I remember the first movie I saw (at least I think I do), it was "Annie." I remember the first movie that Alison saw was "Curious George." I am sure Jason would remember his first movie as well if I asked him.
I also have fond memories of the theater. I was in theater camp as a teenager and then worked as an usher and backstage for the theater near where I grew up. When I was in middle school and high school choir we would go to New York City to see a show at the end of the year. I love live theater and that was mostly why we went there this past summer and I took Alison to see a show. Jason and I both enjoy plays and musicals and want to share that love with both our children.
Daniel does not have a first movie yet. There have been one or two movies that we considered taking him but it is very difficult to think that through. First, if he cannot sit through the movie then that would mean one of us would need to leave before the movie is over. Then, we need to consider that he talks and repeats and sometimes yells out so he may cause a disruption. Finally, there is just no telling if he will really care about the movie or get anything out of it. It would be great to take him to the movies or the theater and maybe when he gets older that will be doable but what if it isn't? We would like to do things as a family as much as possible and not being able to take him along to see a movie or go to a show is somewhat heartbreaking to me.
Saturday, December 31, 2011
Thursday, September 15, 2011
When I first got accepted to Drexel University and got awarded a partial academic scholarship as well, I really thought that at any day "they" would come and take it away from me. I figured that at some point people would realize that they made a mistake, gave the award to the wrong person, by no means did I deserve it.
Fast forward some (okay many) number of years and this is the same way I feel about being a mom. I feel that at some point "they" are going to come along and say--"oops, we made a mistake you are not a good enough mom and don't deserve this." I don't know what makes me think this really. I try to be the best mom that I can possibly be to my kids and yet I always feel that I fall short, that I could be doing more and that some other mom would be better at raising them then me. I know (logically) that I am doing the best, but I can't help think this way. I wonder if other moms feel this way (parent of a child with disabilities or not)?
Fast forward some (okay many) number of years and this is the same way I feel about being a mom. I feel that at some point "they" are going to come along and say--"oops, we made a mistake you are not a good enough mom and don't deserve this." I don't know what makes me think this really. I try to be the best mom that I can possibly be to my kids and yet I always feel that I fall short, that I could be doing more and that some other mom would be better at raising them then me. I know (logically) that I am doing the best, but I can't help think this way. I wonder if other moms feel this way (parent of a child with disabilities or not)?
Sunday, July 17, 2011
Future thinking
Earlier tonight, Alison asked me, "When Daniel is older, will he still have special needs?"
"He may," I said. "We hope that he'll keep getting better, but he may he still have special needs."
"I don't want him to have special needs as an adult," said Alison.
Now my mind goes into fast-forward. Does Alison envision a day when she may be tapped to be responsible for Daniel's well-being? Will adult Alison have to take care of her adult brother as if he were her own child? This is certainly something that has crossed my mind more than once.
Then Alison interrupts my brain wander: "I just don't want his kids to make fun of him."
Monday, July 11, 2011
Travels with Daniel
We went on a trip this weekend. A sort of mini vacation. We took a long train ride to New York City and stayed for 3 nights in a hotel in the city. It is a trip we have been anticipating for a long time. We managed to do a lot in a 4 day weekend including see a Broadway show, going to the top on the Empire State Building and going to Times Square. All and all it was a great (but short) trip. There was something for everyone.
On our way back home I had the chance to reflect on the trip and how much of a challenge it was to travel with Daniel in his wheelchair.
It started at the train station to go to New York, Daniel was in his wheelchair but the train wasn't level with the platform so we needed to carry him up the stairs, then carry his chair then the luggage. That was the least of our problems. Getting out of Penn Station was difficult because there was only one elevator in the entire station (that I could determine). We searched and finally found it. That train station was nothing compared with the NYC Subway system which may or may not have an elevator (I am not sure because we did not see one). Jason had to end up carrying Daniel down the stairs, while he sat in his wheelchair. This occurred a few times. Then of course there are the Taxis and the sidewalks in NYC which are handicapped equipped but when crowded, it is difficult to push through.
I don't think I really realized the really sad thing about travelling with a child in a wheelchair until we were in the train station to come home. We needed an elevator again but the thing was that we did not know our train platform number until it came in. We asked for help and we were designated to a small area of the station which houses those individuals needing special assistance. We were passed on and given no information on where the elevators were located (seriously that is all we needed, we did not need help with our bags or anything else!). Finally when it came time to go to the platform, we were directed to an attendant who clearly wanted to be anywhere but there and he showed us that. It was horrible. Once we got down to the sold out train, our guide just found an empty spot on the train for our luggage and dropped us there. We had to sit for a while with Daniel on Jason's lap (even though we paid for a ticket for him). It all left a very bad taste in my mouth not just for our situation but especially for people with disabilities in general. There was no respect, no compassion, not even a little bit of sensitivity.
Daniel may very well learn to walk someday, but for the most part he will always have some challenges and now I know this is what he will need to deal with. For the time being we deal with it on his behalf. For the time being I will do everything in my power to change things for the better for Daniel and for all the other people with disabilities who want to travel the world.
On our way back home I had the chance to reflect on the trip and how much of a challenge it was to travel with Daniel in his wheelchair.
It started at the train station to go to New York, Daniel was in his wheelchair but the train wasn't level with the platform so we needed to carry him up the stairs, then carry his chair then the luggage. That was the least of our problems. Getting out of Penn Station was difficult because there was only one elevator in the entire station (that I could determine). We searched and finally found it. That train station was nothing compared with the NYC Subway system which may or may not have an elevator (I am not sure because we did not see one). Jason had to end up carrying Daniel down the stairs, while he sat in his wheelchair. This occurred a few times. Then of course there are the Taxis and the sidewalks in NYC which are handicapped equipped but when crowded, it is difficult to push through.
I don't think I really realized the really sad thing about travelling with a child in a wheelchair until we were in the train station to come home. We needed an elevator again but the thing was that we did not know our train platform number until it came in. We asked for help and we were designated to a small area of the station which houses those individuals needing special assistance. We were passed on and given no information on where the elevators were located (seriously that is all we needed, we did not need help with our bags or anything else!). Finally when it came time to go to the platform, we were directed to an attendant who clearly wanted to be anywhere but there and he showed us that. It was horrible. Once we got down to the sold out train, our guide just found an empty spot on the train for our luggage and dropped us there. We had to sit for a while with Daniel on Jason's lap (even though we paid for a ticket for him). It all left a very bad taste in my mouth not just for our situation but especially for people with disabilities in general. There was no respect, no compassion, not even a little bit of sensitivity.
Daniel may very well learn to walk someday, but for the most part he will always have some challenges and now I know this is what he will need to deal with. For the time being we deal with it on his behalf. For the time being I will do everything in my power to change things for the better for Daniel and for all the other people with disabilities who want to travel the world.
Friday, June 10, 2011
The Special Mother
When I first became a mother I felt in over my head. I imagine that I am not the only mother to feel that way with a newborn. I wasn't sure how to care for this precious little life that was given to me. I learned, but slowly and I am in no way an expert at this parenting thing. By the time Daniel came, I can't say I was any more experienced with my 3 1/2 year old. I did not have the patience, did not feel that I was overly caring though I loved (still love) my kids dearly I would never identify myself as a Mother Teresa type (not the Mommy Dearest type either though).
My point is, I would not peg myself as the mother of a child with special needs. Not that there is a mother out there who says, "Pick me! Pick me!" for a child with special needs, it is sort of thrust upon us. I just wonder how it is decided. Would Daniel have picked me had he the choice? Does he think I am strong enough? I cannot say that I believe in a higher power with 100% certainty. I have my issues with all of that, but I recently read how a "Special Mother" is chosen and it really made sense to me:
My point is, I would not peg myself as the mother of a child with special needs. Not that there is a mother out there who says, "Pick me! Pick me!" for a child with special needs, it is sort of thrust upon us. I just wonder how it is decided. Would Daniel have picked me had he the choice? Does he think I am strong enough? I cannot say that I believe in a higher power with 100% certainty. I have my issues with all of that, but I recently read how a "Special Mother" is chosen and it really made sense to me:
The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."
Sunday, April 10, 2011
Sometimes, It is just Hard
This parenting thing is not for the lighthearted.
I am not complaining or anything. I love both of my children dearly and would never once want anything different than to be a mom to both of them, but let me tell you, it is not easy.
We have one special needs child, which no doubt comes with challenges and obstacles almost daily, but some days those challenges can be even more difficult to deal with.
Daniel is usually very happy and smiling and a charming little boy, but when he gets upset--he gets upset. The other day he spent the entire day with grandma and papa and when I picked him up to take him home, maybe it was a lack of a nap or the fact that he was leaving them or maybe it was because he was watching Raffi and didn't want that to end, but we got in the car and away he went. He proceeded to cry all the way home, when we got home and almost all the way up until bedtime. I picked him up at 4:30 and he doesn't go to bed until about 7:30 or 8:00pm. These times are hard. It is different then when Alison was his age and got upset because we used to tell her to use her words. With Daniel, he doesn't have very many words to use to express his feelings and so he just proceeds to scream. The other thing is that Daniel is delayed and this is actually temper tantrum behavior that we would typically see at the 2-3 year old mark even though he is 4 and a half years old. It is just hard to know how to deal with him in these situations. Distraction doesn't work, music (normally a great distraction) doesn't work and we are left trying to ignore the screaming tantrum that (if rewarded) would demonstrate that screaming is the way to get what he wants.
It isn't all about Daniel though. Those mainstream kids will sneak up on you with their own problems too. Alison has always been a very "dreamy" kind of girl. She is so very good at going into her own "world" and making up stories, but that has unfortunately gotten her into trouble. The other part is that she is a perfectionist and when things don't go exactly the way she has planned, then the whole world is going to blow up! She is also very dramatic. She came home from school crying the other day and apparently she had a bad day. The point is that we need to help her find tools to control her emotions and work through those times when she loses focus and when things are not going according to plan.
She said last night that she felt like a "special needs kid," and we told her that she is not, but just like Daniel needs a wheelchair because he cannot walk, she needs tools to help her too. It is hard.
Like I said though, both of these kids are my world and I would not trade them for anything in the whole wide world, but they both should have come with a disclaimer so that we knew what to expect. I am afraid too that this is really only the very beginning.
I am a parent in progress.
I am not complaining or anything. I love both of my children dearly and would never once want anything different than to be a mom to both of them, but let me tell you, it is not easy.
We have one special needs child, which no doubt comes with challenges and obstacles almost daily, but some days those challenges can be even more difficult to deal with.
Daniel is usually very happy and smiling and a charming little boy, but when he gets upset--he gets upset. The other day he spent the entire day with grandma and papa and when I picked him up to take him home, maybe it was a lack of a nap or the fact that he was leaving them or maybe it was because he was watching Raffi and didn't want that to end, but we got in the car and away he went. He proceeded to cry all the way home, when we got home and almost all the way up until bedtime. I picked him up at 4:30 and he doesn't go to bed until about 7:30 or 8:00pm. These times are hard. It is different then when Alison was his age and got upset because we used to tell her to use her words. With Daniel, he doesn't have very many words to use to express his feelings and so he just proceeds to scream. The other thing is that Daniel is delayed and this is actually temper tantrum behavior that we would typically see at the 2-3 year old mark even though he is 4 and a half years old. It is just hard to know how to deal with him in these situations. Distraction doesn't work, music (normally a great distraction) doesn't work and we are left trying to ignore the screaming tantrum that (if rewarded) would demonstrate that screaming is the way to get what he wants.
It isn't all about Daniel though. Those mainstream kids will sneak up on you with their own problems too. Alison has always been a very "dreamy" kind of girl. She is so very good at going into her own "world" and making up stories, but that has unfortunately gotten her into trouble. The other part is that she is a perfectionist and when things don't go exactly the way she has planned, then the whole world is going to blow up! She is also very dramatic. She came home from school crying the other day and apparently she had a bad day. The point is that we need to help her find tools to control her emotions and work through those times when she loses focus and when things are not going according to plan.
She said last night that she felt like a "special needs kid," and we told her that she is not, but just like Daniel needs a wheelchair because he cannot walk, she needs tools to help her too. It is hard.
Like I said though, both of these kids are my world and I would not trade them for anything in the whole wide world, but they both should have come with a disclaimer so that we knew what to expect. I am afraid too that this is really only the very beginning.
I am a parent in progress.
Monday, March 14, 2011
Something I wrote about you
I entered a writing contest a while ago. The theme was, "I never thought I'd..." I did not win the contest or come anywhere near winning but I was proud of myself for writing and entering the contest. Thought I would share as I never thought I would be a good enough mom for Daniel:
When my daughter was born she was born ready to go. She was not going to let a cord snug around her neck slow her down. She wanted to move whenever she was awake. She was also so smart, that she knew if you were tricking her by pushing her in the stroller instead of walking her around at night. She either wanted to be outside or picked up and held in my exhausted arms.
My husband and I were delighted to watch her grow and she soaked up all of the information we gave her. I was lucky enough to be a stay-at-home mom for the first six months of her life. When I needed to go back to work, we found an awesome Spanish immersion preschool for her to attend and just like that she was becoming bilingual!
I went to work as a pediatric dietitian in a large teaching hospital where they treat very high risk patients. I was working with many children who had major health problems and delays. Dealing with this everyday made it difficult to see my daughter and think about what could happen to her. Something so simple could go so wrong. I hated to think about that and I struggled to see the parents of these children. I was so saddened to think about what they must be going through.
These parents were amazing and seemed to have strength wrapped up with courage. I looked at these parents in awe never once believing that I could do what they were doing. I thought that if I ever had a child with disabilities that I would be unable to be so strong. I was thankful that I had a very happy and healthy daughter. Whenever I looked at the parents of these children I would think about how lucky I was. I also realized how it can all go wrong in one second. Something that happens even before you realize you are pregnant. It could even be something that happens in childbirth. I would think about these parents and wonder how they could find the strength to go on and continue to love with a full heart.
These children were the most special in my heart too. They gave off such light and love that I knew their parents managed because of that alone. It was still difficult for me. I know I am a strong person having overcome many obstacles in my life, but I felt that I would not have that kind of strength.
I was glad when I started working with the adult population. At that particular time in my life, I was taking my work home with me. I would over analyze my daughter’s every sniffle, thinking she had some terrible disease. When working with adults I didn’t always have a picture of my daughter’s eyes in the eyes of the patient. I still kept those children in my thoughts constantly.
I had my own daughter to focus on though, and soon enough I was pregnant with my second child. I found the true meaning of the saying that “ignorance is bliss”, because I felt that I knew too much about what could go wrong. I figuratively held my breath throughout that pregnancy, but luckily my son was born after 39 weeks. He was perfect. He was nine pounds and the completion of our family. We had our beautiful daughter and our handsome son. I saw before my eyes, two children who would grow up and have fights along the way but as brother and sister they would always love each other. I saw a picture of my little boy chasing after his big sister, and of him one day standing up for his big sister if need be. It was all I ever wanted.
The first few months are always hard with a newborn. With my daughter, as I said, she was born ready to go. With my son it seemed he was pretty miserable for his first three months of his life. He had terrible reflux, so bad that he would wretch his head back so violently. He was so little, but in so much pain and he was so strong. We had him on medication and changed his formula but really most of the time was spent trying to keep him comfortable.
It seemed after three months though, he perked up. He was a brand new child who was smiling and laughing and feeding and sleeping well. We thought the worst was behind us and we began to enjoy this amazing little boy that we had been blessed with.
I should say that after having a second child you are constantly comparing milestones between your first and second. Our daughter was right on target with all her milestones and I started to look at our son to be right along with her. Logically I knew he would be different and that it was not fair to him to compare, but I fully expected that there would be little difference in the two siblings.
I don’t really know what struck me first. I think it was the fact that he would not grab for a toy, or maybe it was the obvious lack of control when it came to rolling over or trying to sit up at 6 months. He also had very little interest in toys. My mother took care of him during the day and she also noticed the lack of interest in toys and the inability to sit up or roll over or even reach out with his arm. At his six month well check appointment we talked with the pediatrician and she agreed and immediately referred him to Early Intervention. She also recommended that we talk with a Physiatrist or physical medicine and rehab physician. We were referred to one at the
hospital where I worked. The physiatrist was quick to order an MRI to see what, if anything was going on in the brain.
My son started seeing a physical therapist but around this point, my husband got a job offer in another state. Everything felt rushed, we had the MRI done and were quickly told of the results but not what they meant. We were referred to a neurologist in the area where we were moving and that was pretty much it. We moved, got set up with early intervention and went to the neurologist with the MRI in hand. A few weeks later, I was on the phone with the neurologist and he explained what our son had. He told me that even before I knew I was pregnant that my sons’ brain did not develop the way it should have. He has a smaller than normal corpus collosum and some other fancy worded things going on in the brain. Ultimately he has a diagnosis of cerebellar vermis hypoplasia.
Upon hearing that my son was not normal I was immediately picked up and transported to a new land. In this land I did not speak the language and everything and everyone moved in slow motion. I was alone in this land and was trying desperately to get back to a place that was familiar. It was as though I were in a pool of mud-trying to keep my head up and trying not to drown. What happened? How? Why? What were we going to do? There were so many unanswered questions. Would my boy ever crawl, walk, talk. What would he be able to do? The doctors couldn’t tell us. His therapists and teachers could not say. His future was a mystery, his prognosis, a guess.
We tried to make sense of it all. We started a blog and wrote our feelings. We leaned on family and friends to help us navigate this new land. We also looked to our son to help us. He was no different from the boy we loved before the diagnosis. In fact, he was the same little boy all along. We grieved but we saw in our son the wonderful boy that he is and we saw all the wonderful things he could do and was learning to do--just a little slower.
Our son and our daughter both have endless possibilities for their future. In fact, though our daughter has no diagnosis we still are unsure about her future as well. We just take it one day at a time. Our son is four years old and even though he doesn’t crawl or walk yet and he says only a few words, he is the light of our life. We love him and it is easy to take care of him.
As for me, I didn’t think I was strong enough. Like the moms I saw in the hospital, I never thought I could be that strong. Now I realize that it is not strength I needed to gain, but it is the love I had all along that will get us through this.
When my daughter was born she was born ready to go. She was not going to let a cord snug around her neck slow her down. She wanted to move whenever she was awake. She was also so smart, that she knew if you were tricking her by pushing her in the stroller instead of walking her around at night. She either wanted to be outside or picked up and held in my exhausted arms.
My husband and I were delighted to watch her grow and she soaked up all of the information we gave her. I was lucky enough to be a stay-at-home mom for the first six months of her life. When I needed to go back to work, we found an awesome Spanish immersion preschool for her to attend and just like that she was becoming bilingual!
I went to work as a pediatric dietitian in a large teaching hospital where they treat very high risk patients. I was working with many children who had major health problems and delays. Dealing with this everyday made it difficult to see my daughter and think about what could happen to her. Something so simple could go so wrong. I hated to think about that and I struggled to see the parents of these children. I was so saddened to think about what they must be going through.
These parents were amazing and seemed to have strength wrapped up with courage. I looked at these parents in awe never once believing that I could do what they were doing. I thought that if I ever had a child with disabilities that I would be unable to be so strong. I was thankful that I had a very happy and healthy daughter. Whenever I looked at the parents of these children I would think about how lucky I was. I also realized how it can all go wrong in one second. Something that happens even before you realize you are pregnant. It could even be something that happens in childbirth. I would think about these parents and wonder how they could find the strength to go on and continue to love with a full heart.
These children were the most special in my heart too. They gave off such light and love that I knew their parents managed because of that alone. It was still difficult for me. I know I am a strong person having overcome many obstacles in my life, but I felt that I would not have that kind of strength.
I was glad when I started working with the adult population. At that particular time in my life, I was taking my work home with me. I would over analyze my daughter’s every sniffle, thinking she had some terrible disease. When working with adults I didn’t always have a picture of my daughter’s eyes in the eyes of the patient. I still kept those children in my thoughts constantly.
I had my own daughter to focus on though, and soon enough I was pregnant with my second child. I found the true meaning of the saying that “ignorance is bliss”, because I felt that I knew too much about what could go wrong. I figuratively held my breath throughout that pregnancy, but luckily my son was born after 39 weeks. He was perfect. He was nine pounds and the completion of our family. We had our beautiful daughter and our handsome son. I saw before my eyes, two children who would grow up and have fights along the way but as brother and sister they would always love each other. I saw a picture of my little boy chasing after his big sister, and of him one day standing up for his big sister if need be. It was all I ever wanted.
The first few months are always hard with a newborn. With my daughter, as I said, she was born ready to go. With my son it seemed he was pretty miserable for his first three months of his life. He had terrible reflux, so bad that he would wretch his head back so violently. He was so little, but in so much pain and he was so strong. We had him on medication and changed his formula but really most of the time was spent trying to keep him comfortable.
It seemed after three months though, he perked up. He was a brand new child who was smiling and laughing and feeding and sleeping well. We thought the worst was behind us and we began to enjoy this amazing little boy that we had been blessed with.
I should say that after having a second child you are constantly comparing milestones between your first and second. Our daughter was right on target with all her milestones and I started to look at our son to be right along with her. Logically I knew he would be different and that it was not fair to him to compare, but I fully expected that there would be little difference in the two siblings.
I don’t really know what struck me first. I think it was the fact that he would not grab for a toy, or maybe it was the obvious lack of control when it came to rolling over or trying to sit up at 6 months. He also had very little interest in toys. My mother took care of him during the day and she also noticed the lack of interest in toys and the inability to sit up or roll over or even reach out with his arm. At his six month well check appointment we talked with the pediatrician and she agreed and immediately referred him to Early Intervention. She also recommended that we talk with a Physiatrist or physical medicine and rehab physician. We were referred to one at the
hospital where I worked. The physiatrist was quick to order an MRI to see what, if anything was going on in the brain.
My son started seeing a physical therapist but around this point, my husband got a job offer in another state. Everything felt rushed, we had the MRI done and were quickly told of the results but not what they meant. We were referred to a neurologist in the area where we were moving and that was pretty much it. We moved, got set up with early intervention and went to the neurologist with the MRI in hand. A few weeks later, I was on the phone with the neurologist and he explained what our son had. He told me that even before I knew I was pregnant that my sons’ brain did not develop the way it should have. He has a smaller than normal corpus collosum and some other fancy worded things going on in the brain. Ultimately he has a diagnosis of cerebellar vermis hypoplasia.
Upon hearing that my son was not normal I was immediately picked up and transported to a new land. In this land I did not speak the language and everything and everyone moved in slow motion. I was alone in this land and was trying desperately to get back to a place that was familiar. It was as though I were in a pool of mud-trying to keep my head up and trying not to drown. What happened? How? Why? What were we going to do? There were so many unanswered questions. Would my boy ever crawl, walk, talk. What would he be able to do? The doctors couldn’t tell us. His therapists and teachers could not say. His future was a mystery, his prognosis, a guess.
We tried to make sense of it all. We started a blog and wrote our feelings. We leaned on family and friends to help us navigate this new land. We also looked to our son to help us. He was no different from the boy we loved before the diagnosis. In fact, he was the same little boy all along. We grieved but we saw in our son the wonderful boy that he is and we saw all the wonderful things he could do and was learning to do--just a little slower.
Our son and our daughter both have endless possibilities for their future. In fact, though our daughter has no diagnosis we still are unsure about her future as well. We just take it one day at a time. Our son is four years old and even though he doesn’t crawl or walk yet and he says only a few words, he is the light of our life. We love him and it is easy to take care of him.
As for me, I didn’t think I was strong enough. Like the moms I saw in the hospital, I never thought I could be that strong. Now I realize that it is not strength I needed to gain, but it is the love I had all along that will get us through this.
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