Jacob's Travels to Atlanta, Georgia September 10-15

Hi everyone! I'm very excited to share this blog post with you! Roman is my very first guest blogger and he would like to share a special friend with you- Jacob the Bear.

If you are new to Living a Special Kind of Life then let me fill you in on a couple things pertaining to this post.

1) When Roman was about 2 years old he was diagnosed with a genetic condition called 22q11.2 deletion. Its a partial deletion of the 22nd chromosome, and though his is on the "mild side" it certainly still has its challenges. 

You can read more about condition here: Dempster Family Foundation: What Is 22q? 

2) When I moved to Atlanta I started the web based support group to help me find other kids or adults with the condition. The response was wonderful and we have made life long friends through it. 

You can help spread awareness by "Liking" our Facebook fan page here: 22q Atlanta Support Group 

3) Through a mutual friend in the group I learned about a bear named Jacob. Jacob is not just any stuffed bear- he's a traveling, 22q awareness spreading BEAR! He carries a journal filled with entries from children all over the country who have the deletion. His box is filled with hand made gifts and souvenirs from the places he has been- but the story of how Jacob was started was the REAL treasure:   

(From the Jacob's Travels Group)
Summer of 2013:
My Daughter, Kyli, took the then "no named bear" to Dragonfly Forest Camp. When she returned home we discovered the bear was missing. The bear had somehow sneaked into the bag of a fellow camper and made it home with her! Kyli's friend kindly mailed the bear back to her in a box with a note. The excitement I saw on Kyli's face was so awesome! This is how the idea for Jacob's Travels 22Q was started.
Kyli asked me to message Becky Kane, a fellow parent of a child with 22q deletion and ask her a very important question. Her son had passed away from complications from the chromosomal deletion and Kyli wanted to name the soon traveling bear in his honor: Jacob. She was honored.
Jacob Kanes Mom, Becky, was the first person Jacob the Bear visited. Becky wrote the first entry in Jacob's journal and added the Special Olympics medal her son Jacob had won and was so very proud of.

During this time Kyli was having difficulties making friends. Kids can be so cruel sometimes. One of the best things we have ever done for her was sending her to Drangonfly Forest Camp. To be with kids just like her and to know she wasn't alone..... made all the difference in the world! Life is so much more fun with friends!

So now we have learned that Jacob is on his way to visit Atlanta, Georgia! I shared the post from the other places Jacob had been with Roman to help him better understand. Initially Roman was just pumped to receive a package in the mail. That's HUGE for a 7 year old!

Wednesday, September 10th: Jacob Arrives & His First Outing

Roman: I went to speech with Jacob. Then I went home and played with Jacob. He slept in my room. He's nice.
Mommy: Jacob arrived safely on a Wednesday afternoon. I opened the front door to head out to pick up the boys from school and head speech therapy. Me and his sisters were very happy to see a big brown box waiting on our door step. It was Jacob! I put the box in the front seat of the car and off we went.
While Romans brother was taking his turn in therapy we opened up the box. Inside was Jacob, dressed in his red vest, and a large binder filled with precious accounts of all the places Jacob had been. Roman immediately snatched up Jacob and their special friendship began.
That evening we took Jacob to our church for children's choir practice. I could see this boost in confidence when Roman carried him. He carried him PROUDLY! It was obvious Jacob made him feel VERY special.
That night Jacob enjoyed some bedtime stories and being tucked in with Roman all night.

Thursday, September 11th: Jacob's First Day in the 2nd Grade

Roman: I went to school with Jacob. I read to him. He played at school. We didn't take him outside though, he might get all dirty.
Mommy: I had emailed Roman's teacher the night before to let her know who Jacob was and why he was coming to school with Roman for the next couple of days. She was thrilled. For the next 2 days Jacob was aloud to stay side by side with Roman throughout the school day. During free time Roman and his classmates looked through the journal. His teacher said the class was learning how to read maps, so she had them try to locate all the places Jacob had been on their map. I loved that!
That evening Jacob waited patiently as Roman worked on his homework. For his reading work we decided to read more in Jacob's journal.
I was delighted to see Jacob had traveled to Ohio a few times, When Roman was first diagnosed we were living in Cleveland and I had trouble finding other kids with the condition. Apparently Jacob didn't!
Roman: Jacob is wearing a hat, its an Ohio hat.

Friday, September 12: Jacob's Last Day in 2nd Grade

Roman: That's Jacobs medal. It looks brand new, its from the Special Olympics.
Mommy: Jacob returned to school with Roman and his classmates said goodbye to their new furry friend. And now it was the weekend! Roman was absolutely fascinated by Jacobs Special Olympics medal. When Jacob wasn't wearing it, Roman was. We ran a few errands that night and Jacob came along.
For the most part Roman was great at keeping after Jacob, but it did help Roman learn some responsibility. When he thought he misplaced Jacob, he would panic. So we talked about being more careful with the things we care about. Jacob was a great teaching tool in more ways then one!

Saturday, September 13: Jacob Hangs Out with Roman

Roman: Jacob loves trains like me. We are playing trains.
Mommy: I had to work an extra long day, so Jacob and Roman spent most of the day at home with Roman's Daddy and siblings. Noah, Lydia and Sophia loved Jacob a lot too but struggled to understand why he came just for Roman. I'm pretty sure Roman enjoyed their jealousy!
Roman certainly enjoyed dressing Jacob in the different outfits that came with him. Jacob wearing his train hat was only appropriate as they played with some of Romans favorite toys.

Sunday, September 14: Jacob Goes to Sunday Morning Service

Roman: Jacob went to church with me. He's wearing an Ohio shirt. I'm wearing an Atlanta shirt. He sat in his own seat.
Mommy: It was our last full day with Jacob and I could tell Roman was having a hard time understanding that. I encouraged him to simply enjoy the day and not stress out about Jacob being mailed to the next kiddo.
That morning we went to church and Jacob attended Seekerville Children's Church with Roman. Roman was able to introduce him to some more friends as well as his Teachers.
That night we typed a letter to Kyli, the girl who owned Jacob, and placed it in the notebook. Roman was still struggling with knowing Jacob was going to the post office in the morning. I just kept telling him how important it was for Jacob to go the next kiddo so he could make them feel special too. And reassuring him that Jacob would return again.

Monday, September 15: Jacob Says Goodbye & Is Mailed to Michigan
Roman: When is Jacob coming back?
Mommy: That morning before Roman got on the bus he said goodbye. Roman took it better than I expected, but when he came home from school he instantly asked me where Jacob was! We tracked Jacob online and kept checking his Facebook page for his safe arrival in Michigan.
We can't wait to see Jacob again and be apart of his travels! We feel honored to be apart of his journey, to help keep another child's memory alive, and help a little girl meet new friends just like her! Not to mention the numerous people and kids that were able to learn more about 22q because of Jacob being such a great conversation starter! See you soon and safe travels Jacob!

I dedicate this post to Jacob Kane and all those who love him. 

...for the kingdom of heaven belongs to such as these...

Summer Wrap Up & 2nd Grade!

School is back in session! I thought I would post a quick update about whats new in Ro-Ro's world in honor of completing 1st grade and surviving a summer with a frazzled Mom!

We kicked off summer vacation with our annual trip to 22q At The Zoo here in Atlanta. Sadly, the weather did not cooperate and it made for some rather challenging conditions. I don't think Roman cared though. :)

Roman had been doing private Occupational therapy as well as Physical therapy since He was about 18 months old till the beginning of this summer, when he met all his goals and was done! It was a big deal for both of us! 2 less appointments per week is awesome! What a hard worker Roman is! Muscle tone, shmushle tone! I wanted him to still participate in some type of activity that involved motor skills and muscle development so karate it was. A ninja with low muscle tone? Puh-leez.

We celebrated our Birthdays with a FREE trip to the Georgia Aquarium! You get in free on your birthday, so imagine the tellers surprise when I handed him mine and Ro's birth certificate. :)

We also went to Vacation Bible School for the first time this summer! Him, Noah and Lydia got to spend a week going "wild" for God! And if it was up to him VBS would last all summer long :)

We got several (ok, a lot of) doctor appointments out of the way this summer. Much of which we don't have to return to for 2 YEARS. Praise God! Do you see a trend here? :) I agree :)

We developed a new found love (some would call it obsession) for legos this summer. I have gone this long with out any interest... darn you, Lego movie. I spent my summer surrounded by legos of all shapes and sizes. I can tell you each one hurts in its own unique way when you step on them... 

We also tried some bowling for the first time this summer! Now THAT was fun! Watching my kids try to bowl was the funniest, sweetest thing! Roman is pretty good!

There was lots of swimming, park playing, staying at Grandma and Grandpas house and visits with cousins this summer. Over all, I think summer was a great success! :)

First grade was a good year. He has officially left the SDD classroom (Significantly Developmentally Delayed)(way harsh label by the way) and is now in a Language based classroom (forgive me, I haven't memorized the new acronym in my ever abbreviated language). But with a new program comes a brand new school, some new friends (we were happy to have 3 old classmates with us this year!) and new teachers and therapists. Today he came home excited and eager for school tomorrow. We will see how long that lasts.... LOL.... he does like school, but does not like waking up in the mornings!

So here's to 2nd grade! My Ro just keeps chugging along, proving them all wrong. Love you Sweet Boy. <3

Romans 8:37
But in all these things we overwhelmingly conquer through Him who loved us.

:Healing:

I should first say that I intended to post this on the 22nd, for "ask my about 22q" day. But I had a hard time finishing, and kept having to come back. Tonight I was able to finish this post, and with the permission of all people mentioned, I'm sharing something very near and dear to my heart.

"AS THE HEAVENS ARE HIGHER THAN THE EARTH, SO ARE MY WAYS HIGHER THAN YOUR WAYS AND MY THOUGHTS THAN YOUR THOUGHTS." ISAIAH 55:9

Last September Roman had a procedure to repair his sub mucous cleft. It was causing many issues, like aspiration and air escaping through his nose when he would talk, so we were excited to have this finally done. During the surgery the Surgeon decided to also to take out the old set of ear tubes, clean out his teeny tiny canals, and put new tubes in. She informed us, however, that when she went into the ear to do this that she found a large mass behind the drum. She suspected it was a toma, and it had developed from the numerous ear surgeries he had already had. We became even more worried when she said how close it was to the nerve that controls that side of his facial movements, and also that it was weaving between the bones of the inner ear, which removal could cause significant damage and hearing loss.

Roman healed up from his procedure and soon we were facing another one. We first had a CT scan to confirm what exactly it was, and wasn't-  like a tumor, thank God. But it was in fact there, it was large, it needed to come out and it was going to take a very delicate hand to do so. We were grateful that this was found "by accident." Had she not decided to go ahead and put in new tubes, who knows how long till it would've been found. Maybe by then it would've been too late. Our doctor convinced me that it was ok to try to get through the winter's cold season and then schedule the surgery.

That February started a pretty hefty round of doctor appointments for Roman. Follow ups, scans, clearance and so on, to get this show on the road. As we would come and go at our local Children's Hospital, we would try to meet with a friend of ours, Marti, who, unfortunately, was experiencing some extended stays in the same hospital with her son, Lake. Both our boys had a condition called 22q11.2 deletion. While the effects of it on our boys were very different, the kids themselves had a lot of similarities. When I first moved to Georgia and started a face book support group, she was one of the first persons to reach out to me. We instantly hit it off when we found out we were both from Northern Ohio! What are the odds? Soon we met for coffee and had a several hour long talk, and that followed with face book messaging, and then texts. What started as talking about our children's conditions soon turned into conversations about faith, family, God, the "why's" and "why me's" and lots of back and forth encouragement. Me and Roman were able to met up with them after Romans pre-op appt. We walked around the hospital, we prayed for her marriage, for he strength, for her son. Even in the midst of some uncertain and scary times, she encouraged me and spoke life over my situation.

A couple weeks later it was time for Roman's procedure. I was told the plan was to make and incision in the ear drum and then make a skin graft to patch it OR make an incision behind the actual ear and work from there. Both had their risks, and both required a 48 hour stay in the hospital afterwards. As a way to comfort us the surgeon let us know there would be a sensor placed on the nerve that controls facial paralysis, and every time they would come near it an alarm would sound. However, this really did not make me feel better.  She let us know there was a chance of non-permanent facial paralysis that would eventually come back after some therapy. I was starting to slightly panic. She ensured me that she was going to take her time as she unwound the mass around his tiny bones in his ear. We were nervous, but had faith everything was going to be ok. We had prayed that the surgery would go smoothly, that the spirit of the Lord would fill the room, and his hands guide the surgeons. We believed in complete healing through the work of this surgery. We believed we had already received a miracle by the Doctor "mistakenly" finding this mass. They took him back, me and my husband held hands... this was now the 5th time we had handed over our oldest, littlest boy into the hands of mere human beings, practicing medicine, behind closed double doors, without us there.

Upstairs there was another Husband and wife hold tightly to each other. There son was in the cardiac intensive care unit, as doctors scratched their heads about what to do next. From room to room in the Children's Hospital I picture many families locking hands and waiting for their miracle. Some maybe not even sure what to believe, or who to believe in, but I can tell you this, when your child is sick, and you are facing the scariest of situations, you will want to believe in something. I think of the angels among us, walking halls, and standing over babies. Administering protection and sometimes taking children home...

45 minutes later my Husband and I were sitting in the waiting room, poking around at our food, making that small talk we were getting used to making. I thought about Marti, I thought about the other little girl in the support group who was also having a procedure done that day. I tried not to think about a knife on my child's skin. I tried not to think about the risks. I tried not to think about all the Ct scans he would need in the future to make sure the mass doesn't return. Just poking at my food, talking about what a nice day it was....

The front desk notified me that the surgeon was coming out to speak with us. I wasnt sure why, but I thought maybe she was there to tell me which way she decided to operate prior to actually doing it. I watched her come through the double doors, pull her face mask down, her eyes big saucers, throw her hands in the air and LOUDLY exclaiming "TOMA? WHAT TOMA?!"

I think both our mouths hit the floor. I didn't understand. I asked her what she meant, and she just kept rambling about how the body doesn't heal itself of these things, and that, and I quote "ya'll must be livin' right, cause this just does not happen." We didn't say anything. We were just stunned. She said he was coming out soon, she just put some T-tubes in, and he can go home shortly. We were there but a couple hours. I just couldn't believe it. We both acted like we didn't know what to do. We had made so many arrangements for work and babysitting and over night stays but now we were going home!

I hurried back to the post op room and waited for him to roll on in. I sat there, in disbelief just thinking to myself "why?" Yup, "Why?" You see, I had prayed for things to go smoothly, I had prayed for him to heal quickly, what I hadn't prayed for was a miraculous healing, but in spite of me, and how small I sometimes make my God, that is what he decided he was going to do. Of course my heart desired such a thing, but my flesh was just happy to get what I could get.

If I could continue to be even more candid- I think sometimes when you are in a position like us special needs moms, you begin to adapt a mentality of only having so many "miracles"-if you will. When you are faced with the BIG STUFF, that's when you pull out the BIG PRAYERS, THE BIG REQUESTS. But when things seem like you can somehow manage with the outcome, you are more selective with your requests. Maybe you are reading this and you really don't get it. I don't know how else to explain. We had seen God perform some miraculous things, just recently through the birth of our daughter Sophia, and you better believe we were pounding on heavens doors every minute, of every day in the midst of that situation. I guess we forget sometimes that with God, nothings too small or too insignificant to ask for. You might wonder why I would even look at this situation with Roman as "insignificant" but remember, I have a dear friend who's sons life is hanging in the balance just floors above me. Living in situations like these can sometimes blur your idea of what's important to God.

The nurses came in with my sweet boy. The first nurse told me that she just couldn't believe her eyes. That she was in the operating room when the toma was first found. And that they were looking into the ear and then back to CT scan results over and over, in awe. The second nurse said it was "truly a miracle" and started sharing some other testimonies of healing she had witnessed in the past. But that she had never seen a toma remove itself. Soon we went home. Soon we were sitting on the couch, watching TV together, him sleepy due to anesthia, me misty eyed as I kept glancing at our packed bags in the corner.

A week and a half had past. My husband was having a difficult time healing from a procedure he had later in the same week as Roman. He had an abdominal hernia repaired. A couple days later I had to call 911 as he thought maybe he was having a heart attack. Soon we found out he had developed blood clots and they had made it to his lungs. Following a few more days in the hospital he was sent home on more medication, including blood thinners. A couple days after being home he had to be rushed back to the hospital because his liver was shutting down due to the blood thinners. He was again in the hospital for a week. He was finally able to go home on mine and Romans birthday. And is currently doing much better.

Remember the little girl I mentioned who was also having a procedure done the same day as Roman? She too has 22q11.2 deletion, just like Lake and Roman. Her mother had to leave the O.R. with uncertainty as her daughters ear surgery didn't go as well as hoped. Her daughter recently received a hearing aid and hope is now restored.

 

Its now been a couple weeks since I was sitting on the living room floor folding laundry. I was thinking about Marti and her husband, thinking about Lake, praying for them as I went through the clothes. I was wondering what I could do to cheer there spirits. To make Lake feel special. We belong to a special community of families who rally around each other when we are faced with tough times with our kiddos. So I thought to make a card drive for Lake. I text Marti to check in, and to see if this would be ok.

Everything was set up, and in true fashion, this beautiful community willing joined in. Lake was gearing up for another heart procedure. He had already received a pace maker to regulate his heart rhythm. It hadn't been working as they had hoped for and now they were going to try to something different.

 

I text Marti to see how he was doing.

Lake passed away soon after that procedure. His family was able to be around his bed, able to say goodbye.

I am having trouble right now just typing and trying to form words. As a mother of a child who had the same genetic disorder, I felt fear that I cant quite form into words. As just one mother to another I felt a tremendous burden to intercede on her behalf. As a believer, I questioned God and His ways. As a friend I felt utterly helpless.

A few days later a few of us from the support group gathered at Lakes viewing. My heart ached in a way that I have never felt before. I couldn't help but think of the weeks prior. The prayers that had been prayed. The things that had been questioned. Why God made moves the way he did. Why healing doesn't always come as we had prayed.

But knowing that it does always come.

He is the author and the finisher. I don't understand why he does what he does. Its clear His ways are higher than my ways. I know that healing can manifest in a multitude of ways. Through the use of a surgeons hands, through the work of a device, after a period of touch and go, and yes, even through death.

I'm not sure how to end this post. My heart is still very heavy.  I rejoice there is a child who HAS BEEN HEALED, who has been made new, with a perfect body, inside it- a PERFECT heart, running through the streets of heaven, and resting in the arms of Jesus. My heart hurts that a family is left behind picking up the pieces.

Why God choses to heal the way he does...
Why he allows the pain that he does...
Why in this life are their families who struggle, suffer and worry... daily...

I don't know. I guess I will have to ask him when I get there.

Before The Diagnosis

My oldest son, Roman, was diagnosed with 22q11.2 deletion in 2010 at 3 years of age. I wrote this prior to finding out about the chromosomal deletion and at the beginning of the journey. Tuesday Roman goes in for his 5 procedure. These moments written below really seem like a lifetime ago. It was very strange to reread. We now have 2 more children and have been through much with them. I'm kinda struggling to find the words.


One of the first questions we ask each other in our local support group for families affected by 22q is "How did you find out." Well, heres the beginning of our journey, written as it was at that time. 

Written March 7, 2010:

Everyone has been asking about roman, so I thought I would just post an update for everyone to read. Its hard to go through the whole story over and over again every time a new person wants to talk to me about it, and quite frankly it's become very emotionally draining.

A couple of months ago Romans pediatrician moved to Texas, having his patient file pushed off on someone else. I made an appointment with the new doctor due to an ear infection roman had (again). This new doctor stressed having him see and ent to get tubes put in due to all the ear infections he has had. He also suggested that he get his hearing tested.

I had made both appointments and was able to first get his hearing tested before seeing the ent. Roman took his hearing test, and as I watched the sounds that I could hear, with what hearing loss I had, he couldn’t. I couldn't believe it. The results were that roman had mild to moderate hearing loss on the far side of moderate. They also took photographs of his ear drums and both were non responsive, with 0% vibration. During ear infections and recovery time Romans hearing loss would then be considered sever. 

We were referred to a speech therapist and also an organization that would be a go between

for roman and what help there is for him. 

Later that week we went to the pediatric ent at the Cleveland clinic. The doctor took one look in Romans mouth and informed me that his mouth is “A-typical.” the roof of his mouth in the back of his throat is misshapen, and his uvula, which should be shaped like a punching bag is shaped like an upside down heart. This being the reason why Romans tongue will hang out and he will drool a lot. She was amazed that his pediatrician had never noticed this before. She also found both his tonsils and adenoids are abnormally large and was concerned about air blockage to the brain. She ordered blood work to be taken to check his immune system due to the countless illnesses (over 15 pages long) and referred us to a geneticist, a pediatric pulmonologist, and a pediatric neurologist. We were to see the ent again after having seen all these other people. 

He has since had blood work ordered on him 3 times. This concerns me. Please pray that when we go again tomorrow that the get a good stick and that the amount they take is sufficient enough so we don’t have to keep going through that. We have yet to see the geneticist. They are looking to see whether the hearing loss is a hereditary thing or due to symptoms. Also they want to check to see what the mouth abnormality could be linked to. We went to the neurologist on Thursday and she found no reasons to believe he has anything neurologically wrong, praise God. She did however push the geneticist because there are several syndromes that could be linked to this defect. We go to the pulmonologist tomorrow, please keep us in your prayers. 

Roman has been going to speech therapy for three weeks now. On his first visit his therapist started signing with him. He was captivated and caught on extremely quickly. I cried! She said that he was picking up on the signs so quickly and was really impressed. They would communicate so well and when we would leave roman would cry and scream reaching for her. Since taking speech therapy Romans temper tantrums are almost never, considering how bad they were getting a month ago. His frustration due to lack of communication has been helped through speech therapy. And it makes me so happy to finally communicate with my son!

The therapist told me roman has a lot going against his speech and verbal skills. His hearing is limited and the words he hears are extremely muffled. Then when he tries to enunciate a word he can't not only because he doesn't hear it properly but also because he is not able to make sounds that come from the back of his mouth due to the deformity in his pallet.

At the time of Romans first appointment with the audiologist she assigned him an advocate. She came and observed him at the daycare and laid out all the options that were made available for roman. She had mentioned at the time that Berea city schools had a wonderful preschool program for kids like roman. There he would get occupational and speech therapy all day. We lived in Parma and mentioned they may do bussing, but had we been residents of Berea it would be more of a sure thing. So that’s what we did. Two weeks later we had moved.

Here's the amazing thing. Through this whole experience God's hand has been moving so boldly that it can't be denied. All the appointments I have made for roman I have not had to wait longer than a week to get in. when I originally seen the audiologist its was 2 days after I had called, and 3 days later he was being evaluated for speech therapy. Maybe you don't see the significance of this, but every single person I have talked to has told me that the pace I'm moving along with roman and all his needs is phenomenal. 

It was originally heartbreaking to have to take my child to speech therapy every week. But now I look forward to it. I’m so excited to find out what words we will be learning and I'm amazed at how quickly he picks them up. The amount of effort he puts into trying to talk is amazing. He never tried so hard before. My little guy is working so hard! His speech therapist said that while she usually will teach a child a sign or two during a session, roman can pick up four! 

In two weeks I was looking for houses to rent in Berea with not much luck. We moved on to Middleburg hts and still didn't find anything. We happened to look at some apartments at the islander and none of them really was what we were looking for. But I knew that we needed to get roman in the Berea city school district. After much frustration and finding out that all paperwork had been put to a temporary stop until proof of residency Marian mentioned that we should go back to the islander in Middleburg heights. So we did. It was 2 weeks since the first time we had, and they showed us an apartment that had just opened up. It had brand new carpet, appliances, tile floors, counter tops, cabinets and so on…. I couldn't believe it! Then I found out it was on special as well! We moved in one week later. It was hard to go from a house to an apartment. But God has been supplying every one of our needs along the way. And even though we have cried more than probably ever befor, I know in my heart that God is in control. I'm amazed daily by Him. 

The night we were first unpacking roman turned on the radio and started dancing! He had never done that before! There is significance in that simple moment, and a rush of peace when I think of it. 

Please continue to pray for my family. I will keep you updated :)