A year ago today, our sweet Autumn graced the world with her presence.
She was a fighter then....
At just about a week old!
She is a fighter now!
When we brought Matthew home, our lives were complete. We were a family. I knew, though, that I wanted a daughter to share my life with. I wanted pink, frills, dresses, and barbies. I had no idea I would be receiving that miracle so soon.
I can honestly say, she is a "mama's girl."
I have always worried about the attachment with adopted children. Would they be as attached to us as to their birth parents? Would they always feels insecure? Today my question became answered.
Autumn decided to get sick on her 1st birthday of all things!! Our poor girl has been throwing up since 4:00 pm. When she is not throwing up she is cranky. The only thing she has wanted is me! She wants her mama, and that warms my heart. I am her mama!
Happiest birthday ever, sweet princess! You are truly one of the best presents we have ever received!
Today Autumn was in our local pageant. We had a blast, and we really enjoyed the day.
It did, however, get me thinking: next year Autumn will be in her chair. As much as I love pageants, I don't think she will participate because I feel she would be viewed as a "special" case.
So....to all my special needs mommy friends:
What do you guys think about a special needs pageant. A pageant where the special needs community all gets together and everyone is a winner. A title for all participants, where we can have a lot of fun.
I am still trying to get a "feel" for this, so I'm not sure what is going to be done. Please be honest with me and send me LOTS of feedback :)
What I am thinking of so far:
*no entry fee
This is an aspect of society we as special needs parents have not yet entered(to my knowledge.)
I really hope to hear from you guys soon, to see what you all think.
Feel free to email me as well: firstname.lastname@example.org
As I sit here and type, I am struggling with a fine line.
I was reading a friend's blog yesterday, and she talked about Advocated vs. Tyrant. I giggled as I read that because I understand. Little did I know I was about to draw my own line in the sand.
Yesterday started off as any other day. We woke up. We started meds. As Autumn ate breakfast, Brandon checked Matthew's blood sugar and urine.
In the morning I prefer to have a nice quiet first cup of coffee while sitting on my porch. Its nothing fancy. A "Dollar General" cup, not so good for you creamer, and the crisp air that has a tendency to give me motivation for the day. My coffee time today was cut short by my husband yelling "you need to see this."
We have been testing Matthew's urine every morning now for 29 days. For 29 days we have not seen a change at all. All little boxes are the same color they were the day before. Well, that was until today. Today the little box that said "blood in urine" popped up green as grass. We then did what any other parent would do, Brandon gathered up fresh cotton balls and urine sticks to retest, while I started calling our Keto team. When I finally got through to someone, they told me to try to get Matthew in to see his pediatrician and if not take him to the emergency room. Another phone call later, another urine stick with the same results, and we were off to the pediatrician's office.
I love our Dr. T. He is good to us. He is patient with Matthew (and myself.) He is kind, and thorough. I had no worries about the visit.
We were seen in a relatively good time. We explained everything to Dr. T. He gave Matthew a good exam and then.....BAM!
Matthew's right ear is infected again! His right tube has only been out about two weeks. His rash is slightly better but not great. He received five shots (poor guy) and the granulation tissue protruding from his button site was cauterized. Okay, so what about my son's urine?
Dr. T assumed our sticks were faulty and sent us on our way.
My heart sank. I made a few more phone calls and talked it over to my husband. If we were to come home not knowing then we would be doing Matthew an injustice.
So now, we went to the emergency room.
A doctor that listens~~~ummmm no! Dr. M was very rude. He proceeded to tell us we did not know what we were talking about, and that we just wanted unnecessary tests ran on our child.
This is where I had my limit. I was so angry I cried...literally!
Advocate was pushed to the side and Tyrant entered the room. I went off! I told him all about our son, his diagnoses, his special diet, our training, and then what we expected to have done.
Needless to say, six hours later we headed home. Sonogram came back clear. Urine came back clear. My tail came back between my legs.
And yet...I don't care. We know our son. I have to make sure he gets the medical attention he deserves. I will cry when I'm angry. I will stand up for my children.
So now I struggle. As a parent to a special needs child(ren) it is hard to see the line drawn in the sand. We have to move mountains for our children in order for them to get the treatment they deserve. Society has a tendency to attribute all of our children's problems back to their diagnosis.
I was told today that Matthew may have constant ear infections because "he's a special sick child."
Where is that line that is so easily pushed away? Where is the grading scale to grade our parenting? Where is the M.D. after our name that reads "Mommy Degree?"
I will sleep well tonight with my tail tucked. Not because I was pushy. Not because I was angry. But because even though Matthew's tests came back normal, I know we did everything we could to insure he was not just a "special sick child."
What you are about to read is indescribable. It is scary. It is TRUE!
The truths about motherhood:
Do you remember telling yourself your children would never eat in the car? I remember having that conversation as well. Then we had our two year old foster child, and lets face it: Happy Meals happen. If you were to look under the seats of my car you would probably find french fries growing fries.
Every mom has given their child a "wipey bath" at one point in time or another. The thing that most moms will not admit to is giving themselves the same "once over" as well.
Your child's bowel movements are in fact topic for discussion. You will discuss it. You will applaud when it happens. You will ask anyone and everyone if its "normal." Its mommy hood!
There will come a time (the most inopportune) that you will change your child's diaper in public. You may even become a pro at changing them inconspicuously while still in their stroller, in the middle aisle of Walmart, and no one will notice. Now that is "Mommy's Got Talent!"
At the end of the day, if you are not wearing snot, vomit, poo, or pee your day is indeed a success.
Diaper bags take place of purses. Coffee takes place of exercise. Its a sad cycle.
Your bra will in fact become a "catch all." I have, myself, been known to be holding a cell phone, cash, pacifier, and keys at the same time.
~~~And last but certainly not least......
In the middle of the night, when you are already in need of a lot of sleep, you will hear your baby cry. For a few seconds you will hope and pray (with one eye open) that they will soothe themselves. When they don't you will stumble every so clumsy into their room. You will stub your toe on their bed. You will say not so nice words in your head. You will change whatever monstrosity awaits you within their diaper. Then you will snuggle them!
And no amount of poo, pee, vomit, or snot can take away the feeling of rocking your child to sleep.
Its not pretty. Its not perfect. It is defiantly not glamorous.
It is worth it!
And that, my mommy friends, is what mommy hood is all about!
......Actually he's been a Keto Kid for almost a month now; his mommy just can't seem to get around to blogging about it.....
August 23rd is a day to remember. We joined the Keto club.
For those of you who don't know, the Ketogenic diet is a diet that is used for hard-to-control seizures. The diet is high in fat, low in carb and allows for the body to build up Ketones as an energy source in the brain instead of glucose. For more on the diet please go here. We prayed for months on the diet and our sweet Matthew. His seizures are hard to control. We are currently on two anti-seizure medications with no avail.
So we spoke with our neurologist and decided to give it a try!
We started to diet process with a twenty-four hour EEG. Matthew was NOT impressed. The goo, the wires, the whole dramatic event made him one unhappy little camper. The big guns (Dr. Epilepsy) came in and spoke with us about Matthew's seizures. He showed us the MRI that had been done prior to the diet. Its all a bit overwhelming. Matthew has little of the left side of his brain. What he does have is constantly firing seizures. The the right side of his brain is more intact, but he is still firing seizures from many points. Needless to say, our sweet prince is living in a fog due to constant seizure activity and medications.
The stay in the hospital lasted three days. We trained and trained. We were constantly met by our dietitian, our educator, nurses, doctors, you name it-they saw us. We learned a lot and asked many many questions. Wednesday came, and we were going home.
Matthew has adjusted to the diet fairly well. Though we are not yet seeing a big decrease in his visible seizures, we all agree that he has had a decrease in the seizures we were not seeing.
He is much more alert and vocal. He is making new sounds. His eyes are clearer, and his opinions more widely known!
We could not be happier. We know we may never be seizure free. We understand that Matthew's diagnoses are hard to swallow and allow for a lifetime of commitment. We see our loving baby boy smiling and cooing and playing! What could be better?! Typically if the diet is even a moderate success, you remain on it for two years. So we are only in the beginning. As the parent of a medically fragile child, sometimes I doubt my decisions. I stand at the crossroads of "what if" and "why not." We debated and complied about this chance at a glimpse of a seizure free(er) child for so long. However, as I type this I am proud of our decision. My son deserves the best. This diet could be that for him.
I tend to grieve for my children after leaving each and every doctor's appointment. I grieve for what I feel they have lost. This week's appointment was no different. Autumn had a follow up with the SpinaBifida Clinic. This is your one-stop shopping of appointments. We saw everyone!
Fist to bat was the dietitian. She is perky and friendly, and we adore her. She had a few slight suggestions for our sweet girl. There were no big changes to discuss, and therefore we moved on. Next to bat was the occupation therapist. She was smitten with our star (as most are) and watched as our little "Can-doer" crawled everywhere. She was happy with Autumn's development, and no changes were made.
Third to bat was the nurse. She was friendly and polite. I am a scary mom at doctor's appointments, as I have my little notebook full of questions that need to be asked. She answered them all well, and did an assessment of Autumn. We are adding a medication to help Autumn potty. She is starting to have some issues with this, so we are being proactive. Also, we are starting to see some skin breakdown on Autumn's bottom. We were given a cream that should help. This is sadly, something we will be facing for the remainder. Now here is where it gets tricky. As the doctors, therapists, and nurses came in and out each one answering my questions accurately and admiring all of the accomplishments we've made, I felt this appointment was going too well.
At our past appointment we were informed that once Autumn was developmentally ready (aka pulling up on things and being more mobile) we would then start correcting her feet. As scary as this sounded I knew that Autumn was beginning to be ready.
So I asked: When will we start trying to correct her feet? The nurse left to find out, and then the physical therapist came in. We love her. She is down to earth and full of answers. She is polite and educational! She was my worst enemy on this particular day. She informed us that because Autumn would never be able to bear weight on her feet that fixing them was unnecessary. If we put her through the surgery(s) it would have been for nothing seeing as that without bearing weight they would resort to their clubbed form.
My heart sank. I know this makes sense. I understand what they are saying to me. It is logical.
Have they met Autumn??
She has a tendency to prove everyone wrong!
So we left the appointment in mourning. I mourn for her.
She will only know how beautiful and perfect she is to us and all who love her.
I mourn for the ridicule and stares she will get in school. I mourn for her sense of identity that will already be vulnerable.
I mourn for my independent, beautiful daughter who will always have her legs curved and her feet clubbed.
And yet, She doesn't mourn.
She crawls, pulls up, and proves me wrong!
She is different. But not because of her physical attributes.
She is different because she is who she is.
So as I type this, my fellow blogger friends, I am praying for guidance. Praying for wisdom.
We are blessed with wonderful therapies for our children. With those therapies come equipment, and I must admit we get the wonderful opportunity to use some really neat things! One of the most valuable pieces of equipment is Matthew's adjustable stroller. This is for sure our life saver when we go out! This is Matthew's first ride in his new wheels.....
This is Matthew and his wheels recently.....big change!
He is able to use a collar. The collar has really allowed our little man to gain more head control. I was very skeptical about this one, and it has proven me very wrong! Matthew's feeder chair is the underdog of equipment. It doesn't light up or move; however, it is probably used more often than most of the other pieces of equipment. It really helped us to get Matthew to start taking food orally. Our first time in the feeder chair~~not impressed
A more recent picture including his collar~~oh how he's grown
For vision therapy, Matthew has a little room. He loves his little room, and has recently really started trying to grasp for things in it. The kid loves bright beads (I think he takes after his mommy on that one!) Matthew also has the pleasure of using a ladybug chair. This is not his favorite thing, but my oh my has his world started to change because of it. After a short bout of fits, Matthew is starting to enjoy "bug seat" time (I'm not sure where it came from, but it stuck) and has shown a lot of growth here. He even reached out to touch a few colored cubes off of his light box. His light box is amazing. Watching Matthew look at something and focus on it with purpose is a miracle. My little man processes much more than we may ever know.He is showing much better head control
And trying to touch the light box
Look at my little man go
The true heroes of the equipment is our bath seat. Need I go into much more detail about this one?! Autumn is not left out either. This is the Wingb0 which was originally brought for Matthew. He HATED it, but Autumn enjoyed swinging. While we were able to try it out, Autumn was in love! And.........
One of the most precious days in my life was when Matthew was able to swing. Our sweet therapist, A, brought it to us to try out. We are not around a wheelchair accessible swing in the near vicinity, and I was distraught that my son had never been in a swing. When Matthew cooed with the rocking of this hammock-like swing hanging from one of our entryways, my heart sang!! I am constantly amazed at what is available to our special kids. Every piece of equipment we have had the pleasure of trying has added to my children's abilities.
A year ago today, I held my sweet Matthew for the first time.
A year ago today, Matthew came home. ....And what a difference a year makes!!! The past year has been a whirlwind of doctor visits, medical research, therapies, and knowledge. It has been encompassed with love, snuggles, kisses, and milestones being met. Every single day is new and exciting. I am reminded every morning when I wake up to the sound of Matthew cooing or playing his version of "peek a boo" with his blanket how blessed I truly am! It still amazes me looking back at how truly terrified I was to bring Matthew home. The moment our amazing Ba placed Matthew in my arms, my entire world made sense. My heart grew more than I knew it was capable of. I held this little child in my arms and forever in my heart. In the past 365 days, Matthew has just blossomed! He is growing and learning more each and every day.
Thank you my sweet boy for giving me all of my dreams wrapped up tight in a brown-eyed charmer!Happy "Gotcha-versary" Matthew!!!!
I am a wife, mother, sister, and friend. Some days I am a maid, chef, taxi, and confidant. Everyday I am a sinner saved by grace that which I do not deserve. This is our story of expanding our family through adoption, and raising our special kids who happen to be superheros! Please join us in our laughter and tears. Put on your seat belt and enjoy the ride!