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Text of the page (random words):
bout sharing the ups and downs of our lives and i share triumphs and struggles pretty equally but i must say that every single day i thank god for my son i thank god that he made him the way he is and still the battle continues it s difficult some days knowing that because your son has one extra chromosome he has certain medical problems that because of one extra chromosome people look and treat him differently that because of one extra chromosome he will most likely develop alzheimer s in his 30s there are many things about down syndrome that are hard and then there are things that are huge huge blessings and the mix of the 2 makes our life unique and precious and teach me levels of love that i didn t know existed over the past few weeks jack has had some trouble breathing at night he wakes up gasping for air we dart into his room and hold him daniel and i both are shocked to our core and immediately hold on to him and bring him to bed with us putting him back to bed is not easy the monitors are up as loud as they go and those nights we barely sleep i looked at d last week during one of these episodes and said this is one of those moments when i hate down syndrome that was true i knew that one extra chromosome caused smaller airways an enlargened tongue touching tonsils etc and even still in those moments we will go to dr and see what we can do to help jack breathe easier ie surgery in a few weeks i still wouldn t change my son i believe that god made him the way he is without flaw and purposely and i believe that in the midst of the hardness and struggles that having ds brings there is purpose purpose revealed we teach jack signs he signs a lot he babbles and can say some words for example he signs please and makes the ss sound when he says it pretty cute he signs and says dada clear as day my heart melts each time so grateful he and daniel love eachother so well he signs and says doggie he makes the p sound for play i could go on and on he is trying to communicate and he does communicate i am still waiting on momma i get it a couple times a week sometimes every other week and when he says it i could cry each time not sure why i am being made to wait for it but i am so i will wait we started teaching him to sign i love you with one hand a week or 2 ago he signs it with his index and middle finger up giving the peace sign quite appropriate for i love you i think it s the cutest thing we say i love you jack and he signs back with his hand i love you most 2 5 year olds can say i love you micah says i love you to daniel i wanted to communicate this to jack and him to be able to communicate it back over the past few days he has been trying to say it he says woo woo with his mouth practically closed as he signs it it is the sweetest thing ever we both smile and laugh when he says it cause it s so cute he has the sweetest voice and disposition and seeing and hearing him say those words makes me melt yesterday after getting home from work we sat at the table to eat dinner after me trying to get him to walk just me and jack we have been working on walking for a while and daniel and i are both ready and eager for that day ok back to the i love you and momma we were eating and working on different words and i was telling him that we had to work on walking he was being silly listening to me babbling on he said momma a few times and kept trying to say i love you i wouldn t trade that moment for anything in the world not even a clear i love you woo woo is perfect he has said it a few times but the timing during dinner was perfect i hugged him and thanked god that i have such a sweet boy i keep thinking about it today i keep thinking wondering if he knows what he is trying to say i hope we are showing him a good example of i love you i m so thankful for my baby boy i m so grateful our life is slower i am on his pace now and when typical kids are around i feel so rushed cause i am so used to slowing things down for jack i love our life i love my son and the ebb and flow of the struggle with ds will continue i ll curse and be mad and then god will remind me of the incredible journey i am on and the blessed life i get to be a part of so grateful my cup overflows over and over again with love for him i can t imagine him any different nor would i want to and so grateful daniel is willing to slow down with us jack has taught me so much he has taught me that the things many people hold dear myself included aren t dear at all it doesn t matter if you walk or talk 1st it doesn t matter if you are the cleanest eater in the world or if you know how to play appropriately with a toy as soon as you see it love is the most important smiles laughs enjoyment of those you love jack loves 1st he s not bound by what people think of him or what he should or shouldn t be doing he want to laugh cuddle enjoy he doesn t care if he gets food all over him when he eats or if his splashes in the tub get someone wet and i don t care either i bring extra clothes cause i know he ll make a mess and when he s in the tub i let him play and worry about the mess later i let him go down the slide face 1st cause that s the easiest way for him and casue it s not hurting him or anyone else i let him do that even if other parents tell their kids no why should i make going down the slide work for him or hard on him when it s play time why is there an appropriate way to play some things are just more important i feel like he knew that communicating i love you was way more important than walking which is what he have been working on for months and once again my son has taught me a valuable lesson and a deeper meaning of love and once again reminded me that yes the medical stuff is hard but the love overrides all of that and that sometimes the balance between work learning to walk needs to wed with more love and more enjoyment and more patience so we continue on our journey posted by b mckenzie 2 comments monday october 17 2011 i only write once a month really now life is too busy to write more and my free time would rather be spent with the most wonderful man and boys in the world jack is doing pretty well we are still working on the amount of food to give him and when to stop this is really hard for parents of typical kids i assume you know when your children are full cause they tell you or same thing when they are hungry but with jack he can t communicate and honestly i am not sure he knows i am convinced he thinks he is hungry all the time we try not to eat unless he is eating and space out his portions so they last as long as we the time we are eating but my heart breaks when he wants more and signs more please and i have to say no cause i know he s had enough and then he starts crying so very hard walking we are getting closer if he could keep his upper body from propelling forward then i think he would be walking it s basically the balance at this point that is holding him back so we keep trying each day soon soon he will be walking and i will be missing seeing that precious bear crawl talking we are teaching new signs each week this week we are working on help and soup i choose signs based on what he needs to communicate so to me teaching colors right now aren t as important as him telling us he needs help and soup came from the fact that i made a huge pot of chili yesterday that we will be eating on all week so he needs to know what soup is there is no sign for chili that i have found jack still says words and tries to imitate just about anything you say i love his sweet voice my heart melts every time he says something we have taught him the sign i love you and it s absolutely precious the 1st bit of chilly weather has come through brining congestion and a couple sleepless nights i am pretty sure he might have sleep apnea and am hoping to get him tested soon he wakes up at night wheezing cause he can t catch his breath it s the scariest thing in the world we are trying a humidifier which is what i have used in the past but it still seems worse than it s been in the past i am terrified we won t hear him one night and he doesn t know how to help himself at this point i know it s a mixture of tiny air passages congestion and enlargened tongue friday night when we brought him in bed daniel was holding him after an episode and i said there are moments when i hate down syndrome it s the medical part of it that sucks when you know that if his tongue wasn t bigger he wouldn t try to swallow it if his airways were larger he wouldn t stay congested and you know those 2 things are because of a freakin extra chromosome those moments are hard and i try to remember that it could be so much worse but when your child is having a hard time breathing it s hard to be rational which brings me to another point the wonderful man dad and help daniel is i ve never had anyone wake up with me when jack is sick or having a hard time breathing etc daniel has been incredible he loves jack he loves jack i can t tell you how incredibly happy this makes me i love that he accepts jack as he is pushes him to do things and at the same times understands that some things are going to take longer i love that he plays with him wants to cuddle with him and talks with me about ways we can help him i love that he isn t embarrassed of him and doesn t make excuses i love that he doesn t baby him but also knows when he needs a break i have never had this jack has never had this i wish i could put into words how wonderful he has been but i can t i feel like he should have been jack s dad all along and i love him so much i feel so blessed i am so glad micah and jack have daniel in their lives what a blessing for them and i am so happy i get to watch them get to experience the love of a dad in action so amazing we get micah this friday and i can t wait i love to see him and jack play and i love to see daniel with both of them it s nice to be so happy and content very grateful here are some pics from this past weekend d and jack having some pancakes sunday morning such piggies jack sporting his cardinals hat go cards i can t be we are world series bound wahoo jack with the neighbors mattie amber and jamie love the neighbors around us all of them have been so wonderful and jack has so many ladies to choose from d being silly with jack have a great week posted by b mckenzie 5 comments wednesday september 28 2011 an update finally september 28 2011 i can t believe it s been a month since i have updated this blog i assure all of you we are doing just fine thank you for your facebook messages and emails checking in the wifi at the new house isn t that great so it s hard for me to get online and there is only so much i can do on my iphone this will be a lengthy post since it has been so long since i have written anything so here goes we left st louis labor day weekend to begin our new lives in pa bittersweet doesn t even begin to describe the emotions surrounding our departure in the week that we left we said good bye to therapists co workers and friends friends that have become family and a familiar life and city girls from work greatest cras in the world love and miss all of you jack s therapists an emotional night last girls night at chava s jack and uncle chad and jack and his beloved lo lo leaving her was the hardest part of our move by far i never thought i would be a city girl but i must admit the conveniences of a large city were nice i miss the city and the people very much i would give anything to sit on the couch with lo and chad or walk around west county mall or go get some froyo pa is quite different it s gorgeous for one st louis is all city not much landscape so being in a city filled with green mountains fields smaller buildings is quite nice and reminds me of home tn jack has adjusted well to the new atmosphere he has grown to love the dogs and when we are in the car he just stares out the window i think he is completely taken by the cows and corn fields and lack of pollution lol def pros and cons to every place he is at a daycare during the day and so far seems to really enjoy it of course i call non stop to check in on him but he seems to be happy so that s really all that matters living life with someone again is odd and good at the same time it s weird but i feel like we should have been doing this all along we daniel micah me and jack are a little family when micah isn t around and is with his mom it feels like something is missing and when he is around the puzzle is complete the boys are a riot and i give props to you moms out there with multiple kiddos we are exhausted after a weekend with 2 two year olds painting complete mess and learning how to discipline and love them equally is not always easy well loving them equally is but the disciplining is hard and something d and i are learning to navigate and while it s so nice for jack to have a brother and someone to teach him things it s hard it s hard because micah talks and walks and says daddy and i love you and my tummy hurts jack communicates but it is very basic more all done hi bye eat drink food banana ball play please thank you chicken candy cookie cracker fruit wash etc these are the words signs that are used most frequently he uses to communicate so when i hear sweet little micah s voice tell daniel that he loves him a war goes on in my soul i am completely mush at hearing how much he loves his daddy and how much his daddy loves him and i am jealous as well i know jack loves me but i can t wait to hear the words i can t wait to hear mommy all the time i find myself longing and yearning more than ever when micah is around not yearning for jack to be different but yearning for the day when he and i can communicate with jack like daniel and micah do i know it will come but being hit with it right now for the 1st time really it s hard lots of tears and prayers i met with a new pt last night and she was great i think she will do a wonderful job and i think jack will love her i meet with a special instructor speech therapist next week so we will see how that goes so much newness and change i miss my girlfriends i really really miss my girlfriends i miss going to jamie and eric s and talking on their floor while the kids tear up the place i hope and pray for friends like them and so many others here in easton and i thank god every single day for bringing me through this past year do you realize that a year ago right now sept 2010 i was barely holding on i was relying on my friends for their hearts to give cause mine was completely broken my life had shattered in a million pieces and i wondered if i would ever be happy or content if we would ever find love if i would be on this journey alone and look what god has done he has truly binded up my broken heart i feel like i should write a book i wish i had words to express my gratitude to all of you who held my hand played with my son hugged my neck over this past year my cup overflows over ...