Well, we didn’t get the answer we were praying for at the doctor’s office yesterday. He said that her, “Gait is not a normal gait.” Am I surprised? No. Does that make it any easier to deal with? No. He said that getting into neurology is going to take forever. He feels like we don’t have to jump right into that, but would rather start with an orthopedic specialist. I didn’t really ask many questions b/c he as in a rush, we didn’t have an actual appointment and basically, I just couldn’t think on my toes. As a mom, I feel like we should start at the worst case scenario and work back towards the less severe issues. But, that is not the way we are working this one apparently. I am so scared. I know I have said that before…but, it has taken on a whole new meaning in the last 24 hours. I’m scared to just think positive and be disappointed. I am scared to think of what could really happen if this is something really bad. I am just scared to death. As I sit here and type this, I am shaking…nervous and afraid. I know there is nothing I can do except be here for Ellie at this point. However, that doesn’t stop the tears from falling or the nervous feeling in my stomach.
God, have I made the most of it?
This question haunts me and brings tears to my eyes right now. This is the first thing that crossed my mind when I found out I had CF. I didn’t know at that minute that I would live for years to come and I was scared. I wondered if I had made the most of my life. I have done the important things…go to college…have a job…get married…buy a house…have babies. However, have I made the most of those things? Some of them aren’t really that important to me (in the grand scheme of things):
College: Ask my parents…I am pretty sure I made the most of my 6 years there!
House: A house is a bunch of bricks to me…it is what is inside that makes life worth it.
Job: I loved it while I was there…but, I really love being at home with Ellie more!
The marriage and baby and basic happiness are what I feel like I could make more of. I started to do more to accomplish this after the CF diagnosis and then slipped right back into my routine. Easy street.
Now, with all of this happening to Ellie, I am left with the same question. Have I made the most with my time with Ellie? Why haven’t I taken her to the park more? Why haven’t I taken her to the zoo more? Why do I keep her in a house with me just so I can get work done? Shopping…is probably more for me than it is for her! I feel guilty…and I know it is the fear that is bringing it on. I feel guilty for not being in the hospital with Bennett when he crashed. I will never forgive myself for that, but I was with Ellie trying to give her a little piece of normal that day. Was I neglecting him…no. Do I feel like I made the most of my time with him…no, because I had another baby at home. I don’t ever want to have those same regrets.
The truth of the matter is that I don’t feel like we’ve been to hell and back. I know it could be a lot worse and I don’t ever lose sight of that. I don’t feel like, “Why me???” because it’s not just me…there are millions of people out there dealing with equal and beyond what we are dealing with. However, I have said this before…every single person’s situation is their OWN nightmare.
Oh, whatever! I am so tired that I can’t even get out what I really mean to say.
In an effort to “make the most of it” we took Ellie to the rodeo last night to see Alan Jackson. My heart was so full watching her excitement and joy around the animals, people, food and music. She loves life. She loves animals and music and food. She had a total blast and we had a blast with her!!! Biddie went with us which made it even more fun. We got to see the new 14 piglets that were born on Monday and we also got to see a lamb that was born 45 minutes before we got there and she was a twin!!! She weighed 8 lbs and her twin BROTHER weighed 20 lbs. It was unbelievable! I absolutely HATE petting zoos b/c when I was little I had a lama jump up on me to get the food I was carrying (not to mention the millions of germs in there!). However, it wasn’t about me, so I sucked it up and took Ellie in there alone (before B arrived) and she was in heaven! I of course, was not and I was especially annoyed and flustered when I turned around to find the GIANT deer gnawing on my leather vest! There is nothing in this world that makes me happier than seeing Ellie as happy as she was last night. It was pure joy for her. My pure entertainment came in when B entered the petting zoo with Ellie and a GIANT goat came flying at him in order to rob him of the animal food he was holding in his hand!!!!! I laughed so hard b/c you should have seen the look on B’s face…
My favorite moment was holding Ellie on my lap and sitting next to B when Alan Jackson sang, “Remember When” it was a great night!
Please, please, please pray for the health of our precious baby girl. Pray for her strength to withstand the doctor visits and the testing. Pray that she can overcome her fear of the doctor and that she will always feel comforted in our arms. Please pray for a miracle…that this is nothing and it will just disappear with time. Please pray that B and I continue to have the faith and strength to fight through these battles. Please pray that we can enjoy our days with Ellie without worry and that we can sleep peacefully at night and let our hearts take a break. We need all of your prayers right now and we thank you for taking your time to continue to keep our family in your hearts. Don’t forget to make the most of it today!
Blessings,
Angie
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7 comments:
Angie, I have been reading your blog and my heart breaks for your family. It is my prayer that God comfort you & hold you close during these difficult times.
We are both going through a rough time right now aren't we. Sometimes I feel like I don't get out exactly what I mean to get out in words. Oh well! I will pray for Ellie, hoping that her gait issue is something minor. I will pray for you, that you will find some peace. Hang in there!
Praying for you, Friend - that God will be your peace, your strength, your hope. Much love to you!
I found your blog while browsing around and my heart jumed when I saw that you had PROM too. My water broke at 22 weeks 1day and I made it to 32 weeks and delivered a little girl. How amazing your story is and encouraging. They never knew why it happened but I'm always curious to find out about others who had this experience.
Ang
You DEFINITELY make the most of it! You have a ball pit c'mon :) Keep your chin up you have my prayers and so does sweet lil Ellie.
Xo
Thinking of you always. Do they have any idea about what her gait issue could be caused by? I just have no idea what that means. I've decided that we are going to take a family vacation to TX next year to meet you and Ellie, Rhys, Coy and Isabelle. Can you imagine getting all of the kiddos together? Always have to have something to look forward to. I definitely think that you make the most of every day. Your love for your daughter is apparent in every post. Keep us updated!
Just one question: Is it possible to make the appt with neurology (since it takes so long to get in with them), and then if you get the answer at orthopedics then you can just cancel the nuero appt?
I have just prayed for peace over your hearts, your situation, and Ellie's body, and I will continue to do so. Love,
Alicia
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