A Look Backward

Just like other years during this time, I take some time out of my day/week to look back on the year and think about the direction of my life during the year. All in all, it has been a pretty good year for me. I have added another candle to my birthday cake, lost more hair and added number four son to our household of seven. All of that and I'm still not sure if I am any wiser although it would depend on who you ask.

One of my sons suggested this morning at breakfast that we go around the table and say 5 things that we remember most about the year. I was impressed that he came up with this so I was quick to oblige him. Well, you know kids, they don't always say what you think they will say but there was one thing that was unique to all four and that was the addition of John.

This is a very kid friendly household. We have always welcomed each new child into the family with open arms. We are also known for having our kids' friends over for parties and sleep-overs so welcoming John into the family was very easy for us especially since he is so lovable. But what was not so easy for us and continues to be a stumbling block for us (although the block is becoming smaller with each passing day) is the fact the he has Down syndrome.

Joy and I chose to go ahead with prenatal testing just so we could limit the
surprises at birth. Looking back, I don't think we would have chosen any different. This time afforded us to adjust ourselves to the fact that we may not be having the typical healthy little boy that we took for granted we would always have. This also gave us a time to discuss with our children the possibility of having a special needs child and what that would mean.

So when John came on July 29, 2008, we were all prepared - not really. We may have been prepared educationally but we were not prepared emotionally. When John came into the world, there was no crying and he was noticeably more floppy than our others. I can remember just feeling a little numb to what I was seeing for even though I saw all the results from every test that was conducted and saw every ultrasound that we had done (and we used ultrasound very generously), I still held out hope that my baby was not Down syndrome.

Well, speed up to where we are now which is the 5 month marker, I really am unable to see it any other way. I fall in love with that little boy each and every day. He makes me proud (and I might add that he makes me look good as a Therapist). He is all heart - we call him our relational baby because he loves to smile and cuddle. He has the ability to soften your heart and to cheer you up on bad days. Because even on a bad day for him, he still manages to flash you a smile.

Yes, this has been a difficult journey that I probably wouldn't have chosen for myself. I can tend to be a rather intense person as I probably was during the first 2or 3 months of his life as he is a very stimulated and therapied (if that is a word) baby. I have taken the responsibility of seeing that John receives the best start in life that I can give him. I used to worry about his future - what he could do, how would he make a living, what would happen to him after my wife and I were gone. But I am learning to take it one day at a time - to give him what I can for that day and hopefully that will help him to achieve more than what was expected.

If you have not seen the video clip entitled Dreams in Reality, I would urge you to see it. It will encourage your heart and hopefully open your eyes to the potential wrapped up inside our children.

My life has changed in so many ways and sometimes I wish I had my old life back but I am learning to accept and to learn from my circumstance. My faith tells me that God is in control and that He understands and cares about my life. And that everything happens for a purpose and I believe that purpose is that we would come to see our imperfections and mortality; that we might come to understand that we need a Saviour to save us from our mortality.

Thank you all for visiting my blog this past year. I have enjoyed writing it and meeting new friends. If you have never commented or emailed me, I would invite you to do so as it encourages me to know that you are out there and that my thoughts are appreciated. Thanks again and we will see you next year. May God bless each and every one of your families.

Family Therapy

 

This has been a good week for John. John has loved the attention of his siblings this week. Whether they are playing Wii or a board game, they have enjoyed (for the most part) having John with them. This alone has been great therapy for John because it means he is either in the Bumbo chair or on his belly on the floor. It has been great for me also because they do a lot of changing and feeding him for me. So I have uploaded a couple of pictures of John participating in time with the family. We love him more every day.

John Made Some New Friends At Christmas

Christmas is always a good time at our house as there are many people to see and to refresh old relationships. This year was no different. After having an intimate family time of breakfast and gift exchanging at our house Wednesday morning, we loaded up and headed down to spend Christmas Eve with my parents and 4 siblings.

All of my siblings read my blog and knew about Johns' diagnosis when we were first told. And all of my siblings except my brother John have met him so it was a time that we both had looked forward to for a while. Earlier this year, he and his wife had their first baby girl who is one month older than John. We both looked forward to bringing these two together for the first time. It is always great fun at our house when the cousins get together.

The two newest of the cousins got along as well as a 6-month and 5-month old can get along and there were many opportunities for photos of the two of them together. It was good to see the two of them interact with each other. It was also good to see how loving and accepting everyone was to my John without the focus being on the fact that he has Down syndrome. Yes, there were times of swapping of information from our experience with John but that wasn't what defined him. What defined John was his warm personality and his plentiful smiles.

John didn't need me to explain his diagnosis to people in order for them to understand him. As a matter of fact, my explanation probably would have just gotten in the way. John did a great job of explaining his diagnosis himself. It was good to see them enjoy him for who he is - a personable and interactive baby boy. This is one of the great gifts of family - to accept and love you just the way you are. Thank you my extended family for this gift.

A Christmas Wish

I'd like to use this post to wish everyone of you and your families a heartfelt Merry Christmas from the Hill Family of Northwest Arkansas. May you be able to enjoy the peace and joy that this day holds. May you experience the love of family and friends. But may you especially know that you are loved unconditionally by the One who saw our need and gave His Son to become flesh and to die for us that we who believe in His name might live eternally.

Christmas time becomes so hectic and filled with lights, gifts, money and Santa that it is often times easy to miss the things that matter the most - our relationship with our Maker and with each other. I hope that you will be able to step off the treadmill of life and rid yourself of the stresses of the day, enjoy each other and be a peace with yourself and with each other.

The Hill Family of Northwest Arkansas

Weak Muscles and Compensatory Movements

Have you ever witnessed an adult with arthritic hips or knees that walk with a gimp, favors to one side or maybe walks in an unusual way? Do you understand why this occurs? It is because they are using accessory muscles in place of muscles that are normally used for that movement. Granted these people are compensating because of pain but the concept also applies to weak muscles. And this is a problem that children with Down syndrome face. While it is true that our kids will eventually learn to sit up, walk, run, etc., it is important that they learn to use the correct muscles for that particular exercise. You see, our bodies were made to operate efficiently whether it be to walk, run, ride a bicycle or whatever we do. For a child that has weakness of a particular muscle, he/she learns to perform the exercise using different muscles and therefore bypass having to use the weak ones.

While it is a temptation to allow the learned movements as wrong as they may be for the sake of meeting the milestone, we must resist doing this. While it is important to give praise for learning a new skill, it is also important to teach the correct pattern of the particular skill.

A few compensatory movements to watch for with children with Down syndrome are standing or walking with their feet and hips pointed toward the outside. This is called rotating the hips externally. Another compensatory movement is sitting with the lower back bowed outward. Having stiff knees is another way that these children compensate for weakness.

All of us as parents desire for our kids to meet milestones and are very happy when they are accomplished. But at the same time, we need to be aware of the correct way to move and the correct muscles that are used to produce that movement. This is where a trained Physical Therapist can help. They can assist the child in learning to use the correct muscle/s. After all, I think that we would all rather have our children learn to perform the movement in the correct way even if it takes longer vs. learning the movement incorrectly sooner. Learning to use the correct muscles for the exercise will benefit the child throughout life.

So I would encourage you to ask questions of your Therapist so that you can look for these movements during non-therapy times. One of the most difficult things to overcome is a child who has already built a habit of compensating.

Thoughts From A Stay-at-home Dad

Let me just begin by stating that I have a new found respect for all of you stay-at-home Moms out there. It can be physically, emotionally and psychologically challenging which we husbands sometimes do not understand much less give allowances for that. Well, I am learning about all of those things and I want to share them here as an encouragement to other stay-at-home Dads.

As with a lot of men, I have grown up with the ideology of the man being the bread-winner. This message is heard loudly in Christian communities yet is communicated in other areas of society. It is just presumed that the man has his career which consists of getting up every morning, going to work till 5:00 or 6:00 while the Mom takes care of driving the bus for the family. This thinking is confirmed to me when I pick my children up from school and see all of the Moms in line there. The movie Mr. Mom comes to mind although I am not so far removed from dropping off and picking up my kids from school that I have driven the wrong way in line. I have however, been guilty of dressing John inappropriately for the weather, left him in a dirty diaper longer than should have been or squirting snot back into his face with the bulb syringe. I have learned over the years of kids that mistakes are just the nature of the game.

The mistakes, the physical demands of being at home are not a problem for me. Heck, I think my wife will admit that I can clean a house better and faster than she (thank you Mom). But the emotional and psychological games that a stay-at-home Dad goes through is difficult at times, especially when he thinks he is not serving his family in the capacity he thinks he should.

Swapping daily activity at a paying job to the daily activity of changing diapers, feeding baby, doing housework, etc can be hard on the ego and difficult to navigate for us men but I am trying to resign myself to the fact that this is where I am needed at right now to best serve my family. I have read and believe that we men are looked upon to lead our home but being leader doesn't mean just being the bread-winner for the family. By being at home, I am better able to have a meaningful, influential role in the life of my kids not to mention being able to give John a head start in life that he probably would not get anywhere else.

Don't misunderstand, I very much enjoy having John to myself all day as there is a bond that is being created between us that will serve us both well in the future. But there are days where I miss being out there doing Physical Therapy and relating with people who can actually talk back in a language I understand not to mention making money.

I often remind myself that this is not my lot in life for the rest of my life, just my lot in life for right now. To all of you stay-at-home Dad's out there - more power to you. You have an opportunity with your kids that will have lasting benefits. May our experience help us to be more sensitive to our wives/other Mom's who do this daily and have done this longer than we have.

In light of this post, a post has been set up that asks for the opinions of men and women toward SAHD. Your vote and opinion is greatly appreciated. I must say that writing this post as has writing other posts has been a good outlet for me away from John for a while.

BTW, John had recovered from the mashed potatoes Dad fed him by around 12:00. It just made for a long evening. I will be staying with the single-ingredient foods from now on.

Caution!

Here we are at 10:00p.m. and we are all ready to go to bed, except John that is. He is wide awake with the belly rumbles. He has spit up on everyone that has held him and then spit up on the floor after my daughter put him down in order to clean herself from his spit-up which just grosses her out and she is ready to hand him off real fast.

This isn't John's typical night. He is usually in bed by now and sleeps until 6:00a.m.. But tonight, Dad messed things up by feeding his boy mashed potatoes for supper. Hey, before you tell me how smart that was, let me tell you that he was enjoying them very much. After tonight though, I think we will hold off on table food just a while longer.

So just a word to the wise - don't feed your baby table food at 4 1/2 months unless you want to wear it.

P.S. He is still smiling at me though.


Goodnight and thanks for reading.

Family

Each year, we put up a real tree for Christmas so we usually wait until a couple weeks before Christmas to put it up so it doesn't dry out so much. Well, last night we put up our tree and really had a great time of enjoying each other. I love my family and can't really imagine my life without them. I hope that you will be able to get off the treadmill of life long enough this Christmas to enjoy your family.

Thank you "Santa"

As we travel our individual paths of life set before us, we all have different experiences that mold and teach us. The goal of life often becomes confused with personal achievement and the hording of material possessions. But sometimes, there are little reminders that come our way that remind us of the importance of the relationships we have with one another. Yesterday that happened to our family.

I have often said and have maintained the belief that we are a blessed family. That blessing is not because of good income, a nice house, cars to drive, a nice school for the kids to attend, plenty of food to eat, etc. but because of the loving and supportive relationships we have with family and friends.

Yesterday, that love and support came in the form of Christmas packages on our front porch. When we got in yesterday from work and school, there were packages of gifts and homemade candies that someone left on our front porch that were individually wrapped. Each gift came with a tag that told who they were to but only said that they were all from "Santa". So Santa, if you read this blog - THANK YOU!!

May we all be reminded this Christmas of the importance of relationships in our lives. And the most important relationship being that God loved us so much that He gave His only Son to die for you and for me.

It's Been Awhile

It's been a while since I have posted and although I have missed posting and reading the blogs that I read, it has been a good break for me. There have been many changes with John that I can't get it all down on one post.

First, John continues to do well with his development. He was 12 lbs. 6.5 oz last week when we had him weighed. He has his 4 month appt. tomorrow with the Doctor (and no, we don't use Mom as our personal Doctor since she is a little less objective). So we will see what he has to say. Although Joy and I use a Physical Therapist and Doctor outside the family to see John, we still keep close tabs on his development by way of weekly weight checks and daily Physical Therapy.

Speaking of Physical Therapy, I am very pleased with John's progress. Things that we have been working on are gaining full neck extension, strengthening his shoulder and back muscles. Even though John is doing great at holding his head up and has been for about a month, it is still difficult for him to gain that last few degrees of full extension. To help him with this, we use the airplane.

The airplane is where I hold him horizontal in the air in front of my face and talk or sing to him. As he holds his head up to look at me while in this position, he fully extends his head while extending his arms and legs also. This not only builds muscle in the back of the neck but also builds muscle in his upper and lower back which will benefit him as he continues to learn to sit.



That's right, we are working on sitting so I bought him a Bumbo chair to help with this. This chair has been a great tool for him because it gives him just enough support that keeps him sitting in the chair but some independence to where he has to work to keep himself upright. We have found this chair to be especially helpful in comparison to other chairs because he can use the pommel to push himself upright. I understand that these are around $40.00 but I was able to get mine off Ebay for half the price.




Another thing that we have begun working on using a spoon to eat rice cereal. This is something that we actually started about 3 or 4 weeks ago with an empty spoon just to get him used to the feel of the spoon in his mouth. Now, we have introduced rice cereal on the spoon and it is actually going pretty well. The first week, he didn't act very interested much less knowing how to use his tongue. But now he is more interested and opens his mouth for the cereal.



Although I am feeling more and more like I am drowning in a sea of baby land and would like very much to get back to work, Joy and I remain committed to giving John the best start that we can give him. Right now, we both feel a little uneasiness about leaving him on a full-time basis. We have a few ladies that have kept him on occasion for us that are willing to keep him some for us so we are considering our options. To tell you the truth, John and I have developed such a bond, it is difficult to even think of leaving him. To see him light up when he sees me or hears my voice just really warms my heart.

With all of the progress that John is making, our hearts continue to be very thankful to Him for blessing our lives with such a healthy Down syndrome baby and for giving him the strength and motivation to keep working. Thanks for all of your prayers and concern for John. He is truly blessed with people who really love him both here in this house and friends and family. Thanks again for reading.