Monday, September 28, 2009

Hope


I was reading a blog this afternoon and came across this...


Hope By Barbra Gill


Often others seem to feel a special responsibility to puncture our hopes. They say things like "You know she will never learn to read," or "you need to accept that he doesn't know what is going on around him, " or "He's doing well now, but he will reach a plateau."


They would say we are in denial, that our dreams are "false hopes," from which we must be protected. God forbid anyone should go around entertaining false hopes! But, in a certain sense, what other kind of hope is there?


Hope is the thing that is willing to take a chance on the future. And who is audacious enough to say what the futurewill bring? Hope is the capacity to see something on the horizon that we are willing to move toward. If our hope gets us from today to tomorrow, and in that new day we are ready or able to deal with something we thought we couldn't' face, then hope has done it's job.


There is a worse thing than false hope. It is no hope at all.


I know I have felt discouraged because someone close to us has questioned our decision to adopt Malachi and even worse have questioned his possibilities. I remember back to when we told those closest to us that we were thinking about adopting a baby with Down syndrome we were actually told "he will be a mistake and a burden." That hurt more than you will even know, but Josh and I knew that person was wrong. We knew Malachi would be a blessing in our lives and in others close to us. We didn't know what to expect, we didn't know what kind of struggles he would have but we chose to have hope. Hope that no matter what happens he would be loved. Hope that he would crawl, walk and talk one day. Hope that people in our family would accept him for him and not based on his diagnosis of Down syndrome. We have hope that he will play sports and compete in the special Olympics, hope that he will be accepted in school, hope that he will learn to drive, hope that he will attend college and graduate, we have hope he will melt the coldest hearts and that along the way he will teach us all to have a little more hope. I recently heard someone giving a speech to a bunch of high school students about Down syndrome. She said "children with Down syndrome have one extra chromosome and that one extra chromosome is the only difference between those without DS and those with." She then put it into a percentage. Malachi is the same as you and I, only 1% of him is different (the extra chromosome), 99% of him is the same. I have hope that one day people will see Malachi for the 99% rather than the 1%. 




Home is where the heart is!

I am thankful. Thankful that I get to stay home and raise Malachi. Thankful that I am here when he wakes up in the morning and I am able to give him is morning hug, kiss and snuggles. I am thankful that I get to play with him after breakfast and show him new things. I get to see him laugh when we read a silly book. I get to see him repeat the signs I have taught him. I am tankful that I get to put him down for a nap and be there when he wakes up. I am thankful I get to hear all his noises. I am thankful I get to see him struggle through his therapies and also see his face when he finally succeeds. I am thankful I get to challenge him to go farther and help him when he needs it. I LOVE staying home with Malachi and I am so thankful I have a supportive husband who works very hard so that I can. I am thankful he will give up cable, new clothes and other "stuff " so that we can afford it. I am so very thankful that I get to spend my days with Malachi!!

Friday, September 25, 2009

A Mothers intuition

Let me start off this post by saying a mother intuition is ALWAYS best! Okay, now, take a trip back to July with me. More specifically, Malachi's last swallow study. If you recall, the results were not good. It showed that Malachi was aspirating honey thick liquids into his airway/lungs. Ugh. Our GI said "we need to get a g-tube put in right away." She even sent us to speak with the surgery scheduler that very same day. Josh and I were both in shock and decided that it would be bet if we took a day to let the idea of a g-tube digest. We didn't want to make a quick decision. We left the GI that day scared. At the same time all this was going on we were informed that our Speech therapist was leaving. I don't know about where you all live, but in Illinois it is almost impossible to get a speech therapist who will work with kids who have feeding issues. It took a call to our lawyer and the head education guy at our foster care agency to get us on the list (i was told the only way he would get to the top of the wait list was if Malachi had autism...! I know, i was shocked. I believe ANY child with a diagnosed medical complication should be put on the top of the list. Don't even get me started about that!) After about a month of fighting with our therapy provider, we were FINALLY go a speech therapist so to find out she was leaving was heart breaking. We were back to stage one. At that time Malachi was making huge gains with his eating the more we thought about it the more we began to worry about the steps back he would be taking with a g-tube. Especially because we had no speech therapist to work with him and teaching me how to strengthen those muscles. We were torn and didnt know what to do. We spoke with every single one of his Doctors and realized they didn't seem to think the g-tube was necessary this quick, there were other things they could do first. So much to the disappointment of Malachi's GI we decided not to go through with the g-tube. I worried that we had made the wrong decision and that Malachi would get really sick and it would be all my fault.
      Today, we FINALLY got to meet our new speech therapist. She is AMAZING! She told me she wanted to do another swallow study to see where Malachi was since she had not seen any of the precious 3 studies. She got us an appt. in x-ray about an hour later. I was scared poop less. I was thinking "what if he is still aspirating? Are they gonna wanna do the surgery right away? What would feeding time look like now? I wonder which hospital they are going to do it at?" I was being a negative nancy, but deep down I knew we had made the right decision, no matter what the test showed. I got to feed him thin, nectar and honey thick liquids. And he only aspirated once on thin liquid! Woo Hoo! So he is safe to drink nectar thick liquid and does not need a g-tube! I cried like a baby when she told me the good news. She also told me she wanted to do some v-stim on malachi neck muscles and that after 4 treatments his swallow muscles should be strong enough to swallow thin liquids with no aspirating!!!! Thrilled, I am!
   I'm ending this post saying  "a mothers intuition is always best!"

Wednesday, September 23, 2009

".....the only thing wrong with him?"

     Ugh. There is nothing I absolutely loathe more that ignorance, wait let me think, no NOTHING! In the past 24 hours I have been educating "the world" (actually only 3 people, but who is counting?) on what and what not to say regarding people with Down syndrome. So if you are reading this and you are close to us in anyway, please, please, PLEASE listen carefully. Malachi was born with an extra 21st chromosome thus the cause of his diagnosis, Trisomy 21. He WILL do everything you or I can do, he will just accomplish it in his own time. His face may look a little different, his speech may be delayed and he may take a little longer to understand things, but he is perfect in every way. He was made exactly the way God wanted him to be, and God never makes mistakes. Please never refer to something being wrong with Malachi, because nothing is. Truth be told, if you look at him and all you see is Down syndrome, then something is wrong with you. He is so much more than Trisomy 21. He is a lovable, funny and stubborn 1 year old, much like your children are or were. When talking about his diagnosis, please speak in people first language. For example, he is not a "downs boy", he is a boy with Down syndrome. He is a child before he is anything else. Now that you have been educated, you can no longer claim ignorance.

     Just had to get that off my chest quickly. Thanks for baring with me. Now for an update on Ryan. It doesn't look like things are working out in our favor. We will continue to pray for questions to be answered and that something will work out. We are praying for you little man, stay strong while God reveals his ultimate plan for you.

Broken heart

 

I recently came accross a blog entry containing this picture...



This is sweet little Ryan. After his mom gave birth to him they found out that he has Down syndrome. She, along with her husband and other child decided to put him up for adoption. Ryan is currently 2 months old and lives in NY. Please pray for this sweet little boy, he needs a family asap. Josh and I have e-mailed the agency his is currently with, as we are trying to see if this sweet baby is meant to be here with us. Unfortunately,  the next step is to get them a copy of our home study. Our agency wants to charge us $1500 to do a new home study. Unfortunately, we do not have that kind of money (my husband is a teacher and i stay home, money isnt exactly flowing in) . So please pray that doors be opened (to us or another family) we want Ryan to have his forever family!!!!

Sunday, September 20, 2009

Fruit

Now that summer time is coming to an end, my craving watermelon and pineapples are gone. No longer do I wish to snack on juicy red watermelon or sweet, fresh pineapples. My taste for fruit changes with the seasons and now that the leaves are starting to change color I am craving these succulent, seedy, sweet little balls of goodness...


Mmmmm.... Raspberries! We are fortunate enough to live within 5 mins of the most amazing apple orchard in all of Northern Illinois!! Not only does our apple orchard have acres upon acres of apples, a beautiful barn housing the most delicious dips, sauces and fudge you ever did taste, but they also have fields of raspberry bushes ready for picking!

 

There is nothing more fun that heading out to the field with my family and picking a pint of fresh raspberries and snacking on the ones that don't quit make it to the container. And the fact the the sun was shining made our adventure even better!

Friday, September 18, 2009

Thrilled, excited, over-joyed....

I just had to share some amazing news with you all. Malachi has his ASD/VSD and mirtial valve surgery back at the end of January. A few weeks after the repair the Cardiologist told us that there was still Atrio. leaking and tricuspid leakage. We were worried that another surgery would be required to seal up the last little holes. The Cardiologist had us coming in monthly for office visits and echo's to check the leakage. A few months ago we got the news that the holes were not affecting Malachi's pressures and that surgery would not be needed. We were thrilled, but still a little nervous about those little holes. This morning we made our way to our monthly appointment but the outcome was much different than expected. Dr. F held Malachi and listened to his heart. He looked up at me and said. The holes have closed!!!!! 100% gone, no more leaky heart! I was so excited and a wave of extreme joy washed over me. I want to cry. And then he got up, gave Malachi a high five and said "we will see you in 6 months!!!" Six months, I can hardly believe it! This is the first time since Malachi has been born that he doesn't have to see the cardiologist every month. I can't even begin to tell you how happy I am. After the appt. Malachi and I went to the park to celebrate!! I can't wait to share the amazing news with his surgery team on sunday!! God is amazing and I am in awe of His mercy!! Praise God for being the ultimate healer!

Wednesday, September 16, 2009

The long awaited picnic!

I was trying to wait until Friday to write this post, but I just cant wait a second longer. This Sunday we will be driving 2 hours to attend a picnic. This is not just any picnic but a picnic put on by the heart surgeons at Rush where Malachi had his heart surgery. We can not wait to see Dr. P (the AMAZING man who repaired Malachi's heart in only 3 hours when it was supposed to take between 5-7), Dr. H who cardio-verted Malachi's heart 4 times that day we almost lost him and all of our wonderful nurses (deb, jen, colleen, erica are just a few). We can't wait to show them how far Malachi has come and to thank them for fixing Malachi's heart giving him a chance to live life to the fullest. How do we really thank them? There are no words that will do justice and no gifts worthy enough. They took my 8lb baby boy into that operating room and closed his ASD/VSD and created an entire mitrial valve...simply amazing!
I absolutely can't wait to see them all and give them a big hug!! I think the best gift from us will be an embrace with Malachi, the child who would not be here today if it were not for them!!! I cant wait!!!

Monday, September 14, 2009

Is he walking yet?

I'm warning you now, this is going to be a venting post!! I've lost my cool and I NEED, no, I MUST, vent! And you my friends get to put up with me...venting! Here it goes....

Question:  why is it that when ever someone finds out that a child is 1 or older they always ask "is he/she walking yet?" As if that is some sort of clue as to how far, or not far behind they are. This NEVER used to frustrate me until I had a child, was is in fact over a year old and NOT walking. Now this question makes me blood boil! Perhaps it's not the question itself, but the reaction to the answer. We were somewhere and I over heard someone asking another person (who is VERY close to us) how old Malachi was and if he was walking. The response was "no, but he's crawling." (Which in our eyes is HUGE!!) The person who asked the question just said "oh." I overheard this and had to walk away. Hence the reason for this post. Why do we put so much importance on milestones? Is it really important that a child holds their head up at 3 months and rolls over at 4? (yes is get that we need to evaluate milestones to see if therapy is needed, I get it) Isn't it was more important that the child is happy, well adjusted and has a good personality? Or that they are trying their hardest to accomplish crawling? Does it really matter if they are walking by 1 or is it more important that they have the determination to keep trying? I will be brave enough to say that Malachi is  still drinking form a bottle, he isn't interested in baby food, he has a severe gag reflex's that prohibits him from feeding himself, he can't put things into containers and he cant walk. But Malachi can smile, laugh and hug. I will choose to measure his success by his personality, his determination and his ability to put a smile on anyones face. Malachi is doing something more important  than walking, he is changing the world one smile at a time And that is so much more important.

Thursday, September 10, 2009

My little reader

Lately Malachi has been obsessed with books. He will sit with me and read for hours and then throw a fit when i say books are all done. To encourage his to look at them on his own (I cant read to him all day!) we've gotten a few to keep with all his toys. These 3 books have become his FAVORITE! They have huge, simple and colorful pictures and at the end they play a sound and have some lights. The pages are cardboard which allows Malachi to turn the pages himself! I HIGHLY recommend these books and have found them used on Amazon for under $5 each.







Tuesday, September 8, 2009

Labor Day

Josh, Malachi and I had a CRAZY busy weekend. Sat. we moved my brother into a new apt. in Chicago and that night we had a BBQ. Sunday we headed out to visit Joshes grandma and great aunts. We had a wonderful visit and came home late sunday night. On monday we took Malachi to the apple orchard where he had his first pony ride. We were busy but we had a blast!

Here is a link t malachi's crawling video. He is getting better and better. We are so proud!
Malachi Crawling

Monday, September 7, 2009

Officially, Officially

Malachi is officially crawling on his hands and knees! He started a few days ago, but couldn't get far. He went across the living room today which is pretty big. I cried. Yep I am a loser, but we have been working on this for soooo long and just the other day his PT said that she thought he was gonna skip right over crawling and move to walking. Boy was she wrong!

Just a quick post tonight before bed. I will post about our laborfull weekend tomorrow!!

Thursday, September 3, 2009

The case of the no no's

Let me start off this post by stating that hell has officially frozen over!! Wondering why? Let me tell you that we residents of Illinois have experienced a straight 4 days of sunshine!! Tell me more, you say...Alright I will share with you the best news yet...It looks like we will have 4 more days of sun!!! Hell has frozen over and now pigs are flying!!!
Okay no to the entire reason of this post. My wonderful little pistol, I mean sweetheart has learned the meaning of no! Lord help me now. He may not be able to verbally say it but he sure can shake his head.All day yesterday I was asking him yes or no questions. Do you want a diaper change? No. Do you want to read a book? No. How about a bath? No. As the, mom knowing what best for my child, I proceeded to do all these things regardless and them had to deal with the full on temper tantrum for making him do something he didn't want to. I asked him later that night if he wanted a bottle he replied with a vigorous head shake no. I said to my husband, he doesn't know what he talking about and proceeded to make him a bottle. Imagine how surprised I was when he wanted nothing to do with the bottle. How can there be so much attitude in this cute little face?
I think I can officially say Malachi knows what no means. And I can officially say we are in trouble, I can only imagine what he will be like as a hormonal teenager. I will start taking donations of alcohol and cigarettes now, because im gonna need them! (But i dont drink, often, and I def. dont smoke, im just kidding people!!)
One more quick thing before I leave you all to enjoy you Thursday. We are getting a team together to walk in the Buddy Walk. I will be putting a link to our team page on the right side. Please consider donating to this wonderful cause. All donations will go to helping our loved ones with a little something extra.Please, Please PLEASE, I'm begging you (and i normally don't beg) make a donation!!
Who can say no to this??

Wednesday, September 2, 2009

An unexpected adventure

When Josh and I began the process to become foster parents we never expected the adventure we would wind up on. This journey through adoption has been an unexpected adventure but one I wouldn't change for anything. This past weekend we took another adventure out to the wilderness of Wisconsin for our first family camping trip. I was expecting sunny skies and semi cool nights. What we got was completely opposite. The first night we experienced a thunderstorm which brought down part of our tent. We hide in the comfort of my brother in laws camper while Josh went to investigate the damage. What he found was puddles of water and wet blankets. Defiantly unexpected. We left Malachi with my sister in law while we ran to target to get towels, new blankets and some clothing for me since my bag got wet. We dried things to the best of our ability and went to bed. (Malachi's things stayed nice and dry, they were in his pack and play 4 inches of the ground.) The next morning we awoke to cloudy skies and VERY cold temps. It proceeded to sprinkle/mist the rest of the day. Ugh. When we left on sunday the skies were bright and the sun was shining. All in all our unexpected camping adventure turned out great. We had fun even though it would have been very easy not to. We are looking forward to our next camping adventure with a new tent.