Matt's story is one that I write in order to assist other families with children diagnosed with some form of ACC. The information contained here was written with emotion and heavily laced with my own strength of faith. I can only hope that reading our story will somehow help or perhaps validate another's emotional roller-coaster ride in raising a child with multiple disabilities. 

Fetal Development & Delivery:

My pregnancy with Matthew was not routine by any means and vastly different from his older sister's. At approximately 6 weeks gestation, I fell ill with a bad case of Chicken Pox; I had just been told two days previously that I was pregnant. As a child, I had Chicken Pox, but later found out from my mother that my childhood case had been light. Unfortunately, the condition was not recognized during the first critical 36 hours after the initial symptoms appeared. During those 36 hours, I was treated for severe dehydration on 3 occasions in the emergency room. The doctors were aware of my high fever and eventual display of skin pustules. By the last E.R. visit, the condition was finally diagnosed as a severe case of Chicken Pox. Yet, I was again sent home with the usual instructions to drink plenty of fluids and get plenty of rest. I also had the additional misfortune of suffering 'morning sickness' with considerable nausea during this period. Rest was all I wanted! But, the discomfort of the illness and the needs of my little 18 mo old daughter whose father was deployed for training did not allow much rest. Not to mention, the emotional distress of worry over what this virus would do to my unborn child. When I asked the doctors how this condition would affect my baby, I was told that I would probably miscarry. . .

At approximately eight weeks gestation, my body did threaten to abort the fetus. Again, I visited the E.R. - this time for vaginal bleeding, I was terrified of what the doctors would say. This visit, I was able to see a caring family physician who explained that my body was trying to abort. The rush of blood was caused by a broken vein outside of the uterus probably due to the opening of the cervix which was no longer sealed and 1 cm dilated. I would probably lose the baby within days. This doctor showed much concern and feeling for my emotional as well as physical well-being. He was also angry over the fact that he was not called at the onset of the initial illness. Chicken Pox is extremely dangerous for pregnant women and must be monitored carefully. He recently had a pregnant patient die from complications caused by the virus. Now, there was nothing he could do except prescribe complete bed rest and he called my husband home to care for us.

At this point, I went home and prayed for the health of my child and the strength to deal with whatever was to happen. I knew that something was wrong with my baby which was why my body was threatening to abort. I prayed to God to let me keep the child; but, I knew that I could not handle it if the child would be grossly disfigured or otherwise severely health compromised. I surrendered myself and my unborn child to God's will.

The pregnancy was long and fraught with fear of loss at times. I continued to mildly bleed until my fifth month. Then all bleeding stopped and the pregnancy appeared to be progressing well. I was not gaining as much weight as my first pregnancy nor did the child move as much. In fact, the baby liked to lay sideways kicking my right side. He also had hiccups almost daily. I had one intense craving - lots of cold ice water.

By approximately 28 weeks gestation (only approx. 6 weeks after the bleeding stopped), I began pre-term labor. The labor began with lower back pain and I just wasn't feeling well. I just happened to have a regular scheduled OB appointment. When I complained of the back pain, they decided they had better check and I found out that I was 2 cm dilated and was having regular contractions. This was a surprise to me! This beginning labor was nothing like my previous one. For one, I didn't have back labor with my daughter and didn't realize the pain for what it was. I was placed in the hospital and given Terbutaline by I.V.

After a couple of days, I was sent home and given Terbutaline tablets to be taken every 4 hours and scheduled to be seen by my OB/GYN doctor a few days later. I went to that appointment, again, with the complaint of back pain. Again, I was admitted to the hospital. My body could not tolerate doses of the medication at 4 hour intervals. I required smaller doses every 2 hours. Because of the intolerance to the medication, it was determined that I would need to stay hospitalized for the remainder of the pregnancy. I still had over two months to go!

It was a long time to wait. But, each day brought added strength to the life inside me. I had to keep focused on that goal and try to not worry about my little toddler waiting for her mommy to come home. I saw her daily and she was extremely delighted to play with her grandmother so much but I sure missed being there for her. The doctors were pleased with all the test results and ultrasounds. The baby appeared to be progressing normally although small. They also worried that I didn't gain much weight. I gained a total of 12 pounds and my body just seemed to refuse to gain more. During my first pregnancy, I had gained 50 lbs. The doctors also cautioned me that when the time came, they might have to induce labor since I was on the medication for so long.

Finally! The day arrived! I was taken off the medication to stop labor. Within hours, I began labor again. Hmm, what was that about needing to induce labor? Yeah right! My child wanted to be born and appeared to be impatient about it. My contractions were 5 minutes apart for over 12 hours -- then stopped! I was released to go home. For nearly a week we played this game of on-off labor (all of it - back labor). When in labor, contractions stayed at about 5 minutes apart. Dilation finally reached a full 4 cm and the doctors decided to break my water - by all estimates and the ultrasounds showed my child to be at 38 weeks gestation.

That did the trick! Within 1 ½ hours after my water broke. My son was born! The delivery was completely natural and routine. His APGAR scores were 7 and upgraded to 9 a few minutes later. He was given 'blow-by' oxygen as he appeared slightly blue at first before turning quite red. His cry was weak. The nurses whisked him away after only giving me a very brief peak at him. I later found out that they rushed him out to do some testing and they decided that although he appeared healthy - he tested to be only 36 gestational weeks. He was considered a Preemie. But, he did not require an incubator. He was 6 lbs, 2 oz and 19 ½ inches long.

His skin was very delicate. The diapers (with leg gathers) literally tore off the skin around his little legs. We also found that I was unable to breast-feed. Matthew could not suck strongly enough and was not getting any nourishment. Not that he cared, all he wanted to do was sleep. We had to wake him up and try to make him eat. It took over 1 ½ hours to drip ½ ounces of formula into him. (breast pumps were not an option at this hospital - another long story) We started this process every 3 hours from the time of the start of the last feeding -- Yep, we were constantly feeding him. No wonder he remained tired! I know I was exhausted! But, it was worth it as we didn't want the nurses to feed him by IV or tubes due to his low sugar levels.

He had lost nearly a pound since his birth 3 days before. The doctors said that it was normal for babies to lose a few ounces after birth and since he had feeding problems his loss of weight was more noticeable. Nevertheless, he was still over 5 pounds so we were able to take him home. A day after his release, he became mildly  jaundiced. We were assured this was normal especially for a "preemie". We were instructed to lay him in a window to get plenty of sunlight. It took a couple of weeks, but eventually the jaundice condition finally went away.

It took longer for the feeding problems to resolve. Matthew made steady progress and slowly gained strength. It was quite a relief when he was able to drink 2-3 ounces in a span of about ½ hour when he was about 2 weeks old. From that point on, he kept steadily taking more food. (Later, he would have major problems with solid food). His skin condition remained a problem for months. I couldn't use any soap on his skin; it would basically take the hide right off of him. Baby wipes for diapering were also a no-no. Only clear water could be used for any cleaning of his little body. Although, he remained skin sensitive through-out his toddler years, we gradually were able to begin using the mildest of products after the first couple of months when the redness of his skin finally went away.

Emerging Personality & Infant Development

During his first few months, there were many differences between his physical appearance, personality, and development compared to his sister's at that same age span. His body was more rigid making it difficult to diaper or dress him. He also refused to lay on his side, rolling onto his back. He absolutely hated lying on his stomach. Thereby, he developed a flattened area on the back of his head rubbing off hair in one spot. His facial features gave him a look similar to Down's Syndrome but not quite as prominent. He also did not like to cuddle. He did not want to be held for long making him fretful. It was like he wanted the attention, but then couldn't stand it. Yet, he always wore a smile whenever someone was in his view and was quite alert to his surroundings.

Developmentally, he learned to roll quickly - but in everything else - he was very slow. He was almost 6 months of age before he could fully hold his head up - although, he had lifted his head to move it during the his first month. We were told he was a 'preemie' and a boy - give him time and he will catch up. He also was not sitting up nor attempting to crawl at the expected age. His weight was another problem. Weight gain was very slow and he remained at just barely the 5th percentile on all the charts. His sister always ranged at the 95th percentile. By his six-month well-baby check, concerns were high in our house. My mother-in-law, a pediatric nurse, went with us to the appointment. She told the doctor of her concerns for his developmental delay and for the first time - notice was finally given! That day, we were scheduled for a CAT scan, and to see a pediatric neurologist within 2 weeks!

Diagnosis

The visit to the neurologist was both enlightening and devastating. Upon initial exam, the doctor remarked on the features which are similar to Down's syndrome. Yet, Matt did not have the Down's hand creases. I tried to explain that the shape of his eyes and his nose were very much his paternal grandfather's genetics. Nevertheless, Matt was scheduled for a host of metabolic and genetic screenings. The only other remarkable physical traits were his increased muscle tone and developmental delay. It was decided that Matt would complete the CAT scan and return in two weeks - after the blood screenings were completed.

The CAT scan was scheduled in the same complex as the neurology offices so we headed over there. By this time, we had been there all morning and Matt was fussy. The CAT techs wanted to sedate Matt, but I asked if I could try to get him to sleep; they agreed. After Matt was placed in a strap board (to hold him still during the scan). I gave him his blanket, stroked his hair, and sang to him. The whole time praying God would make my child sleep so he wouldn't have to be drugged. The Lord was with us that day, I could actually feel God's presence, as Matt drifted off to sleep. What was awesome - Matt slept right through the whole scan, even though the table was jerked hard several times shaking him with each twist and turn of the massive machine surrounding him. The scan lasted for over 45 minutes. I remained in the room incase Matt awoke. During that time, I noticed they had called the Doctor down to look at something on the scan. Finally, it was over and my baby was brought out of the cavernous machine. Just as I reached his side, Matthew opened his eyes and smiled at me. He was fully awake now that the scan was over. I knew then, the Lord had touched Matthew to make him sleep. My prayers had been answered.

I guess the Lord knew we would need a small blessing to hold onto that day. Originally, we had been told to go on home after the scan. But before we could leave, a nurse asked us to please go into one of the exam rooms as the doctor needed to talk with me. We had to wait for a little bit, as the doctor was extremely busy with other patients. When he arrived, the first thing he said was, "Is there anyone else here waiting for you? - Do you have someone you can call to be with you?" My answer was no to both questions, as we are a military family far from family and my husband was stationed overseas. By this time, I knew something was not good and the doctor appeared to hesitate. I asked him to please tell me what was going on. He then told me that the scan revealed the problem and we probably needn't look any further - however, it was a good idea to go ahead and complete the scheduled blood workups as a full diagnostic measure. By this time, I was really worried. He then told me that Matthew had Agenesis of the Corpus Callosum with some mild occipital and temporal passive ventriculomegaly. Tears began to fall as I asked him what that meant. He explained that Matt was born without the Corpus Callosum in the brain. The 4th ventricle was especially enlarged. which is usually placed midline (over the corpus callosum), had shifted causing brain damage to the left side.

At this point, I burst into full blown tears and sobs. I held my baby very tightly to me and asked what would this condition do to my son. Would he die? What can we expect? He explained that Matt should live a normal lifespan as the condition was not life threatening in any way - but, he would continue to experience developmental delays but it was too soon to know the extent or severity of those delays. Meanwhile, he would begin physical therapy right away for his spasticity. Also, the extent of the damage caused by the ventricle shift was unknown. Only time would tell. . . 

I was devastated! I couldn't stop crying. All my worst fears were becoming a reality. I grieved for my son. I grieved for all the missed opportunities. I knew he would never be President, go to college, or even play football. It was the death of all my parental hopes and dreams for my beautiful son! Now I was concerned with whether he would ever talk or walk. The dreams I had held for my children's futures were fast becoming nightmarish! But through the grief, I loved that child more than anything!

To this day, I still mourn the loss of his unlimited choice in possible futures. His choices are limited by his disabilities, but his right of choice is not completely obliterated by them. What is important is that he remains physically healthy and happy. So far, he has met both of those goals.

Later, as his list of medical specialists grew, we found more labels to add to his condition:
  
Complete ACC (confirmed by MRI at age 3)
Mild Occipital & Temporal Passive Ventriculomegaly
Spastic Diplegia (right side more pronounced)
Non-Verbal (receptive skills on target - expressive skills limited to few single words & signs)
Mild High Frequency Hearing Loss
Left Optic Nerve Hypoplasia
Axonal Peripheral Polyneuropathy
Global Developmental Delay
Low to Below Average Intelligence (60-70 range) *cannot test accurately due to verbalization issues.
ADHD (from age 3 - 7 yrs) *no longer labeled or treated with meds
Color Blind
Multiple allergies to foods, meds, and airborne particles (dust & pollens).

He requires: 
  
Physical, Occupational, & Speech Therapies
Ongoing serial casting treatments & AFO supports (legs)
Special Education
Bilateral Hearing Aids/FM System
Glasses (farsighted)
Augmentative Electronic Communication Devices
Air purification system to ease allergy related symptoms

Developmental Milestones

As you can see, Matt's developmental progress does not conform to expected norms. But hey, there is progress! :)

Support Head	7 Months
First Tooth	8 mo
Rolling	9 mo - rolled his way around the house
First Word	13 mo (cat)
Sit Up	15 mo
Table Food (finely chopped)	16 mo (finely chopped mixed with applesauce)  unable to chew foods for several years
Crawl	16 mo - dragging body with arms (soldier low crawl)
Walk	22 mo
Undress Self	36 months
Table Foods  (chunky)	6 years - Finally, we were able to get away from applesauce as Matt began to actively chew his food
Potty Trained	8 years
Dressing Self	Still working on that - buttons and snaps are a big problem
First Verbal Sentence	Still working on that - (at least 3 words used in sentence)

Behavioral / Physical Characteristics

12/3/91 (2 yrs 2½ mo)

Very loving and active child. Does not allow his physical problems to keep him from exploring his world. So excited when he first began walking (22 mo) that he could not stop giggling. Works very hard to achieve what he wants. Currently working on running. Loves to be with other children and adults, very sociable and outgoing. Always has a smile. Only recently has he begun to shy away from strangers but warms up quickly. Tends to play next to other children. Loves to chase and be chased. Favorite activity is placing objects into containers such as a bucket and then shaking the container to hear the objects rattle inside. Learns quickly if specifically shown how to use objects such as hairbrush or keys. Learns commands through repetition. Loves music, always wants to dance. Unable to chew, food must be cut very small and mixed with apple sauce or baby fruits to be mushy. Limited vocabulary but tries hard. Loves cats but scared of dogs. Hates to be confined in high chair or car seat, but after initial cry to let you know he does not like it, he will settle down. Sweet disposition. He will not sit still for long. Wants hugs and kisses often, but will not cuddle. He absolutely loves water. When he hears bathwater, he will come running and fall in deliberately just to play.

11/3/95 (6 yrs 1 mo)

Matt remains a very loving and active child. Despite his physical problems and his AFO braces on his legs, he manages to do just about anything as long as it doesn't require fine motor control. Loves to run, although, he has an awkward gait - which doesn't seem to hinder speed when motivated. Very sociable with other children and adults; however, he has demonstrated aggressive behavior which is attributed to his ADHD. Still not potty-trained. Does not recognize the urge to go until it's too late. He is significantly developmentally delayed with speech being the biggest obstacle. He has great receptive language skills but virtually no expressive verbal communication, which is very frustrating for him. Does use sign language mixed with his own gibberish. If he can't make you understand any other way, he will drag you to what he can show you. It is felt by his doctors and teachers that even though his testing scores are low, there is more to him that hasn't been able to be tested because of his communication problems. He is very visually oriented. Things seen are not forgotten, but abstract concepts are very difficult to understand. Changes in his life are hard for him to accept. Still loves music and will dance often. Chewing skills have improved, but food needs to be cut small as he would rather swallow without chewing and chokes easily. Loves all animals and will approach strange dogs now without fear (which scares his parents!) Loves to explore the world around him and will take off alone if not watched carefully. Always busy and never still. Wants hugs and kisses but will not cuddle. At this stage in his life, he finds a lot of the things he wants to do frustrating. When he is not physically able to manage or communicating his thoughts hamper him, he reacts by crying ... often. However, at heart he possesses a warm and happy disposition and can usually be coaxed out of bad moods with a hug and a tickle.

1/13/2000 ( 10 yrs 4 mo)

One of Matthew's strongest points has been his social skills. He loves people and really enjoys making new friends with either children or adults. However, due to his lack of communication abilities, his efforts are not often rewarded with meaningful relationships. His peers are at the age where few take the time to figure out what Matt wants to say - preferring to ignore him. He tries to gain attention by playful tagging (for a chase game) or taking a toy to make the other child respond to him. Both efforts are often met with angry outrage by the other child. Matt understands every word and is very adept at reading body language (since he uses it so much himself) and the deliberate refusal for other children to play with him adds to his level of frustration. He desperately wants a friend. He will at any opportunity leave the house to meet others. Whenever he gains the opportunity, leaving his parents to panic, he will just walk into neighbors homes to meet them.

Physically, Matt is small for his age and very slender. Even slim sized clothes long enough for his arms and legs tend to be baggy. His adult teeth have come in and are very crooked with a large overbite. (His baby teeth were perfect) Some teeth even overlap. Yet, the dentists - he's seen several - balk at any orthodontic work due to Matt's negative reactions to their exams. This dental problem exasperates the existing chewing issues. Matt's efforts at chewing is much better than before with deliberate attempts to chew and move the food around his mouth with his tongue. However, his chewing is not strong nor is the chewing complete before he swallows. If he didn't have such prominent front teeth, he could obtain much better mouth closure. He also has developed the habit of grinding his teeth while sleeping. Sleep issues also have become a concern. Matthew will not sleep continuously through the night. He wakes up often and, at times, has wandered the house. Usually, he looks for one of us to put him back to bed. He rarely needs to use the bathroom at night so that is not the reason for his wakefulness.  

Educationally, Matt is placed in a 'self-contained' special education classroom as he requires one-on-one instruction methods. He is only mainstreamed for Music & PE. Reading: Recognizes sight words. Writing: Severely hampered by his fine hand coordination. Math: Understands counting up to 3 - working on 5. Addition & subtraction are too abstract (even when used with concrete manipulatives) Calendar & time recognition is limited. He understands days when reminded. The concept of Months is too abstract. He understands the passage of time but not the actual numbered hours. Meaning, he will point to his watch to ask if its time for something and understands if he has to wait -- but cannot tell you what time it is. Color matching is difficult but easily overcome when each color is identified. He has a 50/50 chance (genetically) of being color blind as his maternal grandfather (with above average intelligence) also suffered the same problem.

Matthew thrives on activity! He enjoys horseback riding (therapeutic riding), swimming (learning to doggie-paddle & float), and limited bicycling (with training wheels) and skateboarding/scooter (with handles) - this is one activity he can do without vigilant monitoring but his movements are not very fast nor does he take any chances as 'normal' boys his age will do. He loves books and videos. - He does have one odd habit. He likes to hear/feel paper tear. Sometimes, when he is tired he will even tear up his books. Actually, his greatest passion are Disney & Barney video tapes. He watches them over and over. I do believe his attraction is the music. Very often he hums along to the music and actually he is able to keep the tune of the song. Matt is very adept at getting what he wants. He has great puzzle solving abilities. He will move chairs to reach high places and can eventually break into most latches designed to keep him out or in places.

3/25/2003 ( 13 yrs 6 mo)

There hasn't been a lot of change over the past couple of years. He still seeks friendship at every opportunity. He has developed a real gentlemen's way about him. He loves to charm the ladies by opening doors, helping with coats, and even bowing and kissing the hand. I think he saw this behavior on television - tried it and got such positive reactions - the charm stuck. He is also very sensitive to other's emotions and gets distressed and shows sympathy to another's pain. Often, when he sees someone in a wheelchair or wearing a splint or cast, he will go out of his way to express that sympathy and help in any way he can. He still communicates with single words, signs, and many gestures. However, he is learning augmentative means of communicating with an electronic communication board and succeeding well. Nevertheless, this method is still frustrating in its limitations.

Now that he has hit puberty, he has developed that gangly & lanky look most young teenage boys possess. The length of his arms and legs tend to get in his way while the size of his feet are material for good natured jokes. While his parents are proud to see their little boy physically growing at last. Yet, the fast-rate of growing are complicating the condition of spasticity in his lower extremities. The taller he grows, the more his legs tend to remain or worsen the bend at the knee. His crouch gait has become even more pronounced. Serial casting treatments are our last resort in hopes of stretching the ham strings. If this treatment, which worked so well in the past does not work now, the doctors are pushing for surgery to permanently release those ham strings. As parents, we have very mixed feelings about this permanent and irreversible procedure.

Matthew still loves any activity he can get. If he can go, he is willing - except when Mom has to shop. He finds that activity particularly boring. He has developed the bad habit of running off when he has an opportunity in a store. He always heads for the video section and picks out a movie. He then, comes back to me to ask for the video. What is amazing is his perfect sense of direction in the store - finding what he wants and returning to me. Nonetheless, his sudden disappearance panics me and he knows he is not supposed to run-off. When he does run off without permission, he certainly does not earn his video. This sense of direction also applies to the roads too. He always knows where he is and whether he is close to home. He will fuss if he is not ready to go home yet. As you have guessed, he still loves all of his video tapes. But, he has broadened his interests to include any fast-action non-cartoon movies. He really like the movie, "The Mummy" and its sequel. He has been begging for the Superman movie too. I think he likes the variety action movies offer, but Barney and Disney will reign for a long time yet.

Reflections

Obviously, Matthew has the 'Type I' form of ACC (as outlined on the What is ACC? page). He has no other disorders except the direct manifestations caused by ACC.  Does the Chicken Pox I suffered so early in pregnancy a direct cause for the ACC? On this, I cannot find a definitive answer from any medical personnel. The research shows only one type of toxic insult which has proven to cause ACC between the 12th and 22nd gestational age. I was only at 6 weeks gestation when I suffered Chicken Pox virus. Nevertheless, common sense tells me that I suffered a massive toxic insult to my body which disrupted the normal development of my child. After all, my body was fighting to stay alive - the high fever was enough to cause my body to shift its focus to surviving the onslaught rather than sustaining the young life inside me. To me, the two week difference in due date calculations prove that the baby literally stopped development during those two weeks I was so ill. (Just so happened, as a military wife - I knew the exact day I became pregnant - so calculating due dates was elementary). Naturally, if a fetus stops development for such a drastic reason, the probability of abnormal results in fetal development would be high. So yes, I believe that Chicken Pox caused the ACC for my son.

[* Note: As of March 2004, I was finally given a definitive answer from the National Organization of Disorders of the Corpus Callosum (NODCC). Chicken Pox, also termed: varicella-zoster virus, is known to cause Corpus Callosum disorders during the 5th to 16th week of pregnancy.] I guess I was right.

Another factor which does disturb me is the fact I was given Terbutaline for such an extended amount of time. This drug was later banned for use in Labor & Delivery for the management of pre-term labor due to its severe adverse reactions in mother and child and even causing maternal death. These reports have included transient hypokalemia, pulmonary edema, and hypoglycemia in the mother and neonatal child. (Physicians Desk Reference, 1997). It was odd, that the nurses noted Matt's very low sugar levels which they blamed on not receiving enough nutrition - I can't help but wonder if, perhaps, the medication still had an effect on him even after a week being off the medicine. That being the case, this medication might also explain the cause for his ventriculomegaly (ventricle enlargement) which the doctors also can't explain. -- But, this is only my own supposition and not based on any fact. Perhaps, someone will do research on this very thing - to prove or disprove the theory? But, then again, the virus which attacked us could very well be the culprit.

Do I feel anger at the initial doctor's lack of recognition of the virus and failure to take adequate measure to insure our complete hydration and provide stronger fever reducing medications rather than Tylenol? Yes, even after all these years I still wonder at the possibilities of what might have been - if only . . . But, its done! It won't do any good to constantly dwell on what might have been.

I do know that God does indeed answer prayers! He certainly did not cause or allow this bad thing to happen; it just happened. But, when I asked for his help. He provided. I understood He knew the future and I asked for the life of my child - but only if the quality of life for that child would be sufficient for the child's happiness and physical well being. I then gave both of us to his will. This act not only comforted me in knowing that God would provide whatever strength I would need - but that my child too would be okay despite any problems caused by the virus. Granted, I could have easily lost the child because the damage had been too great and my body's natural reaction would have been to abort. I would have grieved for the loss as any mother would, however, I had faith that if God let me lose that child - it would be for the best. -- I truly believe that God saved my child according to my own prayer. Matthew is very healthy medically. Yes, he does have multiple disabilities but they are certainly not as severe as they could have been nor do those disabilities prevent his happiness or compromise his overall health. Matthew has a whole lot of unconditional love & friendship to offer anyone who takes the time to really get to know him. I do feel blessed and love him just as much and my 'normal' child.

Do I still suffer grief & mourn the loss of my hopes and dreams for Matthew's future. Yes! As anyone knows who has grieved for the death of a loved one, grief and mourning is intense at first and slowly eases over time. However, that grief comes back at unexpected moments and can feel as strong as if the loss was still fresh. But, when that roller-coaster ride dips low, I just try to remember - the loss was of my own dreams and expectations. Matthew never had the same dreams. His life expectations are just a little smaller in scope - but no less important. Its time for me as a parent to let him invent his own dreams and support him in every way I can! His happiness and welfare is what matters. 

Do I fear for his future? Yes and No. Yes, parents of any child (disabled or not) worries over their children - especially when we are no longer able for whatever reason to directly care for them. It is especially hard for parents of children with special needs as those children remain more helpless or childlike than others. The world can be a very hard place - I can only have faith that God will provide for him since Matthew has already been given to his care. So, No! As long as I remember that faith - I am comforted and my fears are lessened.