Monday. I was very pleased to have been able to get such an early appointment to quickly get some answers and develop a "game plan" although I knew that I had much reading and learning to do in order to catch up with all that was happening so quickly.
October 20, 1995 -- My mom watched Jimbo and Dad, Emily and I made the 3 hour trip once again to Syracuse. After some waiting, the doctor took us into his office and began asking all of the questions regarding Emily's birth. However, he asked many questions that others had not. He seemed to be focusing on family medical history much like what was asked of us when we went for genetic counseling after I had low AFP results (which turned out to me normal). I inquired why he was asking questions that had not been asked of us by any of the others up to this point. He went on to tell us that he was the only Neurologist to have published work about the link between cerebral palsy and genetics. He was English and had an article published in a Journal in England. I asked for a copy of the article to take home.
The Neurologist spread out a blanket on his office floor and had me place Emily on it, he got on the floor with Emily and spoke to her, flashed a flashlight around, tested if she would track the light, placed her in different positions, etc. All the while he was inquiring about what she did and how she did it as well as what she wasn't doing.
At the conclusion of the visit he addressed that her lack of progress was not a result of lack of stimulation since I was at home full-time with her and that she had a big brother running around playing and such. He indicated that if I were working full-time and left Emily in someone else's care it may be attributable to being neglected. When I asked about the recommended physical therapy that we were already anxious to start, he went into his theory by referring to studies that have taken 100 children with cerebral palsy and given 50 of them physical therapy and not the other 50. He proceeded with the story saying that some of the children in each group made progress, and some of the children in each group did NOT make progress. He said that of course the therapists will say that what they do helps and naturally parents will agree to having their child receive therapy because parents want to do any and all they can for their child.
After getting buckled up in our car, and making our way through the city back to the Interstate, I broke down in tears. I tried desperately to make some sense out of what the Neurologist said. "What DID he say?" As I pondered what had went on, it seemed as though he really didn't say much of anything. What he did infer did not coralate with the little I had been able to absorb this far. I made myself stop crying and spent the rest of ride absorbed in my thoughts.
Naturally the Physical Therapist and others we had seen thus far were extremely interested in what we found out from the Neurologist. I had previously asked Emily's doctor, "Who makes the determination whether Emily has cerebral palsy or not?" and was told that it was either the Orthopedic Specialist or Neurologist, usually they both agree in their findings. When we next saw the PT, she naturally asked about our visit with the Neurologist. I described the visit the best I could and detected some uncomfortableness in the PT's face. Hmmm...maybe there was a reason why this visit was so unsettling to me other than simply being a parent having to deal with all of this so abruptly. The more people we saw, the more people I told about this Neurologist and soon it was confirmed -- not by words because of the professionalism these people have to maintain but by the glances and facial expressions that passed freely around the group. And then I got the report...
..."On Examination: She is about 12 lbs, has a HC of 41 cm, with a large, soft, open ant. fontanelle with no dismorphic features in his hands or feet though her eyes have a subtle mongolian slant. She has the inconsistent eye contact of a one month old!, very worrisome. Getting close to her while talking to her elicits some gaa, and Uuu sounds with sort of a mongolian, soundless bright smile with a wide opened mouth. She can scoot forward inch by inch on her belly with feet and hands (fists and open hands) and elbow propulsion....
"In Conclusion: She is 9 months old, but since she was induced 10 weeks early, she is gestationally only 6 1/2 months old, and one should not expect a higher achievement. Her eye contact, in the backdrop of a normal eye examination ...., very worrisome, as it places her "social development" at less than 50% of the expected, indeed with high risks of major, persistent delays in the future. She is getting a lot of one-to-one stimulation from her mother, always at home, so no deficits could be blamed on lack of stimulation, nor expected to change by other forms of "provided" infant stimulation or therapy. With her mother at home, she is getting plenty and more than enough of what she needs. I would not prognosticate her eventual IQ this early.
"...As for C.P., she does not have it based on her neurological findings. At some point, an MRI of her brain may shed more light into the anatomy of her nervous system and possible even uncover a perticular genetic disease/disorder related to brain bulk/CSF, Germinogenesis/cell migration/heterotpias and/or diseases of the gray or white matter. I do not think her condition, rate of developmental delay has to do with her mother's eclampsia/premature birth or neonatal course or other obstetrical events/care. It is most likely genetic to be further checked."
I had never before had any problems with ANYONE I had encountered in the medical profession. I trusted them all for they knew their field and I didn't. This experience was extremely troublesome to me. I had not had the time to really learn much about cerebral palsy and was trusting what I was learning from all the new people who were suddenly becoming a part of our lives. All the information I was getting from them was consistent until this point. Then the first person we saw that was suppose to be THE one to determine whether or not our daughter has this disability is so far out of whack from everything else that had been told to us. Were my unsettled feelings simply the feelings of a parent who is facing such an ordeal or were they legitimate feelings about this Neurologist? Although all the other professionals reactions confirmed my gut feeling, I still questioned if I wasn't falling subject to the "not my child" syndrome.
What came to be the biggest "joke" of the report was "her eyes have a mongolian slant. ...with sort of a mongolian, soundless bright smile with a wide opened mouth." I have found absolutely NO ONE that can even begin to see where the Neurologist saw this! Sure, I thought that since I was her mother I would think she was beautiful anyway and MAY be able to "not see" this if it did indeed exist, so I became determined to find out from all of the professionals their HONEST opinion.
I was told over and over again that cerebral palsy has absolutely no link to genetics whatsoever. As I began to get books about CP, I was unable to find any reference whatsoever to genetics and CP. Many months later, I dared to read the article this Neurologist wrote and found that the whole second half of the article was contradicting the findings in the first half as he discussed the control groups and such. Of course he was the only Neurologist to have any published work about the link between CP and genetics -- there is NONE! And then it hit me, I should have realized something was fishy when we couldn't get into any other Neurologists for months and we got in with this one the same week the call was placed! Now I know why.
Although it was decided to simply pretend this Neurological evaluation never took place, one thing still lingered in my mind -- "as it places her 'social development' at less than 50% of the expected, indeed with high risks of major, persistent delays in the future." For some reason I continued to question whether we were all correct in our opinion of this Neurologist or if perhaps there may be a tidbit that he may have been correct about. I remembered him explaining to me that for children that are at a development age of less than half of their chronological age, the prognosis of their cognitive ability was not good. Yet, can this really apply to an infant? Especially one that was forced into this world months before it was ready? As I thought about this, I could see where such a statement may have relavence in respect to an older child, say a 10 year old with a developmental age of less than five, but a nearly 7 month old with a developmental age of 3 months? Clearly there is a BIG difference, isn't there? It took me a long time to resolve this in the sanctity of my own mind. But when Emily began to make progress, when it became apparent that she was indeed intelligent and social, well, I'm REALLY glad I was able to get away from those silly remarks that so-called "expert" planted in my head! The thought of how detrimental that all would have been for Emily if I would have taken what that Neurologist said as matter-of-fact. I'm afraid that Emily's prognosis would NOT have been good -- due to a case of learned helplessness because my expectations of her would have been nill!"
October 18, 1995 -- Developmental evaluation performed in our home by Public health. Adaptive (cognitive): 9 1/2 weeks; Fine Motor: 12 weeks;. Language: 15 weeks;. Personal/social: 14 weeks.
WOW! Seeing those numbers -- developmental standings in terms of WEEKS and not MONTHS -- I cried and cried and cried. It took some time for me to put it all into place. I realize now that it is all just part of the "paperchase". It has it's place in the scheme but it's not REALLY all that it seems. It still bothers me some when I see the numbers, BUT I have realized that these numbers aren't truly all that accurate. At first I often talked with Emily's teacher about her cognitive ability. I was rather consumed with knowing about her intellect, her mental ability. Now I realize that even if she had been affected by mental retardation or similar disabilities, she still would have value, have a lot to offer, and most importantly have a "quality" life to experience -- just on a different level than what we know personally. About 8 months ago, I requested an overall evaluation to use in planning what services Emily should have. When these "scores" also seemed low to me, I asked to see the "HELP" chart used for testing. I saw that cognitive ability was rated by such things as, "retrieves a toy that rolls out of sight". How can Emily's cognitive ability be rated on something that she can't physically do? Now I am content in knowing MYSELF what my girl is capable of and merely let these "scores" serve whatever purpose they must in the scheme of her "treatment".
October 26, 1995 -- Evaluation by Orthopedic Specialist. Although the Orthopedic Specialist first questioned me about what the Neurologist had to say, I made him give me his evaluation first and then, after hearing what he had to say, I told him about the Neurological evaluation. When I got this report in the mail, I read it without breathing, but then let out a big sigh, smiled and verbalized a very appreciative "Thank You" for he had taken it upon himself to specifically address all the nonsense things that were in the Neurological evaluation. His report reads,
“...Neurologically, Emily is alert and has a social smile. She has excellent head control. She has slightly increased tone in her upper extremities and slightly more increased tone in the lower extremities. There is full range of motion of the joints. There is no clonus. Conner responses are up going.
"Assessment: I feel it is very early to call this Cerebral Palsy. I do feel she has developmental delays and seems to have some increased tone. She seems to be bright and alert. I discussed this at great length with the mother. I feel that this is likely from her prematurity and not genetic. I suggested that we place Emily in physical therapy twice a week. I am going to see her back in 4 to 6 months. I also made some recommendations as they wanted to get a second opinion for the neurology work up."
One day I was sitting in the living room looking at Emily on the floor thinking about how all of these evaluations made me feel like Emily was just a medical case, a thing to study, to make notes about. I was feeling pretty desperate about wanting my baby to have an identity, to be recognized as EMILY. Just then, Jimbo came along and sat down on the floor beside Emily. He picked up her hand, then leaned over and gave her a kiss. He got up and came over to me and said, "Mom, you got water in your eyes" and left, obviously with something in mind. He returned with a tissue and began wiping Mommy's tears away. I grabbed my little boy and hugged him so tight. My tears changed to tears of joy and I said, "Emily's not alone, is she? She's got you. To you, she's simply your baby sister."
We had another well-baby checkup the end of November. I discussed with the doctor about going to the Neurologist that he had originally recommended. I learned that everything that could be done for Emily was already being done and that we really didn't have anything to gain by having an evaluation done by a "competent" neurologist. I did, however, stress that if anything was to be based on a neurological evaluation, I did NOT want it based on the one we had!
We met with the Orthopedic Specialist on March 21, 1996 -- notes read,
"Emily is now 14 months old. Her tone has increased since I last saw her. She has posturing of both upper extremities. There is increased tone in both the upper and lower extremities. She is abducting her right foot with standing. She's not up on her toes at this point. There are no fixed contractures and her hips abduct to 4 degrees bilaterally. Her back is good.
"Emily continues to get physical therapy. They're getting a corner chair for her and some other positioning devices. She's borrowing a prone stander. The physical therapist wants to use bivalve casts which is fine. I'm going to xray her hips for baseline.The mother has not yet seen a neurologist. I told her that I thought it would be good to see someone for a baseline examination...."
With the onset of spring, I tried placing Emily in the stroller (formerly Jimbo's) but she was too small and did not have the ability to sit up in it. Mom and I and the kids went shopping to see if we could find a stroller more suitable for Emily. We found one that we could add some rolled towels to for support that would serve Emily's needs . I kept Emily in the new stroller as we made our way to the check-out and I was apologizing to my mother because her and my mother-in-law had went in halves to buy the very nice stroller we had for Jimbo. As I did this I said something like "but who would think I would have a child with a ... " Mom stopped me by saying, "Don't say it!!" I was taken aback but tried again to finish my sentence only to be stopped again. I responded with, "Mom I know it's hard but it's not going to help Emily one bit by not facing it." Later I realized that Mom too needed time to adjust, to learn, to feel.
June 27, 1996 -- Orthopedic Specialist agreed with the Physical Therapist that is was time for Emily to get her first pair of solid ankle AFO's. (Braces.)
September 13, 1996 -- Integrated Evaluation/Report: Cognitive 7.5 months; Communication 7.5 months; Social-Emotional 7.5 months; Adaptive/Self Help 7.5 months (chronological age 20 months).
September 18, 1996 -- Neurological evaluation (from a highly recommended Neurologist!) included birth history, past medical history, and family history and then ....
"Emily was a very alert, cute, cheerful baby. She definitely smiled in response to my face. [thoroughly covered visual concerns] ....Spontaneous movement of the arms and legs was symmetrical. However, the right knee jerk definitely appeared to be slightly greater than the left knee jerk. I believe the tone in the right leg is greater than the left but again it was difficult to be certain. There is increased tone on passive movement in both the arms and legs. When pulled from a supine to sitting position she does exhibit a stereotyped flexion of the arms and tends to extend her legs. She did vocalize quite normally in response to sound. She would take objects such as a key and made an effort to take a coin. She uses a whole hand grasp and she would attempt to take it with either hand. Reflexes were generally brisk but it was difficult to assess because of lack of relaxation. The plantar reflexes were either extensor or equivocal. A: Congentinal spastic quadripareses (cerebral palsy).
"Because all four extremities are involved, there is the likely possibility that there is some degree of learning (cognitive) impairment as well."
About this time, that volcano of emotions I referred to earlier completely erupted. I have always been the one to deal with anything and everything, I'm just that type of person. When Emily was born so prematurely, it took me out of work much earlier than we had anticipated. And the circumstances dictated that I would remain out of work much longer. When I reached the realization that I could not predict when I would be able to leave Emily in someone else's care, I told my boss to replace me. We had bought our house while I was pregnant with Jimbo and were preparing our lives as all couples do. Now, financially things were a disaster! But how could I go back to work and leave Emily's future quality of life in a babysitter's hands?
My husband is what many of us women refer to as the "typical man". His concerns focused -- or at least surfaced -- around finances and his ability to "take care of" his family. When my husband came out with, "Are your EVER going back to work?" the volcano exploded all over everywhere! It wasn't a pretty site. The following morning, my husband left for work but returned shortly. He told his boss he had personal things that needed tending to. He told me he was afraid to stay at work because he thought he would return to find me and the kids gone. I feared the same results only not immediately. Somehow I was able to verbalize all that we were NOT communicating and eventually we hit the nail on the head. I said to my husband, "It's as if you expect to wake up one morning to find Emily crawling across the floor and everything be fine." He bit his lip, took a breath and admitted to himself more than to me that I was right. I told him all that I was REALLY dealing with DAILY, all the decisions that I was making virtually by myself, all my worries, all my thoughts, and mostly all the pressure and feelings of being alone -- being Emily's only parent. I shared with him much of what I had learned not only about the disability, but about how having a child with a disability affects the parents, how it affects the way you have to look at the future -- really, truly, not knowing what to expect in any given period of time, how I have to accept all of the unknowns.
Parents have to be extremely careful as they deal with having a child with a disability. We all go through the stages at different speeds, we bring with us different backgrounds and experiences. What turned out to be yet another beginning for us, unfortunately, is an end for many relationships.
SO WHERE ARE WE TODAY? (Written in April of 1997)
Well, we were traveling down a road that we had mapped out and then suddenly found that we were no longer in control of our "vehicle". When the spinning began to slow, we began to look around at the "scenery" on the road we found ourselves on. We have quit looking for that sideroad connecting us to the route we had originally mapped out -- it doesn't exist. We have gotten our bearings back and are once again "in the driver's seat" -- at least, as much as we can be. This is a much slower paced road compared to the highway we planned on taking. Everything is appreciated so much more, little is missed.
Jimbo and Emily are developing the "normal" sibling relationship that I so desired. I was concerned that Jimbo would develop feelings of resentment and not see his sister as a playmate. I identified this as one of my priorities -- something that should NOT get lost in all of this. Each of them likes to play with the other's toys and there are some tug-of-wars. Jimbo sees Emily as a little sister to share his knowledge with and Emily simply adores her big brother. Jimbo often asks, "Where's Emily?" when she not in his sight. He often asks for her to come into his room to play and then in a few minutes reports that he doesn't want her in there anymore because she's getting into his things.
My Mom celebrated her 70th birthday last fall and simply amazes me. She's very anxious to get to know Emily better and learn about caring for her. She has now accepted this situation -- even though it still pains her so. I think she's real close to complete acceptance and understanding, although, we still have a way to go.
Dad and Emily have came a long way too. Dad has made slow attempts at gaining Emily's trust and it seems to be working. He often attempts to care for her and is much more patient with her attempts at resisting. She is so very much like her father, sticking to what she wants and resists accepting anything else! Dad has learned this part of her personality and now we smile about it. After all, the Orthopedic Specialist spotted this determination early on and told me that although he knew it probably didn't seem like a good thing when you are her parent, it was the best quality any one could hope for in a child with CP -- it's what will give her the winning edge.
I have recently discovered a program that addresses therapy quite differently than the "conventional" methods. I am very excited about it and am going to start Emily in this curriculum. Rather than continuing to teach Emily to sit on the floor and crawl, two things that I don't believe she can do until after she has surgery on her legs, this program would address what functional needs are appropriate for Emily. Well, she's two-years-old, she needs to be able to move from room to room and pester her big brother. We already have the Rifton Gait Trainer which was made for this program -- M.O.V.E. International.
Yesterday, as I was about to prepare dinner Emily began to protest being on the floor as she now has became tired of seeing the world from the bottom up. It dawned on me that she really should be at my side as I prepared dinner. So I tucked Emily under my left arm and marched into the bathroom, grabbed the Velcro strap from her bath chair and went back to the kitchen. I grabbed a kitchen chair and placed it at the counter backwards, stood Emily on it and secured her to the back of the chair with that Velcro strap. My daughter was at my side as I fixed dinner and she loved it! Those deep brown eyes looked at me repeatedly glimmering with pride. And I realized that there had been a longing in my heart to have my daughter there to teach about all those "girl things"! She's gonna be spending a LOT more time at that counter!
Most of all, I feel as though I now REALLY have it! The very biggest part of what will determine Emily's future is ATTITUDE -- and that IS something I can give her -- something I can CONTROL!! It will be interesting to look back on what I have written here in a year from now -- I wonder where we will be?
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